photo ©2007-2014 jchanders
please read the updated posts Aila’s Birth, Life after Aila, and It's Been 6 Months
I am writing the hardest blogpost of my life today to fill my dear readers and acquired family in on some extremely sad news that has taken over our household, and are asking you to join us in prayer.
Ryan and I picked out our baby girl's name a few weeks ago when we were celebrating her life and expected September arrival in Maui on our ‘baby-moon'.
We picked the name Aila. (AY-luh)
It means the strength of an Oak and bringer of light, which we thought was perfect.
A few days after we returned, we had our much anticipated 20-week ultrasound, where they count the fingers and toes and make sure all of the organs and body parts are properly formed and functioning.
During this appointment, we were told that Aila had severe growth defects and potentially had a life-threatening form of a skeletal disorder. After declining the immediate recommendation that we end my pregnancy, we decided to seek a second opinion at UCSF and get a clearer diagnosis. We were told the unfathomable news that Aila has what’s called Lethal (or type II) Osteogenesis Imperfecta. Only .19 in 10,000 of these babies are born alive, and the ones that are only live for a few minutes to 24 hours.
We wrestled for the last 10 days in prayer, mourning, tears, and occasional joy from knowing that she would soon leave this broken body for the perfect one God has waiting for her with him in Heaven. We've asked for a miracle and know that it could happen, but are preparing to say goodbye if we have to as well. It has been one of the darkest times in our lives and far worse than anything I ever walked through with my disease and health over the last few years. I lost twins to a rare pregnancy complication called a molar pregnancy at 10 weeks right before Asher and even then, I couldn't have imagined anything worse. This is far, far, worse.
I am still not sure how I will make it through the last half of my pregnancy knowing that I may never get to meet my little girl, but we are just taking it day by day. Really minute by minute. Right now, we are focusing on enjoying the time we have being her parents, even if it is only in the womb. We are trying to be strong for Asher and continue to have joy and laughter during this time for him, and for Aila. We do not know how long she will be with us, but are going to try to enjoy whatever time we have left.
This is an extremely hard time for us, and we appreciate all of your prayers and support more than you could know. It’s very painful for us to talk about details, but I hope to be able to write more in the future about what we are going through. I just do not have the words to express our grief right now. I never thought that the struggles we faced with my disease would amount to anything, and God has proven otherwise with the continuous blessings that have come from it, so we know that eventually, He will do the same with this.
We love you all and are so grateful that you have become a part of our family, through the good and the bad.
With Love,
The Walkers
paigeworthy
Oh my lord. I am so, so sorry to hear of this heartbreaking development. I’m a new reader and you don’t know me from anyone, but know that my heart and thoughts are with you.
Charis Denny
What she said… How absolutely heartbreaking. Sending love and healing to your whole family.
Donna Peart Shelton
My Heartbreaks for you. Prayers and love to your family
Austin
It’s beyond comprehensible to see Divine purpose in such dark times. Humanity has a way of coming together & comforting our souls with Divine goodness. All the Love & prayers to exceed your circumstance.
Michelle Durheim
So sorry to hear your news. I will keep your family in my prayers.
Diann
Our prayers are with you and your family during this time.
DAnn
You and your family will be in my thoughts and prayers. May your little angel once again find her wings and soar.
Brandi_T
Love and light to you, your husband, Asher and your precious Aila.
Michelle Lange
Sending every prayer and bit of extra strength to you and your family.
Kj
I am so very sorry. Praying for peace and grace for you and your family.
Lindsay Stewart
Wow – keeping you family in our prayers as you process this! Praying for strength, peace and wisdom. Thank you for keeping us updated, I am sure that was painful to write.
writer cindy
my love and prayers for you, your family, and your precious wee one.
ginanel
I am so sorry to hear this. My husbands cousin has OI, and they did not know during the pregnancy. It has been an adjustment for them but their son is a fighter! Wishbone day just passed and it was lovely to see so much support for their family. https://www.facebook.com/WishboneDay
Chellie
I am so sorry! Prayers to your family and your precious baby girl.
Claire
Oh, I am so very sorry to hear this. You will all be in my prayers.
Brenda Penton
I am so sorry to hear this. My thoughts and prayers are with you and your family at this time.
Kate
No words. Prayers to you and your sweet family.
Bert Karpinski
As others have said, you don’t know a lot of us but we all feel like we are a part of your family. Know that you are in my heart and prayers.
Laura
Sending you much love and strength Danielle to you and your family. x
Josie Zarzycki-Burns
thinking about you and your family – big hugs x
Carissa Baker
So sorry to hear this… prayers for you & your family. May God give you the strength to carry on and the Mercy to comfort you in your time of need.
Linnéa Geiger
All my thoughts, this is heartbreaking and I am so so sorry for you all.
Michelle's Family
I’m sending you many {{{{hugs}}}} and prayers..
Sandy
I share your grief and lift up prayers in your behalf.
Sheila
So very sorry to hear the news about Alia, The most important is that she will know that she is loved by the entire family and receive prayers from her extended web family.
Elizabeth Lisa Stevens
I am so very sorry for your heartbreaking pain! I am praying for you, our God is a God of miracles… and even if healing of her broken little body isn’t in His plans, just know that one day you will be reunited with Aila in heaven where she will enjoy perfect health. I can’t even imagine the pain right now 🙁
bryony
Oh my that is the most heart breaking thing I have heard. I too am pregnant, just 12 weeks and I can’t even imagine being told that kind of news. Lots of love and positive thoughts to you and your family. I’m truly sorry for what you are all going through.
gem_im
Oh my gosh, what a horrible thing to go through…I am so so sorry. Praying for you and your family.
Tina
May God continue to uphold you minute by minute.
“People talk as if grief were just a feeling—as if it weren’t the continually
renewed shock of setting out again and again on familiar roads and being
brought up short by the grim frontier post that now blocks them….
We are not doubting that God will do the best for us; we are wondering how painful the best will turn out to be.” CS Lewis
Miranda
our hearts and prayers are with you and your family….much love
Emily
Danielle & Family,
Thank you for taking the time & effort to express what you are going through. I am amazed with your strength & courage in this most difficult time. The fact that you can stay positive, upbeat, and full of faith is very inspiring and assuring of the goodness in life. I wish the best for you, your family, and your baby girl. Miracles do happen, and I hope that one finds you, in whatever form God sees fit.
Much love, Emily
Misty Griffin
http://www.nowilaymedowntosleep.org
Praying for your hearts.
Bethany
Praying a miracle for you. He is able.
Lori Carson
My thoughts and prayers are with you and your family.
TristineFleming
All things are possible with God…she is in His hands regardless. You and you WHOLE family are in my prayers.
Laura S
I cannot begin to imagine the heartbreak you and your family must be feeling right now. My heart breaks for you. You are all in my prayers during this extremely difficult time.
RBMW
Lifting up you and your beautiful family in prayer. The Lord does heal, but we never know in what form of healing you will see His work. Praying for healing and peace beyond understanding.
kathleen
I will keep you and your family in my prayers.
falynn
My prayers are with your family during this difficult time.
Lisa Ann
Praying for you and your precious family. Much love.
Jody @ Mommy Moment
Sending prayers and love. Aila is blessed to have you as parents…even in the womb, she knows your voice. I am sure that no words seem comforting at this time, please know our family will keep praying…
MrsF3
I will pray for all of you. Know that you are not alone in this difficult journey–others have gone through it as well. Somehow, God does see you through it. May he give you strength.
KWG
Prayers for you, your husband, Asher and Aila.
Megan
my heart breaks for you, please get in touch with As I Lay Me Down to Sleep, as an OB nurse, I have had people utilize this with babies that face dire diagnoses. I will pray for you. God’s peace. Lots of love from MN. Prayers and hugs.
Adele
Couldn’t read and not respond – sending love and strength to you and your family in this time of need
Anna Marie Joudy
Oh lord have mercy. Teary eyed mama praying for your family and perfect little one.
Jacquie Taylor Merrill
So sorry.
Max Edward Wagers Jr.
I can’t even begin to know what to say. May you find comfort.
Heather Dean
so, so sorry to hear of your news. warm, positive thoughts for you. I have been following you for some time because I too suffer from intestinal issues, and I am absolutely heartbroken for you and your family.
Laura
I pray for His peace in your life right now. Praying fervently for your sweet family!
Alyce B
I’m so sorry to hear this news. You are right though, God can perform a miracle! He still does. Do not give up. Do not give up hope. Cling to Jesus. Jeremiah 29:11
Megan
I am so deeply sorry, Danielle. My husband and I will lift you and your family up in prayer and pray for both a miracle and for these wounds to heal
Laura
❤❤❤love to you all❤❤❤
Rae
Praying for a miracle.
Melissa V Palmer
I am devastated for you. Praying for your family.
Ruth
God bless you and keep you! I will be praying for health and healing for all of you!
country chick
Heartbreaking….experienced two miscarriages myself ….praying for you and your family.
laura
Tears and prayers..
Linda
With you.
Victoria
We weep with you at this crushing news. We are in prayer with you, and are here to hold you and your family up in prayer during this difficult time. He is faithful and will not leave you comfortless.
Beth @ Tasty Yummies
There are truly no words. Hand to my heart, I am so sorry, Danielle. I am thinking of you and your amazing family at this time. Sending good thoughts and love to you all.
Rachelle
Praying for God’s grace and divine intervention. Don’t give up on your miracle. Continue to petition heaven for it. Praying for you and your family!
Claire
Reading this brought tears to my eyes, thoughts and love go out to you and your family xxx
Kim
Prayers for you and your family in this time.
Lynn Czeschin-Hart
I cannot begin to know what you are going through. My prayers and thoughts are with you at this difficult time. So sorry you are having to deal with this.
KimOh
I am so sad for you, your family, and your precious little angel. I know there is no worse pain…
Hannah
I am so sorry. I cannot imagine how hard this much be for you. Sending prayers your way.
DeAnna
So very sorry to hear this news. You and your family will be in my prayers.
Ree
You and your family and your sweet Aila are in our family’s prayers. Mother Theresa’s words have comforted me when I didn’t think I could go on. She said “God never gives me more than I can handle. I just wish He didn’t have so much confidence in me!” Good to remember how much Confidence God does have in you. Big Hugs to you.
Donna Fox
Words cannot express what my heart feels for you. May you feel peace with your sweet little family in doing all you can in the next few months. Love your blog and inspiration. Prayers and hugs and love for what your are going thru.
Elaine
I am so sorry. This made me cry. I will have you and your family in my prayers.
Ashley
I am so sorry to hear the sad news. My thoughts and prayers go out to you and your beautiful family. Know that this wonderful community you have created here, on these pages is supporting you in your time of need. xo
SuperMom
I am so sorry to read this. My prayers are with you all.
Juliet
I am so sorry. My heart is breaking for your family.
Katie
I am so sorry to hear your news. I will be praying that God will give you peace, comfort, and even joy among the sorrow.
Robin
Having lost our first daughter at 40 weeks, as well as a twin at 11 weeks, my heart goes out to you. I would like to tell you that in all of the sadness, she is blessed to have you and you to have her. She is still perfect because she is yours. Enjoy these moments as her mother, even though difficult. Much love.
Anna Hanna
We’ve never met but I am heartbroken for you & your sweet family. May our God be your strength & comfort over the coming days, weeks, & months.
Family Grokumentarian
What a harrowing experience. We are with you and your family – know that an entire community of souls is throwing its arms tightly around the Walkers! Precious Aila is in our hearts.
Amy S
In tearful prayer for you and your family. I am so very sorry. May The Comforter’s presence be very real to you during this time.
Annie
Prayers and tears for your family and baby girl, Danielle. Miracles DO happen and we are all praying God will work one through your precious baby girl.
Amanda Garza
I am so sorry!! My heart mourns with you and your family during this difficult time. God is faithful and he will pull you through. I admire your perseverance and strength. You will be in my prayers. ♡
Melona Gallagher
My heart aches for you, I will hold you all in my prayers xxx
Melanie Morris Carlson
So sorry to hear this. I know God is sovereign and has a plan for your family. You and your family will be in my prayers.
Lucy
I am so sorry. Praying for you and your family. Let the Lord Jesus carry you as you walk through this valley.
Kelly Brown
My gosh…I am so sorry to you & your family at this news. It is heartbreaking. I will pray for God’s peace for you all. You speak of this in your post with such beauty, strength & grace. You provide such a wealth of information to all of us that follow your blog…I hope that you feel all of our love, support & prayers.
Cynthia H.
Aboslutely praying for you and your family and also for a miracle! Thank you for sharing your heart with us at this time.
Amy
Many prayers of strength to you and your family….big hugs and prayers for baby Aila….
MrsBaeb
My heart aches for you. I’ll keep you in my prayers. God knows what He’s doing, even if it doesn’t make sense to us.
Sarah
Heartbreaking. There are no words. Love and prayers for all of you.
Stef
Praying for your family.
Amy
The Lord is good and His love endures forever. Praying for peace,peace in knowing that God is in control.
Brian Stanton
I believe you will get to meet her one day whether it’s in this life or in heaven. Our prayers and thoughts are with you and your family.
Sheri
Holding you and your family in my heart. There are no words. I am so sorry.
sharon
((((((Hugs))))))… May God be with you ALL>..
Amber
Im so sorry and couldnt even imagine..Ive asked God to give you a miracle..may God comfort you and bring you peace in this difficult time♡
Stacy Lockhart
I commented on your post on Facebook but wanted to share here as well so you will have some resources.
May I give you some resources and a website to look at? I am a Stillbirthday doula through Stillbirthday.com and on our website are many resources for you for what you are experiencing right now. We have different beautiful ideas for bonding with your baby right now and after she is born. Also, you may look into finding a Stillbirthday doula in your area. <3 Thinking of you in this difficult time. We have been through something very similar. Hugs!!
melsbabysis
I am so sorry. My heart breaks for you. May God comfort you and give you strength.
ydouask
I have a knot in my stomach and tears in my eyes. I am so sorry. Children are a miracle given to us to love and cherish. My prayers are with you. Be strong, like the oak tree.
Jamie Higgins
Sending prayers for you and your family.
meghan
I’m so sorry. My thoughts and prayers are withyou
Jen
So sorry!! Much love to you and your family.
robin
I will be praying for your miracle!
Debi
I’m literally choking back tears for you, your family and your little girl. Thank you for being vulnerable and authentic. I hope you can feel the love and support being sent your way!
Jen
So very sorry for what you are having to endure. Prayers to your family.
Lynda Duncan
God Bless you all…..such a heartbreak you are all going through. I can not imagine it. Praying for peace, healing and the loving arms of God around you all.
Rachel @ Following In My Shoes
Heartbroken for you … praying for each family member (including sweet Aila).
hrf1987
So heartbreaking. I am so sorry. My thoughts and prayers are with you.
Jodi Mann
I am deeply sorry and pray that God will continue to guide and comfort you.
RickyandSue Neal
We will be lifting you in prayer continually during this exceptionally difficult time. We pray the Lord bring comfort and peace. God bless you all.
jennifee
I am SO sorry to hear this. I found out during my 10 week ultrasound that my baby had passed away and I had to go through the miscarriage and deliver her at home. I totally understand the heartbreak and cannot even imagine how you feel being that far and having to go through this. Please know my prayers are with you and your family.
Sheila Putman McLain
Praying for your baby and precious family! I know several friends who were told the worse about their pregnancy, and given the recommendation of termination. Their hearts were broken just like you, but they trusted God, and in a few short months, they held a healthy baby in their arms. I believe that the same can happen for you!
Berta
Thinking of you and your family, sending prayers!
Lisa
I can not imagine what walking in your shoes is like, but ALWAYS remember God is holding you tightly and carrying you when it’s all uou can do to breath. Love & prayers.
kristy
Prayers, virtual hugs and loads of love. Nothing harder than making life decisions xxxx
Jenny
I’m so so sorry! Your little girl is still with you growing and your still her parents so you need each other right now! You will get through this and your little man will be your permanent sunshine xx❤️x
Susan Vita
I am so very sorry! May you feel the constant presence of God carrying you through. =(
AmyJ
Prayers and love for your family.
Ashley
May The Lord give you strength and peace through this very emotionally difficult time
Peggy Lane Deegan
Thoughts and prayers for your precious family. You are a blessing to so many with all that you have gone through and are willing to share. So sorry to hear of this.
abbie
Praying for you and your family right now. Rom 8:38-39 “for I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation will be able to separate us from the love of God in Christ Jesus our Lord.” May the peace of the Lord be with you.
Florence Garlick
The prayers of your digital family are with you, your family, and the precious little girl.
Gidget Pettey
I’m praying for your family.
Alana Morgan
So sorry to hear your news. I am confident that God has you, your family and Aila in His grip. Prayers up.
Krystal
I am so sorry. A college friend’s daughter has this condition, the lethal OI. She was told her daughter would die at birth, however she surveyed and was enrolled in a clinical trial and is on medication and is now 4 years old and doing very well. You should check out her blog eviejayne.blogspot.com.
Marie
I am so very sorry to hear this news. My hopeful thoughts and prayers are with you and your family.
embold2en
My prayers are with you!
Rachel Wolf
Oh, Danielle. My heart aches with yours. Lighting a candle for you tonight. Love and light, Rachel
Dana Winters
Sending you lots of love and comfort. I hope you can feel all of the support being sent your way. Xoxoxoxo
CeciMami
I am so very sorry. Sending you love and light…
ali jones
When I read this I just shouted in disbelief. I follow your blog and have your cookbook and look up to you so much. And the miracle of it all while I was reading this…my daughter’s name is Aila! A spelling I haven’t seen again until this day. She’s 7 now and I thought it was the perfect name…just as you do. My prayers are with you and your family and your precious baby girl. I feel closer to your journey. You are a blessed woman that has brought many people into a healthier lifestyle. I value your work and I believe in a God that is HUGE in miracles. I pray you get to meet her and that God works a divine miracle in your lives. God bless you and your family and especially sweet Aila.
Hillary
I am so sorry that your family is going through this. I can’t imagine how hard it is to know that she is going through this too.
I am sure there are many critics of your decision to not terminate your pregnancy, and I just wanted to say how much I admire and respect you. I know our father in heaven is pleased with your decision, and will give you the strength you need to endure this.
linda colley
Im am so deeply sorry …my brother and his wife went through a similar time…i remember my brother saying that the only thing that he and his wife could do…was to celebrate his life what time they had…no matter how that is just celebrate her life…im praying for her and all of you to…stay strong …this will be the one thing you can do for her….thank you for sharing with all of us…big hugs sent your way…Linda…xo
Kat
Take care of yourself and your family process, mourn. That is what’s most important right now. I cannot imagine the grief you’re going through… You’re in my thoughts.
rob e
Wow, it sure takes a lot to open up about this and share you story. Prayers to your family.
Mic
My best friend went through something similar. Here is the link to her blog where she talked about everything they went through – https://adalynmayourlittleangel.blogspot.com/
Emily H. E. Brown
Oh, I am so sorry!! I pray for your healing and peace, and for Aila.
Stacey Frattinger
I am deeply sorry for what you are going through…I will keep you and your family in my thoughts and prayers.
David Bertram
I am so sorry for the situation you are now facing after all you have been through. I do not know you very well but your words indicate a person of strong Faith. May the Lord respond to everyone’s thoughts and prayers with a miracle. But only He knows what the future holds and one day will reveal it. In the interim I hope He surrounds you with His love, mercy and grace. May His peace get you through this. God Bless you and of course I will include you in my prayers.
Djaco
My heart breaks for you and your family. 21 years ago I lost a daughter to a genetic illness. She lived 14 months, and she was quite ill her life, but that little girl taught me more about the human condition and about myself than anything or anyone ever could have. I knew that we faced hard days ahead when she was born, and I didn’t know how I would get through. I worried that I would go crazy, or wouldn’t be able to care for my other children. But we are strong. Humans are resilient, and you will get through this. 4 years ago my sister found out in her 6th month of pregnancy that her child had lethal dwarfism. The doctors told her that children born with campolmilic dysplasia live for minutes to hours at birth. The emotions we all felt when he was born are indescribable. My sister thought she was going to have to say goodbye. Nicolas lived minutes, and then hours, and then days…and this August he will be 4 years old. He has had his problems, but he has been the brightest light in all of our lives. I believe that each life, no matter how fleeting, has a purpose to fulfill. I will be keeping you, your beautiful daughter, and your family in prayer.
Michelle
Just wanted to send some warm thoughts your way. I’ll be thinking of you and your family.
Kelly
So very sorry. XO
Trisha
Miracles do happen. I had a friend who they said all was wrong with her baby too and she chose to carry on. When she had the baby she too was prepared to say goodbye, the baby was born healthy full head of dark hair. Hang in there miracles happen! God be with u and family.
Jeanette
So very sad for you, you guys will be in my thoughts.
Julie
<3 sending you prayers
Dana312
I am so very sorry for the pain and sadness all of you are going through. I pray GOD pulls all of you through this with strength, faith, and love.
Sally Inman
I am so sorry to hear this. I will lift you & your family up in prayer. May God bless you & hold you close with grace & love through this trying time.
Jessica
I am praying for you and your family and that angel you have with you. God is good and many will say how can He allow such sadness and disease if He is good but we are not meant to understand His mystery and what these ripples do for the greater world. Thank you for sharing your story. You will be with Aila again and she will not have pain, nor will you. Keep strong in your faith and grow closer as a family. Much love coming from Sacramento.
Linda Plant
God bless u all and help u through this journey in life. Stay strong for your little girl. Xxx
Herbal Gal
Lifting all of you up to the Most High God.
Cheri Nikkel
I cannot imagine what you and your husband are going through. Just know that there are people here who care and are praying for you and little Aila as you move forward.
Jennifer
I am so sorry to hear your news, I cannot begin to imagine the heartbreak and grief you’re suffering, and am sending you all my love. <3 Kia kaha.
Britt
I’m heartbroken for you, and just have no words….I’m sending love, hugs, and all the good energy I have your way.
Peggy Thompson
Heartbreaking news. My prayers are with you and your little one.
Theresa Holmstrom
Absolutely heart-broken and in tears reading this post. Know that with God anything is possible, and that I am praying for your extended family on a regular basis.
Leslie Dawson
Definitely praying for you! Check out Kid President he has type 1! here is the video
https://www.youtube.com/watch?v=IcZVGjG6LWM&index=42&list=PLzvRx_johoA-YabI6FWcU-jL6nKA1Um-t
Tricia Gann
Praying for a miracle. Praying for you and your husband. May the Lord give you wisdom and lead you to others that have been where you are and can encourage you. I don’t know if this is the exact condition but here is a family that has beat the odds.https://nathanryangladfoundation.org/about-me God is in control and I see that you have faith and trust in Him no matter what the outcome. I know this baby , even unborn, is loved . Psalm 46:1-3 – God is our
refuge and strength, and ever-present help in trouble. Therefore we will not
fear though the earth will give way and the mountains fall into the heart of
the sea, though its waters roar and foam and the mountains quake with their
surging.
Julia
I am very sorry Danielle. I got goosebumps reading this blog. every word just sunk my heart deeper and deeper into my stomach. It’s beautiful what you wrote about how God has blessed you through your UC and that He will do the same again…and even more. I pray for great peace in all your hearts. <3
carrie
My husbands family has this and they have had many family members give birth to kids that have the condition. I will pray gor you but keep the hope that many people in my family have this and they are living long healthy happy lives. Keep your head up
Susan
You are a courageous woman. Know that you are not alone. Know that those you inspire are lifting you and your family up in prayer. May the Lord grant you and your sweet little one strength, mercy and peace.
Briana
Your family has my deepest sympathy and our continual prayers.
Lucy
This little girl is already surrounded with so much love! Praying for all of you – that you might be steadfast during this time and especially for Baby Aila, whose name (Bringer of Light) is so fitting, that she may be healed.
Kathryn Jewell
Peace be with you and your family. I am a Sonongrapher, I do the ultrasounds. I have seen grave diagnosis for many in my 20 years. You love your child, and I pray that you will be able to hold your baby and say good bye. There are support groups out there for you, may I suggest you find one? They have or are going through something similiar. You need someone to talk too. This is a heavy cross to bear but God has a purpose for it all. Remember he loves your baby more than you both do. He will take care of her.
PM
This is utterly sad. I pray that she is in that .19 and you deliver a perfect baby girl.
Barbara
Praying for Your Baby and Family.
Johanna
I am so sorry to hear this terrible, sad news. I wish peace for your family.
patti
So so sorry to hear your news of your precious little girl Aila..please know that you and your family are in my thoughts and prayers..
Trish
God has the final word. I pray healing, life and health to baby Aila. Keep strong, keep looking up because God is ALWAYS with you and there’s no one better to walk this trial with. I pray for you the perfect peace that passes all understanding. God Bless.
Margret
I am so sorry … Lost for words… I hope you find comfort and guidance in your faith.
Kimberly
Many prayers for you and your family. My heart breaks for y’all.
Carrie
I am in tears for you. Just as a reader of your blog and admirer of your recipes, but in tears nonetheless. I can’t imagine the pain you and your family must be feeling right now. You are in my prayers for a peaceful remainder of your pregnancy and for joy in however much time you get to spend with your little girl.
KateP
So many prayers.
Alyssa Willey
There are no words to comfort you, I know, but I am thinking of you and wishing you all the best in your situation <3 🙁
Beth D
Praying, Praying, Praying.
Beth Walsh
There are no words any person could write that would ease your pain. In this age of social media, you find people from all walks of life that have shared in your struggle, that have had a story similar to yours, and they all want to tell their story when they read one that is like theirs. I see my story in yours, but this is about you and your family and not about me. Instead of filling you with my story, I will tell you that you and your loved ones will find strength in each other….you will find solace and peace that will rise above the grief. You will be filled with understanding and love…but it will take time. Hold on to one another with love until that time comes. Love and Light to you.
Kelly
My heart breaks for your family. Prayers are being offered up for your family during this unimaginable time.
Julia
praying for precious Aila
Teera
I am so very very sorry!! My thoughts and prayers are with your family during this very difficult time.
Amanda
Praying for your family. Know that God had already used you to minister to me today. Your faith is a blessing to this hurting mamas heart. Love to you all.
Aneesa
God is able.
Leah Kirk Jimenez
Amen Aneesa!
Dana
Words can not express how sad I am for you and your family.. God bless you, your family and most of all your beautiful little girl. You all will be in my thoughts and prayers and like you I’m praying for a miracle for your princess.
She’s so lucky to have you both as parents and I’m sure she knows that. Miracles happen God is great!
Kat
Amen! He is the Creator and giver of life! He is able to do immeasurably more than we can ask or imagine! I’m praying!!
AimeeL
I couldn’t just help but bawl my eyes out. We will be praying for you, your family and precious baby girl! Peace, comfort, and strength during this hard time. Sending love and prayers your way!!! xxxxx
sarah w.
You and your family are in my prayers. God never gives you anything you can’t handle. Even if it doesn’t feel like it at the time, you will be able to handle this very difficult time. I am sorry to hear the unfortunate news but please know that I am praying for you. Have FAITH. God make miracles happen all of the time. Many blessings.
Alima Friar
My prayers ask for the highest and best for you and your family as you love your baby girl and the gift of this precious time with you all.
Jean
Im so very sorry….My prayers and thoughts are with you and your family.
DalhartCHL
I want so badly to give you words of comfort that only time can heal. I finish this month out having lost my grand daughter on May 8, 2014. She was a beautiful site born to my son on May 2, 2014. Within hours the doctors realized something was going terribly wrong even though she looked perfect. She had a rare genetic disorder which took her in a matter of days. I felt like I had been through the worst of life. Watching my son’s heart shattered and loosing a grand baby could not compare. We did not question God but as a family we spent every minute we could with our sweet grand baby. Our hearts, tears, and prayers are with you!
Audrey
My heart is breaking for you right now. What absolutely devastating news. Treasure every moment of the rest of your pregnancy. Aila knows you, her dad, & big brother. She is comforted by the sound of your voices, by the love you all share. Talk to her. Sing to her. Read to her. Make memories. Whether your time together is limited or not make happy memories everyday. My thoughts and prayers are with you all. Revelation 21:3,4.
kriso
Danielle, I am praying for you and your family.
Follower
I don’t know what to say. I don’t know why so many of us (perhaps all of us if we asked around) have to endure such crippling hurt and disappointment in what seems like an otherwise beautiful life. It seems not right, not fair…
A woman on another blog I read recently lost a baby. Her story is different from yours, but perhaps you can take comfort in reading it. This is her initial post on the subject, but there are others throughout the year as she comes to terms with what happened…
https://dresscorilynn.com/2013/06/25/one-who-does/
My thoughts and prayers are with you and your family. Aila will always be with you, and a part of you…even if it isn’t on Earth.
Casey-Lee Hoffman
Danielle, Ryan and dear little Asher, I cannot even find words to say how sorry I am to hear your news. Please know I’m sending love and comfort from Australia, and prayers for precious Aila xoxox
Alyssa
Praying for you all. God bless you as you go through this.
heather
I am so saddened to hear this, for you and your family. You and your family are in my thoughts and prayers.
Nancy Nielsen-Armstrong
Praying that you find strength and comfort In this very difficult time. My heart breaks for you and your family.
Christa
I’m sorry you’re enduring such heartbreaking news of the child you had hopes and dreams for. Have you considered perinatal hospice? You can find a list of organizations that provide this service at perinatalhospice.org. If no one is located by you, feel free to contact me and I’ll send an email out ([email protected]). Blessings to you as you travel this difficult road.
Lisa
Praying for a miracle, peace, and healing. I am so sorry for your pain.
lonedoggy
So sorry to hear of your bad news…prayers for you and your family…from Toni Kaste
Debbie
Keeping Aila, you, Ryan, and Asher in our prayers for strength and peace.
kylieschildcare
Prayers for you. My friend has 2 children with this and they are doing well. When they were born the girl had hip and leg breaks but she is 8 years old now. The little boy must be about 3 or 4 years now and he had a few more breaks when he was a baby. Both legs in plaster casts and and his arm but they are both doing well. Please be positive and stay strong. Thinking of you. Xx
Robin
You don’t know me either, but I can tell you that God is taking care of things for you, is around all of you, and things will be as they should according to His will. I will send up a prayer for all of you. You stay tough….you can do this. You have to be okay for Asher and your husband. Focus on little things and let the big stuff go once in a while.
Julie
Praying for you and your sweet girl! My heart breaks for you.
Deb
My heart goes out to you and your family. We were in a similar position over 7 years ago. My baby had trisomy 13 with similar, horrifying issues and outcome situation to your precious Aila. We were asked to make the decision as well. God knew I was not capable of that and called our daughter home just before her second trimester. Almost a year to the day later my healthy baby Joey was born and he is the love of my life. I’m crying for you as I write this and I pray for you and your family. I know better than to give you any advice, just know you are loved, one mother to another. Blessings.
DeneenCook
You re an angel. Thank you for sharing. ❤️
Terri
My granddaughter, Kendall, was born 7 years ago with Trisomy 13. It was never detected during my daughters pregnancy. Kendall survived for 50 days and only enriched the lives of her family. She received more love than one could get in a lifetime. She also left behind more love than she was given. As difficult as it was, it all turned into a precious gift from The Lord. She was our “brave little soul”. God bless you and your family but remember to look for the beauty in this situation. After all, she is a gift of God.
ja
I am praying for all of you!!
Tiernan's Mom
https://www.nowilaymedowntosleep.org/
shall
Sending prayers to you. While there are no words, our tears and prayers are with you.
Liz Wolf
Prayers for you as you go through this very tough time. Tears also, even though I don’t even know you. My “mommy heart” is broken right along with you.
Amber Bowers-Steele
I am so sorry for the pain this news brings you and your family. I truly do understand how you feel. I too was given this kind of news at about 20 weeks along with the suggestion to terminate the pregnancy. My beautiful daughter Miranda also was born with Osteogenisis Imperfecta along with Marshell Smith syndrome. I was told she wouldn’t survive one day, then one week, finally one year. Miranda is now 19 years old and the longest known living child with her condition. Although she does not have the kind of life I had imagined my child to have, she has had her own very special, incredible life. Never give up hope
Sarah McLain
Praying for you and sweet Aila… and believing for a miracle! He is faithful, even in the midst of our grieving and unknowing. Thank you for sharing your life and testimony. Prayers for comfort and peace.. and Joy! during this time…
Lynn
Even though it doesn’t seem like it, His plan is perfect. Prayers!
brittany
as a mother who also has a toddler boy that came after a miscarriage and now pregnant (with a girl!) during the same time as you I have felt in some way we are on the same path of young family love and light. it breaks my heart to hear thar you guys are going through this. its hard to find words to say that feel like the right level of acknowledgement and comfort during these times. I am keeping Aila close in my prayer. wishing you and her a miracle during these difficult times
Meredith
Oh my, I’m so sorry and so grateful you have your perspective of faith to get through this difficult time. Prayers for your family and, especially, your little girl.
[email protected]
I can’t even being to imagine how you & your family are feeling right now. My heart is breaking for you. I’m so sorry. Aila & the rest of you & your family will be in my thoughts.
Bonnie Rose
you’ll have so many comments and I don’t know if you’ll see this, but I wanted to tell you that you are in my prayers and thoughts. 8 months ago my son was stillborn and the pain is unbearable but with God we make it through. I want to share this song with you and I hope that it comforts you in some way.
Love and Prayers
Selah – I Will Carry You
https://youtu.be/pxZhEcTzn6Q
Michelle Hiatt
When the Israelites were pinned between the Egyptian army and the Red Sea, it seemed like there was NO way out -a helpless situation! Moses told the people, “Don’t be afraid, Just stand still and watch the Lord rescue you today…the Lord himself will FIGHT for YOU. Just stay calm.” Exodus 14:13 Praying and believing that the Lord will FIGHT FOR YOU in this situation and that his POWER would be made perfect in your weakness! HUGS!
sandy
Just think about what is right and caring for the child. Put away any thoughts of what is “right” for you or “right” in the eyes of other people who are not responsible for this blessed little soul. God bless you and little Aila.
Amy
The unexplained is the hardest to fathom. Why does anyone have to suffer? Especially an innocent baby not fully formed yet? But in everything we must trust God. Your family has my prayers. xoxo
jaysgirl_hiccups
praying for you and your family. sending love and hugs.
Geneva
I am very sorry to hear this news, but what a beautiful choice you have made to carry your sweet daughter for as long as God allows. I will be praying for her and you all, and I will start offering up some of my own early pregnancy discomfort for you and your daughter. Thank you for your beautiful witness to life.
KellyB
Prayers to you and your family.
Pamela
There are no words made to respond to this. Your family is in my prayers. God Bless you all ♡
Kylee
What a strong and beautiful post. Thank you for sharing! Sending lots of light and love to your family in this time of sadness.
ktheaterlady
So sorry to hear. God bless you all.
Krista Janssen
Praying for you and your family <3
Truly heart breaking 🙁
Barbie
I am so very sorry. My heart is breaking over this news. I am keeping you and this precious little one in my prayers.
Sharon Laechel
Abby. I am so very sorry that you and your family are going through this heartbreaking time. I will pray hard for all of you..God Bless you for being so brave.
Emily
So very, very, very sorry. I lost two little ones (due to extreme prematurity), both at 22 weeks and so I know there are no words. My heart aches for you and I will be praying for you and your family.
Juanita
Joining with you in prayer. God is the author and perfecter of life, and he can show us his miracles! Bless you for your faith in this time!
Nic
I am praying for you and your family to find peace and solace during this difficult time. Your blog and Facebook heap blessings upon so many with your healing information, and I pray God returns those blessings to you ten fold.
Candice
Praying for you and your family.
Ange
First of all, no words can express how sorry I am and at the same time so grateful that you have the hope of heaven someday. That you know you’ll see your little girl again. “I will carry you” is a beautiful song by the group Selah when one of the wives of a man in the group was expecting their daughter and found out similar news to yours. It may help you in your grief. Also the blog “bring the rain” is by the same lady, at some point it may help you to read their story. Also, you might want to look into Now I Lay Me Down to Sleep as it offers free portrait type photography when your sweet girl is born. I’m an infant bereavement photographer, so not trying to promote anything…I just know some things that have been helpful to people I work with.
Viriam
I am so sorry, tears in my eyes, sending so much love and light….BLESS you are in my thoughts and prayers…..Sat Nam
Gail Carico Bryant
All I know to say is that you are in my prayers!
Shannon@ChickensinMyKitchen
I am so sorry. Praying for your family tonight.
Sandy Rees
So sorry. Praying for your sweet family
Karen Beaulieu Tudor
Dear Jesus wrap your mighty arms around this family and hold them close to your heart. Show them a peace internally and a joy beyond comprehension. Father you are the maker of all things even of this baby girl Aila, You are in charge of miracles. This family needs your mighty touch. Please touch this child even now while she is in her mothers womb with your strong gentle hands. In Jesus name I pray. <3
Summer Fernihough
Danielle, Ryan, and Asher…I am so sorry for this news on your precious Aila. I know y’all already love her so much. The faith, grace, hope, and love you have shared while writing this is a beautiful showing of your love for Aila and for Christ! He knows your pain and He knows your hopes, the desires if your heart. He does, at times, give us more than we can handle because if we could hamdle everything, we wouldn’t need Him. However we do need Him! Lean on Him in every way. My prayer will be for healing, and one way or another healing is what Aila will have whether here on earth or with God in Heaven. I do hope for a miracle here on Earth. May His true peace be with you and your family eaxh and every moment.
Melanie
I’m so very sorry. My thoughts and prayers are with you and yours….
Alison Clare
How heartbreaking…you are very brave and I thank you for sharing your story and reminding me how fortunate I am to have what I have. Your words have touched many and I hope the compassion felt for your family enables you to move on strengthened through this incredibly difficult experience.
Kelly Kriefall
Your strength and faith through this horrific trial will touch literally hundreds of thousands of lives. God sent Baby Aila to a family who would love her unconditionally as you are. Aili can feel your love. Prayers for you and your family. God is truly using you as a beacon of light.
CarolM
So sorry for your pain… and He walks through the valley with you every step…..
Wendy Rutherford
Prayers for you and your family. ❤️
Sara
I am so sorry. Sending love your way. And hoping that the heartbreak I feel for you can ease the enormous amount that you are carrying.
sara
I’m so sorry to hear you are going through this difficult time. God has a perfect plan, even though we may not understand it.
The links below are from a blog of a high school friend and a friend I met in GA. Both of their little boys had encephaly and they chose to continue the pregnancy. Maybe it will help in the difficult months ahead knowing that there are other families that go through similar situations.
https://oursweetboygraysonjames.blogspot.com
https://polkadotsandricrac.blogspot.com/p/briars-story_29.html?m=1
Marsha Sweat
praying so hard for your family
ap
Praying that God’s arm will wrap you and your family up and that peace beyond understanding will overcome you . John 14:27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid
Andrea Fuentes
Hugs, good thoughts, and prayers sent your way. Soo sorry to hear this news… went through a miscarriage myself and have a child with special medical needs… my heart goes out to you. -from a reader of your wonderful blog,
MammaofasonwithOI
My son Evan was also given this diagnosis at 20 weeks. He is 15 months old now and thriving with Type 3 OI. If you have not found our group yet please ask to join the OIParents group on Facebook. We can offer you encouragement and hope.
NancyE
We are so very sorry to hear this, we are praying for you and your family as you walk through this difficult time. God’s hand is on your family, and His strength WILL be perfected in your weakness. Rest in Him and His love for you. He will sustain you!!
Steph
I am so sorry for what you and your family are going through!
Grace
I’m so sorry you are going through this, Danielle. I lost my little 8-year-old sister two weeks ago, and I am still buried in grief. Sending you love, light, and strength to find joy in your days.
Corianne
So many prayers for your precious family.
Sizzle
I am so very deeply sorry. Love & light during this difficult time.
Karen Taylor
Praying that God wraps you, your daughter and the rest of your family in His arms of Comfort and Peace. My heart is heavy for you. I will keep you all in my prayers.
Laura Bartlett
Prayers and love for your whole family.
Sandi
I will pray for you. I lost a son 12 years ago to a “lethal” condition and carried him till birth and then said goodbye. It is the hardest thing i have ever had to do as well.I am so, so sorry this is happening/ (((((((hugs))))))))
Liz
My heart goes out to you. One million prayers for all of you and your sweet baby, Aila.
Marcia
Sending hugs and prayers. Know that the Holy Spirit is interceding for you with groans as words are too trivial. I am praying for a hedge of protection, for wisdom, strength and courage. God chose Aila before the beginning of time and loves her. He will carry you through this time and at some point will restore what the locust have destroyed.
Michelle
Danielle, my heart goes out to you and your family. So terribly sorry to hear your heartbreaking news. Cherish each day. You and your family are in my prayers. God bless!
Courtney
I am so sorry for what you and your family are going through. I hope you find strength and light to help you all through. My thoughts and prayers are with you all.
jackie
My heart is aching for your news. I am a recently new reader too. I will keep you in prayer.
Linda
I am so very sorry for your heartbreaking news. Let God wrap his loving arms around you & your family. Find comfort and guidance from him through the difficult days ahead. You are in my thoughts and payers. Gentle hugs.
Larry Wolfe
Your words have touched me deeply Danielle. I was copied on your blog today, which I have never seen before. I have been prompted by Our Lord to give you this gift of healing. Pray this prayer every day or even more than once. But pray it with full faith and trust of a child in Jesus. Knowing He will heal Aila and He will heal your broken hearts. Pray it like a child and trust Jesus with all that you are. Do not give in to losing hope.. that is not of God. satan works to make us lose hope because he knows when we lose hope, it shows lack of trust and faith in Christ. Rebuke him and those thoughts and emotions he brings. God loves you so very much and He will not forsake you ever. Just believe and trust Him.
To cure the mind, body and soul
“O dear Jesus, I lay myself before You, weary, sick, in pain and with a longing to hear Your Voice. Let me be touched by Your Divine Presence, so that I will be flooded by Your Divine Light, through my mind, body and soul. I trust in Your Mercy.
I surrender my pain and suffering completely before You and I ask that You give me the Grace to trust in You, so that You can cure me of this pain and darkness, so that I can become whole again and, so that I can follow the Path of Truth and allow You to lead me to life in the New Paradise. Amen.”
__________________________________________________
My dearly beloved daughter, as this Mission
continues to grow and expand around the world, it will come with new
miracles, which, in My Love and Compassion, will be given to those who
suffer terribly. When I came the first time, My Mercy was extended to
those souls who needed My Help.
There will be those who will be infiltrated by a lack of faith and
who will be afflicted by terrible physical suffering. Those who come to
Me, I will ease their suffering. I will do this to ignite the faith of
their souls, but it will be by the Power of the Holy Spirit, by which
they can only be healed.
Bring Me your sufferings. Bring Me your worries. Bring Me your pain.
Come to Me, through your prayers, and I will listen. I wish to take you
all in My Sacred Arms and protect you.
Please take this new Gift of Healing I present to you now. It
is in the form of a Crusade Prayer and will cure you in mind, body and
soul.
By this prayer, I bequeath the precious Gift of Healing. By
reciting it you will know that this request for help will bring down
upon you, and those you include in this prayer, great gifts from Heaven.
As such, it comes with a special protection for the renewal of those
lost, who are unsure of their faith, and who feel a sense of weariness.
They may be suffering from doubts. They may be suffering with physical
diseases, which are destroying their ability to allow Me to bring them
peace, love and comfort.
To receive this blessing for healing please recite this Crusade Prayer.
Crusade Prayer (94) To cure the mind, body and soul
O dear Jesus, I lay myself before You, weary, sick, in pain and with a longing to hear Your Voice.
Let me be touched by Your Divine Presence, so that I will be flooded by Your Divine Light through my mind, body and soul.
I trust in Your Mercy.
I surrender my pain and suffering completely before You and I ask
that You give me the grace to trust in You, so that You can cure me of
this pain and darkness, so that I can become whole again and, so that I
can follow the Path of Truth and allow You to lead me to life in the New
Paradise.
Amen.
It is your faith that must concern you, first. Then, by the grace of
My Mercy, will I respond to your request for healing, according to My
Holy Will.
Your beloved Jesus
Nicki Reedy
Standing in agreement with the Lord plans of y’all’s lives. Praying angel hands just cover your sweet baby girl. Peace and love and joy over each of you. Thank you Lord that you are the ultimate healer!!
Pam Sizemore Render
there are no words to adequately express the sorry and sadness that I have for you and your family. I pray that our God of All Comfort will hold you close and will fill you with His sustaining strength as you walk this difficult road. You will be in my prayers.
Cathy smith
So sorry for your heart breaking news. Prayers to you and your beautiful family..
Trisha
I’m so, so sorry. Will pray for your precious family. May God be gentle with you, and may you find comfort in His peace. I lost a baby at 17 weeks, and though it was a deeply dark time, I found that God was there with me. Even in my deepest grief, his compassion seemed to be so gentle with me. May you find His grace and gentleness and peace even as your hearts break.
Nikki
My heart is broken for you and your family. I also went through something very simular and know the toll it is and will take in you. I pray you find a comfort or peace during this. I know there are no words that will help. I will pray for your entire family.
Patty Piniarski
Praying for you. You all and your baby girl are in His hands
A mourning mother...
I lost my 1st born son on Dec 26, 2012 while my situation is much different from yours. I had no complications and they could find nothing wrong with him yet he is still not here with us today. It doesn’t matter how it happens the pain is just the same. No one should have to bury their child or suffer the lost and pain knowing that they will not be with you in the morning. However God will in time restore what you have lost. We go through these trials so that we can be a blessing, encourager, and a symbol of strength to others who are struggling. It has not been easy, and I have not received my blessing yet but I know it’s coming. And I can rest at night knowing that one day I will see him again. Seek comfort in The Lord and he will wrap his arms around you. Remember he lost a son to and in the most horrible way. He knows what you are going through and is mourning with you.
jackee5150
God Bless you all. We will pray!
Ashley Dale
Angie Smith, who wrote Chasing God, has unfortunately experienced a similar situation. She is an inspirational woman just like yourself who is choosing to see her pregnancy through. She may be able to provide support if anything through her written word and God’s written word. I pray for a miracle for you and your family. I know that Aila will feel the unconditional love that you already have for her. I will continue to pray for you and your family through this time.
Dawn
In my prayers <3 Praying God surrounds you, fills you, settles upon you with His perfect peace.
Becca
Praying for you!!!
Sandy
You all shall definitely be in our prayers. After reading some of your post to my husband but being unable to finish reading it out he read it for himself. His comment after, just sums up our thoughts, “just makes you want to fly over there to give them hugs”. Our prayers and hugs are with you all.
Cynthia
As you are all in God’s hands I add my prayers and love for your family
Mary Jackson
Thirteen years ago I suffered a similar situation with a twin pregnancy. But God had a plan for me.
I pray that you will be blessed with acceptance. Things are not always what they seem in His divine plan. My heart goes out to you in your time of pain
Much love to you
Becca Southwick
I’m so very sorry. I’ve tears for your family and prayers.
Amy T.
Much much love with you as you go through this time. Praying for a miracle baby.
Deena Carico
May God hold and comfort you during this time. My heart is aching for your family – please know you will be in my prayers and my thoughts.
Carmen
Dear Danielle and Family,
I am so very sorry for such sad news, words can’t say how sorry we are. Thank you for sharing with all of us such private and sad news and hope you like this poem I found.
Tiny Angels
Tiny Angels rest your wings
sit with me for awhile.
How I long to hold your hand,
And see your tender smile.
Tiny Angel, look at me,
I want this image clear….
That I will forget your precious face
Is my biggest fear.
Tiny Angel can you tell me,
Why you have gone away?
You weren’t here for very long….
Why is it, you couldn’t stay?
Tiny Angel shook his head,
“These things I do not know….
But I do know that you love me,
And that I love you so”.
Author Unknown
Pamela
I am so so sorry! I can’t even imagine! All I can saynow is I am praying for you!! May God heal her and give you strength to believe him for his best!
Nichole
Sending you love from Denver, Colorado. There are no words one can provide, only blessings and prayer for you and your family.
Renee Sattler
I cannot imagine what it’s like to go through this. You’re in my prayers
Tara
I am so sorry to hear your news. We lost our little girl last year at 20 weeks to a rare genetic disorder. I found an excerpt by Tami Kent that filled my heart. “Here’s what I know about the other side: women carry the doorway to this place within the womb. The womb is the connection to the spirit realm which all spirits enter.” And no matter how long or short, this beautiful soul has touched you, changed you, made you stronger, your family closer. What a gift. To Remember what is important and to be thankful for the beauty in your lives. My thoughts are with you and your family. May you find peace in the hills and valleys of emotion.
dmhenriks
Tara, I read your words and tears of joy flowed easily. Danielle and Tara, we also were diagnosed early in our pregnancy that our dear Lily had a rare and incurable heart disease. They did surgery as soon as she was born and lived a bit beyond, but it was more than we expected. Carrying a child that you may never really see or know is something that God had planned for me (looking back 28 years) but awful and gut wrenching news. There are no words that I might proffer to you, no wisdom that comes from her death, and yet there was profound joy, love and a glimpse in to what we all will encounter one day – our passing. Living with a child or losing a child with a profound defect is startling and out of place, isn’t it? Other women give birth so easily – why can we not? The answer is in the heavens and the wind, but you – my unknown sister have the strength of hundreds behind you and know that you have a huge prayer chain in your family’s name. Blogging is helping the world, and you are courageous for your honesty – I wish we would have read something like this so many years ago. You are changing lives here – through your devastation, she will live forever.
Audrey
Praying. My heart breaks for you…
Debby
I am so sorry to hear your news. I applaud your decision to continue the pregnancy. You will be able to hold her and create some memories no matter the outcome. I am a NICU nurse and have taken care of several Babies with OI type II. There is an organization called Now I Lay Me Down To Sleep (nowilaymedowntosleep.org) that you can contact to take professional photos. Very tastefully done, professional photographers who volunteer their time. All free of charge. They can be at the delivery or shortly after. Whatever you wish. I used to call them in when we were removing life support. My thoughts and prayers are with you and your family.
Hayz
My heart goes out to you and your family during this difficult time. May you find the strength you need to carry on. You are in my prayers xo
Debbie Tarvin
Danielle, You are an amazing woman with great strength. You have already endured more than most can bear. My heart is heavy for your family at this time. Reading the comments of others, you can see that you have a lot of support, love and most important…prayer.
Elena
I do not understand why all this suffer,but I dare to tell you what I sincerely think,although I have tears in my eyes and a broken heart : You are really a great mother and woman!!! God gave Aila to the best mum and family she could ever had. I am sure that she is totally feeling all your love and God will reward you for this one day. I will pray for you and your family. I hug you tight. Thanx for sharing.
Risesan.
I have been through similar disbelief and mourning….my heart breaks for you. It is a dark time…I pray there is lightness and peace for you and your family. Take time and take good care of each other.
Cheryl Karge
Please join our families. (SEARCH ON FB OI Parents) Our son is 5 years old with OI Type III Severe. Please friend me on Fb as well. You are doing great and keeping your sweet little girl is a gift that you will cherish.
Georgia
I’ve always figured that only the most sacred and precious souls are given a life where their only job is to receive love. Imagine that. A life where you never know anything but love. No pain, no sadness, no grief, no confusion, etc. Only love, pure and primal. I honor you, the mother, who has been given this seemingly impossible job to nurture, love, and grow this baby for however long she needs you. Sending you love and peace, from one mother to another. We are with you. We are with you.
Lynette
You are all in my prayers. Thank you for trusting us with your heart. Take all the time you need
Abreck1
So sorry to hear this. Thoughts and prayers being sent your way.
Eleanor
I am so sorry. My thoughts and prayers are with you.
Lesley Lowes
Light and love sent your way. Our hearts, thoughts and prayers are with you and your family at this difficult time.
jellybean
May the God of all Comfort – Comfort you in your time of need. I will keep you in my prayers – that God will give you His strength and wisdom for all that you are facing.
Adrienne Holeman
Much love and prayers sent your way today and every day. God is good all the time. He has many lessons in life we don’t understand. I pray for peace in your hearts. ♡
ALY
Holding space for you. God bless and comfort you and your family.
Larry Wolfe
Pray this Prayer every day and consecrate yourself and your family to God Our Father.. God Bless you always +
Erin
Gods Blessings to you and faith be yours like you’ve never known it before.
Jen
Praying for your family. You may want to read Angie Smiths Book, I Will Carry You. It speaks of her experience with carrying her precious daughter to term knowing she would not live. Angie is a friend of mine and is a Christian and wholly leans on God to carry her as she carried Audrey.
susan
Praising God for you and for Aila and praying for your strength and shalom, God is with you and He is able…my mom heart breaks with you. Blessings to your whole family, hugs, too. Numbers 6:24-27
Lori
Praying for a miracle.
Racheal G
Send all my prayers and love to you and your family
Jennifer Erickson
no words. tears and prayers.
Dawn Taylor Beard
I was reading your book as I came across this post. As I look at your beautiful smile it makes me want to cry thinking it has been wiped away. I will pray for you every time I look at your picture until you say your smile has returned. God bless you
Gale Dennison
You are highly favored among women and truly a blessing to an unknown multitude…why you have this journey I will never know….your little girl’s name is beautiful just like her mother…and she is safe and God is preparing a place for your little angel…you already know her…praying you get to meet her….God speed!
Erin Schaafsma
It is times like this when I wonder how some people seem to get more than their share of heartaches. Your words sound so positive in the hopes that God has a plan. But I know you will have days when it doesn’t seem so. May you be surrounded by loved ones in these times, and trust that, yes, He holds you in His hands.
caronnect
I can only send you my empathy for a very difficult time. Our son died at 41 weeks. Just remember that you need to look after yourselves both physically & emotionally. Be kind to yourselves as you go through this time. I send loving thoughts to Aila.
Kimberly Branham Lowery
There have been numerous families given the same detrimental news. My son has type 1 oi the milder type and we were told his was type 2 and severe from in utero breaks. Put your faith in god and pray everything will be alright. There are so many new medicines and treatments to give these ok kids a good start at life. Join OI parents and they will help you tremendously.
matches
Life, even so brief, is precious and tender. Our lives together share with you the loss in yours. I am sorry to hear of the pain in your family. I am sure she feels your love and kindness and will until she returns to where she came from.
Tami Cleland
Praying God hide your and your family under His mighty wings. Prayers for comfort, strength and healing <3
Mechelle
Sending loving thoughts and Blessings ~
Juley
Aila and your family will be in my prayers. God’s plan does not always make sense to us but he has sent you this sweet girl, even if for a short time, for a reason. I pray for comfort and peace for you during the rest of your pregnancy.
Donna Nulton
God is in contorl. Knows what is best for Aila, Asher and you. GOD WILL PROVIDE WHT STRENGTH YOU NEED. God is your comforter as well. I surround you with light and love and a covering of Angel wings.
Amy Queen
Oh wow honey…prayers to you and your family…may the Lord wrap his arms around you as only he can.
Jocelyn
I am so sorry and pray that God keeps all of you in his hands.
Corrie Sebire
oh I’m so sorry. No one should have to go through this and I can’t imagine hearing that news. Your decision to leave it up to God is inspiring and courageous but I am just so sorry that you are having to go through this. I pray for God’s comfort and strength and that He carries you and your family through this. I will say a rosary for Alia and your family tonight. God bless and please know that you are not alone but are in the thoughts and prayers of so many.
Melanie
You are all in our prayers.
pwing123
The Bible says to store up your treasure in heaven….and you will have plenty! I too have a 3 year year old and two from the womb there. We will spend eternity with them! And the Lord knows exactly what He is doing. He is trustworthy. Love and prayers for your family!
Lara
So sorry for you and your family. I don’t even know how I would talk about it to anyone! Live every day like it’s the last.
Janet
Please do not be discouraged. I know of a young man in Texas that had the same diagnosis, he is a young adult now. He was not supposed to live because of his lethal form of OI, but he did! Prayers for you and your baby!
Tania
Please accept my deepest sympathy. Our hearts are heavy. Your little angel is with God and she will always be with you. Sending love and prayers xo
Dori Fontes
The miracle is that God has chosen you to hold her, and your husband, too, to BE her parents ….I hope you get to meet ….as she passes to her next journey……prayers to you ALL, you sound like a very strong soul….
AliS
I have a daughter named Andrea who was also born with this disease she is now 37 years old and has 4 children of her own. MIracles can occur.
Chez
I am so sorry for you and your family I cannot imagine the pain you are going through sending healing prayers for all of you.
Survivor Carmichael
Praying for strength and peace for you, your family, and your precious little angel.
Kim Humphries
Hugs to you and your family – and blessings – in my thoughts and prayers to you.
Kelly
Danielle, we do not know each other, even though I feel as though we are friends. You have brought so much health and happiness to our family through your wonderful recipes. I have enjoyed “getting to know you” through your blog and FB posts etc and I sit here, literally crying tears, for your sweet baby girl. There are no words I could possibly say to make things better, just know I pray for you and your family during this terribly hard time. (((hugs)))
Tina
I’m so sorry to hear about your loss. My heart goes out to you and your family.
Sarah p
Wow! I am so sorry to hear this. How heartbreaking! I hope you can find a Now I lay Me Down to sleep photographer in your area when she is born so you can capture your moments with her forever. My heart goes out to you and your family. May you somehow find peace in all this sorrow.
Lauralee Finley Post
Danielle, can I private message you somehow? I know of a family here in Omaha, who received the very same diagnoses (4 or 5 years ago). I work in Labor and Delivery and this family was amazing. They worked hard at celebrating the life the their baby girl was having during the pregnancy, took her to the zoo and other such places, made photographs, so they could remember the times (during the pregnancy) that they had their baby girl with them. When they came to deliver, we set them up in our largest room and they gathered along with family and friends to have a big celebration of life as this little one came into the world. Grammas had made blankies, and special dresses. They celebrated as she came into this world. Her story is nothing short of amazing and I could put you in touch with her blog, and maybe even Evie’s mom. Praying for you and your miracle.
Lori
Bammy
Praying for your family. Just heartbreaking.
Janelle
I am so unbelievably sorry to hear of your devastating news. I am so sorry; my heart breaks for you and your family.
Summer
Praying for you and expecting a miracle!
Teri Derry
Our hope comes from KNOWING that God is WITH us in ALL things. Lean in, keep leaning in.
John C. Key MD
My prayers are going up for you and your baby.
Kandy
I am so sorry. You have been heavily on my heart this week. I believe that was from Spirit of God prompting prayer for you before you even knew. I continue to prayer for your baby girl and your whole family. I pray that heavily give you the strength and peace for this time.
randi rooney
Sometimes it’s crazy the path God chooses for us. Until this past March I didn’t even know what a molar pregnancy was unail I had one. I pray that this brings you somewhere amazing and that in some it can be a blessing to you or to someone else. I will pray for you and your family. I do have to say I am so glad I found your blog.
Isabelle Goyer
It’s heartbreaking… My thoughts are with you… I don’t know if I do the right thing but I feel I must share with you this link… NILMDTS provides family the gift of remembrence photography… https://www.nowilaymedowntosleep.org/
Chris Mucklow Meyer
prayers for you and your family <3
leisa
hugs to you and your family
Susan Jones
Praying and thinking warmly of your family. We trust God with precious Aila’s life.
Jen
I am so sorry to hear this news. Lord, please watch over Danielle, her family, and beautiful Aila. Guide them through this difficult time and fill their hearts with peace.
Mel
Oh honey, you take all the time you need. We’ll all be here ready to support you in whatever way we can when you’re up to it. Please know you and your lovely family are in my thoughts and prayers.
Beth Devine Miller
My heart is breaking for you right now. As I read your blog, I was immediately transported back to my own journey with our son Evan 7 years ago…went in for routine ultrasound to find out his heart was severely deformed and he was in heart failure. Your words transported me back…the uncertainty, the every day not knowing, hoping for a miracle yet trying to prepare for the worst. Knowing that you have other children that need a mom to laugh and love on them. The days can seem so long when filled with all the uncertainty. EMBRACE the fact that every day your sweet Aila lives is another day to be her mom, dad and family. Know that right now she is in a place where she is warm and safe and loved. Praying, praying for you and your family. For comfort for your aching hearts. And for you to experience the peace of God that passes all understanding.
michelle
God we are praying for a wonderful creative miracle in Miss. Aila’s life. You created her for a very special purpose and her name was not chosen by accident ( bringer of light). We ask Lord Jesus that you will allow her to let her light shine bright in this world. Let her be a wonderful miracle for all to see that you are still working in the miracle business today. We pray that everyone that comes in contact with this precious little one that their lives will be changed forever. We pray that her strength like an oak tree and bringer of light will be glory to you father. Thank you Father for loving us and guiding us through.
Start Arensberg
Blessings come in many forms, and it just so happens yours is this precious life that continues to develop in your womb. A mothers love and attachment to her child is one like no other. What you share with her in utero, and her you, is even more special in these early days. Soak in every moment of every day and experience.. for now it holds so much more meaning. She can feel you, as young as she is.. she knows her mommy. My hopes, prayers, and energy go out to the universe to give you courage for the days ahead.
Katie
Sending you light and love
Coleen
My prayers to you and yours. I’m truly saddened by your news.
Alicia
What a great testimony you two are to keep your pregnancy going. God is a great god and he will get you through this no matter the outcome. At 20 weeks of my 2nd pregnancy we too found out our baby girl had a disease that she could not live with. We carried her till 34 weeks and she lived for 20 minutes. I pray that you get time you need with her. P.s. we have had two other healthy babies after her and another due in two weeks.
RC
I worked Labour and Delivery as a new nurse in Dallas Texas. I realized that my ideas of what I would do in certain situations was challenged. I remember speaking with a 4th year resident who discussed this same situation with his wife. They had decided that they would not end the pregnancy and enjoy their baby for the time that God gave them. I had not considered this choice as I saw so many make a different choice. He opened my eyes to another option. I had decided than what choice I would make if I ever found myself in this situation. Sometimes we are called to make very difficult decisions. I pray that as difficult as this time will be that God will bless you and that your decision shows how you value life! God bless.
Michelle Bunker Fynan
Hi Danielle,
I’m so very sorry to hear about what you’re going through. I was directed to your blog by a friend because I have OI type 1. My husband and I were also told at our anatomy scan for our little girl (due September 19) that she had a femur fracture and a probably diagnosis of OI. I want you to know that I’m praying for you, your family, and Aila. I also wanted to tell you about the group “OI Pregnancy” that I belong to on Facebook. It has been a wonderful support for me and I hope it can do the same for you. Through the OI Foundation (www.oif.org) I’ve had the pleasure of meeting quite a few individuals whose parents were told they wouldn’t survive…and these people went on to not only survive but do amazing things in life. I’m here to talk if you’d like, and I wish you the very best.
Sincerely,
Michelle Fynan
Sonjamarisa
Wishing you all strength and love during this journey. Never give up hope. My friend’s daughter was diagnosed with cerebral palsy in the womb. Besides a small operation as soon as she was born, she actually doesn’t have it and has just turned one and is walking. Something they we’re lead to believe would never be possible. You seeker nutrition healing for yourself, maybe there is something else to discover that can help your baby Alia. She’s still developing. Love and light come your way each day
Mary Younkin
I have tears pouring down my face after reading this. I am heartbroken to read your news. Praying for a miracle and also for peace for your family.
Sharyn Sowell
I don’t know you but will pray. We had a similar pregnancy but our son was healed; and another which went the harder way- we went home without our baby.
No matter the outcome, I have learned that God can use it to draw us closer to Him. He does not waste a single tear.
Praying for comfort and hope; may you rest well in Jesus and draw great strength and peace from Him no matter what path your lives may take.
Megan Hart Segalla
Even though we do not know each other, we are still community. Collective thoughts and prayers are here to surround you. Love and prayers sent to you.
Angela Lukacs Prince
My 3yo son has severe OI. Please join OI Parents on FB. You can’t imagine the hope and help they can offer you.
Kim
Phil Bryde
My heart breaks for what you are feeling. Be comforted by the warm and beautiful world that you are providing your child as you go through this.
shelley
I am at a loss of words..i just want to hold you! My neice was born without a brain on my birthday..it was NOT detected prior to delivery…brought back sad memories…I am so sorry for your news and your pain…she is Gods child and is an angel preparing to fly..but i believe in miracles…so know i am praying for you and your family…xo
htt
so sorry… my prayers are with you and yours.
Brenda Hammers
I have tears in my eyes and there is nothing anyone can say that will make this better. Just know that you are in our thoughts and prayers.
Christina Speed
I am so sorry, and I know that that doesn’t begin to touch what you’re going through. Your sweet baby is bathing in your love, and I know she feels it in your heartbeat and hears it in your voice. All my strength and hope goes out to you and your family.
Kevin Eric Paul
Lord Have Mercy.
Lgedeon
So so sorry. Thoughts and prayers with you and your family.
Sandi
I am sorry to hear of your pain. I, too, lost a daughter. I highly recommend the book I Will Carry You by Angie Smith.
Kim Glenn
I live a world away and have never written to you before today, yet strangely, you feel like an old friend to me. I look forward to you recipes, pour over any advice you give, and discuss anything that I can relate to with my daughter who has rheumatoid arthritis. So I now sit here reading this and am having trouble reading the words due to the tears pouring down my face…….thank you for sharing your family’s terrible anguish at this very difficult time. I cannot imagine how you are all feeling, but if it gives you one ounce of comfort, please know that my family hold you in our thoughts
Mary
Blessing and prayers to the entire family. God bless you all.
Maxine Faith Dziedzic
Aila and Creator/God/Goddess/All-that-is, are ONE….and God/Goddess’ strength is as strong as it gets. Thus Aila has the courage, determination, and wisdom to walk in spirit
according to God/Goddess plan. This beautiful soul will fulfill her destiny.
Lisaleeh
My heart breaks for you and your family. <3
Tara Rountree Wood
May God bless and keep you and hold you in the palm of his hand.
priest's wife
thinking of you….you are a great mom to Aila
Heather Anne
I am heartbroken for you and your family. We know some of your pain, as we have experienced a stillbirth. Not the same but we do know thepain of hopes uunfulfilled. May God keep you and your family at peace through this time. Praying with you for the miracle. Please keep in mind that there are wonderful organizations to help out rhere. One that i wished i had known about was Now I Lay Me Down To Sleep.
Blessings to you and yours.
Ruth
Dear Danielle, thank you so much for reaching out for prayer for you and your family. I will be in prayer for all of u. The Lord has created little Aila in your womb and would never do that unless he sought a far better reason for it than we could ever imagine. GOD BLESS YOU!
Kathy Allison
I am so sad and sorry for you and your family. Also thankful for your decision not to end the pregnancy. I am praying for you.
Briita Noyes
Sending your family love and light.
paula rothman MD
no one should ever have to go thru that. I hope that you can find comfort in all the support that you have here. As an MD i dread having to give any sad news and continue to be amazed how people make it thru the darkest of times with courage and faith and love. know that you are not alone, you are loved and that you have the strength to move past this. THere is another baby waiting for you. I KNOW IT
Stephanie
I’m so sorry to hear this. Praying that even as you grieve, that you and your family may experience joy and peace that surpasses all understanding in this season.
Perhaps this family’s story will help and encourage you as you process. https://angiesmithonline.com/2008/01/the-beginning-of-the-story/
Or the book version of their experience, “I Will Carry You: The Sacred Dance of Grief and Joy”
Jeremy
My wife and I just lost our second child at 37 weeks and had a stillbirth. Yet I still can’t imagine what you’re going through. Hold tight to Jesus, because honestly, this is all we can do during these times. I am lifting you up in prayer…
emileerister
You are in my prayers! God will give you the strength to endure. My heart is broken for you.
Lisa
I am so sorry to hear your news. I can’t imagine what a difficult thing for you and your family to have to endure. I pray that God will wrap his loving arms around you and give you the grace and strength to endure this time. Although we don’t understand the “why’s” something beautiful will come from the ashes and will bring beauty from pain. My prayers to you and your family
jillian
So very sorry. Lifting your whole family and baby Aila in prayer.
Grace
Jesus. I declare healing over this sweet life. as it is in heaven!You came that we may have life and life abundant. I pray that over this womb and baby.
Lord bring peace and stregnth. And a miracle! That many could rejoice
Dadameg
Many Prayers your way for strength, clarity and Peace! Children are Gods Blessings even if for a short time. God has a plan for you and your daughter and he will beside you as you travel it. God Bless
Vivian
My heart is breaking for you. I am so incredibly sorry. May God give you and your family the strength. God bless.
michelle hoppes
My daughter, Kayte, Just celebrated her 13 birthday Tuesday. She was born with OI (osteogenesis imperfect) We were told in utero that it too was TYPE II lethal form. She was born with 38 broken bones. We brought her home on hospice. She started on an experimental medication called Pamidronate (that was 13 years ago, now it is used routinely) She walks about 25% of the time, uses a walker about 25% of the time and is in a wheelchair 50% of the time. She has dwarfism as well. BUT she is an honor roll student. She has spoke before the congressional Gala in DC. She is a top fundraiser for the Make A Wish foundation. She has one the state of Indiana science fair three years. SO FULL OF LIFE> MY BLESSING FROM ABOVE. feel free to find me on facebook. Much love, Michelle Hoppes
Sarah
I am SO SORRY to hear this. I cannot imagine more devastating news. I pray that God will give you the strength to make it through the future weeks and months and years. You will be in my prayers. ((Hugs))
Bev
This is heartbreaking news and I am so sorry for you and your family. I had two children that were still born and four others die as adults; all my children are gone. After reading the comments, there is a whole host of readers who have experienced the similar tragedies and will be effectively praying for you, including myself. God bless and be with you and your family.
Tzipi
My thoughts and prayers are with you.
Sara
Praying for all of you! May you feel God’s presence closer than ever at this time!
Deborah Tabor
So very sorry reading this heart wrenching development. I will include you in my prayers.
Mel Potter
My heart aches for you so much. The Lord be with you during this difficult time & I will be continually praying for you, Alia, & family.
Dahianna
Sorry to hear. Will certainly pray for you all. Hugs!
FiveToeDiscount
I am so, so sorry. All I can say is may the Lord bless and comfort you in the days ahead and I know your sweet girl is enjoying the warmth of your womb and the love in your heart.
TSpridge
May God give you strength through this very difficult time and His will be done – she belongs to Him and He knows what is best for her. Blessings on your family.
Krystal
My heart and prayers go with you right now. Remember though, that if it is gods will that she leave you, you will have the opportunity to raise her someday. 🙂 hugs.
Stephanie
Praying for you and your family!
Janie Alday
As difficult and heartbreaking this time is for you, Your dedication and trust in the Lord is inspiring! I admire your family’s strength both in Christ and in each other. My love and prayers go out to you.<3
Amber @ The Mom Road
Hi Danielle, I encourage you to read my friend’s blog she has just recently gone through something similar to what you’re facing. She talked a lot about how she faced the other 20 weeks and how’s she’s coping. It’s been a month since she had her son. Her name is Maria and her blog is https://mytrueworth.org. It might help.
Tante Reny
I certainly pray that our Lord will walk with you and the whole family in the next months. May He carry you when you are too weak and calm you when you are too sad.
Holly
I’m so sorry for what you and your family is facing. It so devastating to find out such news. My daughter, Carleigh, was given a fatal diagnosis of anencephaly at 22 wks. I carried her to 37 wks. We hoped to meet her alive but she was born still. The time I spent with her both pregnant and in my arms are some of my most treasured moments in my life.
I am Vice President of a ministry called Sufficient Grace Ministries. http://www.sufficientgraceministries.org
We offer perinatal hospice support both in person and online to women and families. We also have materials to offer like bears, memory books, blankets, hats, gowns, bracelets. We’d love to help you in any way we can.
Kelly
God bless you and give you peace. I pray He wraps his arms around you and strengthens you during this difficult time. praying for a miracle healing through almighty God. If not, praying for joy in this storm.
Paula
My prayers are with you now and always.
Gina
Wow, there are no words to offer. I just pray for peace that passes understanding for your family & that out of this tragedy something beautiful will emerge. I pray God binds your family with chords that can never be broken & strengthen both you & your husband supernaturally. May peace be upon you & your house. May God be with you, go before you & hold Aila in his hands. May His perfect will be done in Jesus name.
Kristine Souchereau Wolff
Prayers for you, family and Aila
Laurie Hilgers
Danielle, I pray for Holy Spirit to comfort you, Ryan, Asher & your family & friends as only He can. I am choking back tears for you. All of us will hold you close in prayer.
Brandi
I am so sorry. Our family will be praying for yours. God has a plan. Put your trust in him always.
opus88
I cannot fathom what you must be going through. Just know that you have with you the strength of a large community that you brought together. The lives you have touched are innumerable, and your little one is with you for a very specific reason to touch your lives as well as ours. May you one day soon clearly realize what her life – no matter the length – is all about. Prayers and blessings coming your way . . .
Stephanie
You and your family are in my prayers.
Ashley
You are so courageous for telling your story. I’m heartbroken for you and in awe of your strength. Sending you love and abundant light.
yuyisvg
Count with our prayers. God bless you and your baby girl.
Carly
We are sending much love and prayers your way:-)
Kristen
God knew Aila before he formed her in your womb… and God is with her (and you) now too. Just prayed for you and will continue to do so.
Kelli Hathaway
Praying for you and your little one, God Bless you all
Candace R. Wagner
I am heartbroken for you but hopeful at the same time, because I see your attitude is positive. I pray for you to continue to find the strength you will need. God be with your family.
Jenni Saunders
Sending love and prayers from Indiana. May God be with your family.
Jenna
I am so incredibly sorry to hear. Her name is ‘breathtaking.’ You are in my prayers, and my heart goes out to you.
Professor G
Sending love and strength and peace to all of you. I am so sorry to hear this news.
Dee
I’m so sorry and saddened to hear this, i cannot imagine how you would be feeling but know that you are in my thoughts
Bonnie Owens
What a heartbreaking situation! I pray that God brings you comfort and peace in this uncertain time.
Casey Woods
Please join OI parents(on Facebook). There are many people that were told this and they were wrong. It’s very hard to tell what type in utero. I’m praying for your family and your sweet baby girl! My little girl has type one moderate oi. Hugs many many hugs to you!
christine
Ugh being a new mommy and reading what your going through breaks my heart and brings tears to my eyes! Know that you and your family will be in our prayers!! Praying for comfort during this hard time.
Jayne Hagan Hazlip
You and your family are in my prayers. I am so glad that you walk with the Lord for He will carry you all through this. My heart breaks for you. And I know Aila will be with Him when she leaves this earth. I pray for comfort and strength for you all. And I want to thank you for all you do for the rest of us out here in the community. You have answered my questions over the years, and have helped me as we continue our journey with my disabled son and the rest of our family. Prayerfully, Jayne
Nicole
I’m very sorry to hear this news. Your family will be in my thoughts. Peace be with you.
Carole
Your in my prayers. I lost two, I miscarried one and one died in the womb. We were then blessed with our dear sweet William! I was 43 when we had him, so he is truly our miracle baby. He’s had some problems along the way, but we manage, and I know you will too! The wonderful thing about our faith is that it is there to carry us when we need it the most. Put everything in God’s hands Danielle, and let him comfort you. I’ll be praying for you and your precious one.
Danni Reichel
Sending you all my spare strength and prayers. What a heartbreaking news for you and your family, friends and community. Be gentle with yourself.
Diana
You and you family are in my prayers. May the Angels guide you through this event. It is hard to find words of comfort at a time like this. May peace be with you.
Fatima
In gods will everything will be fine. Keep faith in whatever happens it happens for the best, god don’t give us more than we can’t bare. Inshallah all goes well. Will keep you and your family in my prayers in this trying time.
Jenna
Sending prayers and love… You have changed my life with your gifts for providing sustenance and joy to others. Hugs and blessings coming your way!
Jen
I can’t even imagine what you must be experiencing. But hopefully this will help a bit. Most people have never heard of this disease but I had the great pleasure of going to jr. high and high school with a boy that had type 2 OI. His name is Sean Stephenson. His parents were told that he would most likely live only a couple of hours and now he is an amazing person, that is in his thirty’s, married, a motivational speaker, author, therapist, and more. I don’t know if this is helpful to you at all. You and your family are in my prayers. You might want to check out his website..www.seanstephenson.com
Lena
Danielle, I am so sorry to hear these news about your daughter. My thoughts are with you and your family and even though Aila is not lucky in many ways, she is lucky to have you guys.
Aimee Strickland
My prayers are with you! I am mom to Troy (my trooper/soldier/warrior), who was diagnosed with lethal OI at 32 weeks gestation! We were told he most likely would not survive birth or his first year! Through the power of prayer and today’s treatment and research, Troy is fixing to be 8 yrs old! Is it a journey…. Yes…. He’s had over 100 fractures and 12 surgeries but he has a smile on is face everyday and has proven many doctors wrong! I pray for you on this journey! The OI family is an amazing family who will be there always!
Kadie
Blessings to you and your family <3 My God Guide you through this hard time.
Janeen
with my deepest and most sincere condolences to you Danielle
Celia
Good bless you. I will be praying for you.
Christine Redshaw
I know that there are thousands of replies on your Facebook post, but please make sure you read through the top comments as it seems there are SO many parents that have children with type II and III as well as some support groups… those posts really helped open my eyes and give me hope for you guys! God bless you all!!!
Coleen
Danielle,
I’m so sorry. My prayers are with you and yours.
Randi Watkins
Mourning and praying with you. No other words can I say right now. My heart breaks for Aila, you, your husband and Asher.
Fran
My heart is breaking for your family and what you’re going through. I am consoled knowing that the Lord is comforting you and you are trusting in Him during this difficult time. You and your family are in my prayers.
Evangeline Sperti
As I read your blog I am so moved. With tears streaming down my face, I am praying for you and will continue to do so. I am a mom of 2 and I cannot even begin to imagine what you are going through. My heart is with you and I am going to believe God for a miracle.
Blessings, Evangeline Sperti
Cheryl Lane
I am so sorry about your baby. My first son was born with osteogenesis imperfecta. We lost our first son shortly after birth. At that time ultrasound was very new. DNA testing was very new. I didn’t even have an ultrasound, but in my heart I knew something was wrong. You are in my prayers and thoughts because I know how you feel.
Didi
So sorry to hear this news. I admire you for not ending your baby’s life too soon, and waiting to see what may happen. Your family has my prayers.
Vikki O'Hara
Our prayers a with you! You may find the book “Holding Onto Hope” by Christian author Nancy Guthrie a comfort. She and her family walked a very, very similar journey.
Meghann
The way you have chosen to enjoy the life of Aila is so inspirational! Right now she is with you and alive. She is feeding, feeling, and safe. God bless you and your family. I am praying for you! Love you and thank you for sharing!
Kimberly
So sorry. So, so, sorry. Hold on and hold each other. God’s love & God’s Speed.
teresa
Prayers are forthcoming and will continue throughout your journey. My heart breaks for you.
Debi B
May the God of all comfort be especially near to you and your family – now and in the days and nights ahead. For He is surely able to comfort you and hold you close.
VIcky Martin
Hi Danielle, I know what an ultrasound like this is like, as we had a very similar experience last year when pregnant with our son, who is now 9 months old and living with type III Osteogenesis Imperfecta (OI). Did you have an amnio done or was this diagnosis through ultrasound only? I ask because some doctors were sure my son had type II. Ultrasound after ultrasound, he had broken/beaded ribs, every limb broken or showing evidence of breaks, and a broken clavicle. They were wrong and I pray they are wrong in your case as well. There are support groups on Facebook that can help you through this time. PLEASE email me at [email protected]. I will give you the info for the groups and offer you as much support as possible.
You can and will get through this. Aila is a beautiful snowflake like my son, Isaiah…unique, fragile and a miracle.
Truly,
Vicky Martin
oibelieveinisaiah.blogspot.com
Tammy Isaachsen
I am so sorry to learn of the diagnosis of your baby girl. My son was also born with skeletal dysplasia, or form of dwarfism. He has achondroplasia, which happens to be the most common type. Being immersed in this community (dwarfism/little people) for 2 1/2 years, I have met many women who were given a very bleak diagnosis during their pregnancy (lethal form of dwarfism), but have gone on to give birth to a baby with a much less severe form (such as achondroplasia). I don’t tell you this to get your hopes up (well… there’s always hope, isn’t there?). I’m not sure.. perhaps you’ve had genetic testing and know 100% (versus just a ‘visual’ diagnosis of the ultrasound). Either way.. I send you big, big hugs. Thinking of you and your family. <3
Jennifer Eggers
May God bless you with the peace that passes all understanding at this difficult time. He does not promise us an easy life but he does promise us strength for our trials.
marion
God bless you and your little one as you face this journey together. I will be praying for you all.
sherry
Prayers sent up!
Kerry Lamarche
praying for you and your family.
RBel
Prayers to you and your family.
Penny
So so sorry:-(. It’s just heartbreaking! Sending prayers!!!
Pamela
My heart is very sad with you on this journey. I will pray for you, Aila, and the family and know that the Lord will hold you close, give you wisdom and peace, and will send angels with skin on them to love and comfort you.
Eric Ullman
My heart breaks for you and your lovely family. May you find strength and peace in the love that you share for each other. <3
Kristi Beguin
Sending you grounding love and peace from New Mexico. May you be filled with strength and peace and knowing.
Susan Lineberger
I found out when I was about 32 weeks pregnant with my first daughter that she had a serious heart defect and would either die in utero or shortly after birth. We were blessed to deliver her at almost 37 weeks and she survived for 2 days. I got to hold her in my arms as she took her last breath. I highly recommend taking lots of photos. I put together a scrapbook with the story of her birth and included pictures of me pregnant, her delivery, and memories of her short life. I also recommend a book called “When Hello Means Goodbye” that I got from a pregnancy/infant loss support group. This is the toughest loss you will ever endure! My heart is breaking for you. You and your family are in my thoughts and prayers. (One other thing we did was send out announcements that read “We are sad to announce the short life of our daughter…” It gave the details of her birth such as date, weight, height, etc but also said “she went in and instant on October 13, 2001, taking with her a lifetime of hopes and dreams we had for her. We will hold her in our hearts forever.” It helped let all our close friends know what we were going through.)
Keri
I’m so sorry you’re going through this heartache 🙁
My 6 yr old was diagnosed with mild OI at 2 yrs old. We’ve been a part of OI Parents on Facebook since it started and it’s a wonderful place for you to be right now for advice and support! A lot of Dr’s will often misdiagnose the severity of OI in utero, I pray this is the case with your precious baby girl 🙂 There is also an OI pregnancy group on Facebook as well if you’d like to join. Also, many of the Shriners hospitals that are orthopaedic hospitals have an OI clinic. Shriners Honolulu is an orthopaedic hospital and I believe that there’s a few Dr’s there with OI experience. The Shriners will fly you to Honolulu for free care and also pay for lodging and meals. They are fabulous!!! Just some info about possible care for the future if you’re open to it!
kcollazo
Our angel Alle Shea passed away at 5 week from OI (type II as well). It is heartbreaking, and having gone through this experience myself it not hing anyone ever should have to go through. My thoughts and prayers are with you and your beautifully made daughter.
Grace
So very sorry for this heartbreaking news. I will be with you in prayer. Remember He knows what you are going through, He hears you when you need Him and will give you peace and strength to get through this.
Andrei Jablokow
Prayers for you and your baby!
Deb Dahl
Someone has already stated it but I also want you to find OI Parents on FB. My daughter also has OI. This group has so many members who also were given the very same dreadful possible outcome that you have been given yet their children are doing wonderfully! certainly they have challenges but they are bright vibrant kids who have proven so many doctors wrong! It’s not always the case but you still have so much reason to hang on to the hope that will get you through this last leg of your pregnancy. Come on over! Many will share their stories with you! In the meantime I’m sending prayers!
Janelle Masters
Hi, Danielle. I am so sorry to hear/read about your Aila and will be praying for you and your family. I cannot imagine what you are going through, although I can relate some. I have a daughter that was born 4.5 months ago. My water had broken 9 weeks early and when they did an ultrasound in the hospital it was discovered that she had a complete femur fracture and OI was suspected. Since her birth she has had 9 fractures total and has been diagnosed with Type III/IV OI. Her name is Avery Grace…Grace because we believe that God will reveal His grace to us through her.
Aila is the perfect name for her- her bones may not be strong but SHE will be made strong, whether here on earth or in heaven with her Creator, and she will bring light into your life in ways you would not expect. OI or not, she is perfectly made. I like to say, “Osteogenesis Imperfecta or not, she is perfecta to me.”
May God wrap his loving arms around you during this time and bring the peace and comfort that only He can bring.
Nancy
My prayers to you and Aila. A beautiful name too!
Kathy
So sorry to hear this! I will be praying for your entire family through this very difficult time!
Stephanie H
My heart goes out to you. Please, please consider the possibility that you have already been given the miracle you are asking for – the medical ethnology to see these problems, and to end the baby’s suffering before she can feel pain.
B Scofield
Please join us over at OI Parents on Facebook. My toddler has a mild form and only really learned of his disorder a year ago. There is hope and we are here for you. This group will cry with you, laugh with you, offer their advice, and love you.
Christina Gaskins Roberts
I received similar devastating news at my first sonogram with my son. I was never and am still not able to express my feelings as clearly and eloquently as you have. You will be in my heart for the next days, weeks and months. I wish I had more comforting words to offer you.
grysmom
We have never met, but my son has OI. He was diagnosed as type II at birth and we took him as foster parents as a hospice placement as he was not expected to live. He is 14 and starts high school next year. Please know that in utero, unless you have amnio, the doctors can NOT tell what kind of OI your child has. There are VERY few true OI specialists around the country, most doctors have only read about it or seen it one time during residency. Some are lucky enough to have treated one or two patients. I am the Illinois support person for the Osteogenesis Imperfecta Foundation. Please feel free to contact me at grysmom @ yahoo dot com. Don’t misunderstand me, you child may be one of the very rare ones that DOES have OI type II, but I would bet that your little girl is one of the many misdiagnosed babies that actually has OI type III or IV or one of the other 12 types of OI. I would be willing to bet the doctor that diagnosed your baby thinks that there are only 4 types of OI. Please don’t give up hope. There is a very large group of parents on a closed facebook group (you have to have a child with OI and be approved to join. Pregnant with the diagnosis will get you in) There are probably 50 of us there that were given the same diagnosis and prognosis as you. Please have hope, you were not necessarily given a death sentence. Prayers with you, I am here if you want or need more information or just someone to listen. Jeannie
loa
I’m so sorry about Aila. I love her name! Its such a mystery. I lost a baby too at only 9 weeks and it was very dark and impossible. I can’t imagine being so far along as you are and having to face this.may God be merciful.
Samantha Baker
I just wanted to share with you, I have an almost 6 month old son with type III (originally they thought type II) OI and I would be more than willing to give you my insight on the condition and the possibilities of outcome. Many times it is automatically thought type II with severe cases and it turns out to be type III. My son was born with 7 rib fractures and more arm and leg fractures than we could count, but he is an amazing and healthy boy. If you would like to talk I would be more than willing to share our journey with you. You can also see my son at OI Support Baby Gavin on Facebook (www.facebook.com/oisupportgavin)
Cheryl Lankford
I first want to say how sorry I an you will have to endure this and I am in tears because I truly understand. I was prego with twin and one was ill they told me I should end the one baby and maybe save the other I chose against now I truly hope you get your miracle but if you do only get a few hours please cherish them I know I did god gave me nearly 72 hours just remember pictures last forever so take alot
Kate
Sending LOVE to you, your husband, Asher and most of all, precious Aila. I am praying for your miracle.
Anita
My heart is breaking with yours. I wish there was something that could be said or done to take away your pain. I admire your strength, your faith, and the grace with which you and your husband are facing this devastating news. You are remarkable people, and Asher is very lucky to be part of such a strong family. I will stand with you and believe for a miracle. If you are in God’s hands, then you are in the best possible place no matter what happens. Peace be with you all.
Paula
Thoughts, prayers, & tears go out to you & your family. I applaud your faith and strength, and know, too that God is with your Aila now & always.
Teryl Figgins
Osteogenesis Imperfecta brings challenges yet blessings. My daughter is type 2/3. There are several wonderful support groups for this genetic issue. Please reach out and I can connect you with families of type 2 kids. Each snowflake (what kids with OI are called) is so unique. May God bring you a special snowflake who thrives! And may he being people your way who have walked this path before you!
Debbie Legters
Praying for you and your family at this very difficult time ! Please know that your faithful followers will be here praying for you daily and whenever you feel ready to return we will still be here. Remember , God will not close one door without opening another ! God bless !
Pablo Salinas
Thank you for sharing in light of these dark times… Sending much prayer and love to you and your family. Just know you are surrounded by our prayers and compassion.
Tahnee
I am so sorry to hear this. Keeping you and your family in my prayers!!
Alexandra Pratt
I know I am just a random blog follower. I have followed you for a while now, and love your cooking. I wanted to encourage you, my close friends have a 3 year old with Type III OI which is even more rare than type II. They were also told to terminate the pregnancy, and not only did their little girl live, but she is now 3 years old, and an amazing little girl. My friend is also a representative for an Ostegenesis Imperfecta mothers group. I would love to give you her contact info, she knows all the best surgeons and is a great resource as a mother of a little girl with the rarest of OI forms! Thank God for parents like you and your husband. If you would like more info please email me. [email protected].
God Bless
Melissa Carr
I am so sorry Danielle that you all are going through this tribulation. You are in my thoughts and prayers to still be able to go on day-to-day when it all seems like you cannot, and the comfort will envelope you all in a warm hug to soothe your souls for whatever path God has in store for you!
Linda Brooks
Praying for you and your family. Talk to her and let her know your voice. We will keep you in our prayers!
Addy
Hello, I know the heartbreak you are feeling. I am an osteogenesis imperfecta mom. Issues were identified at my 20 week sonogram as well. Also diagnosed with a likely lethal type. What I can tell you is this. A life to be born and taken is only the choice of God. O.I is a difficult disease and nearly impossible to diagnose correctly during pregnancy. My son is 8 months and doing well for the condition. Hang in there. A good group is OI parents. So many on there have experienced exactly what you are going thru. We’ve discovered the best dweoctors and know our stuff! I would be happy to support you in any way. Oi Moms are known as mamma lions and we roar for each other!
Mackey
I have a thousand prayers for you and the family. Please know we are all trying to comfort and help you in this journey! Stand strong in Friends and family….she will forever be an amazing love!
Karen Marsh
I will certainly be covering you in prayer..((hugs)))
Everyday is a precious gift for each of us, so treasure every moment with your beautiful daughter. Maybe write a journal with photos (& ultrasounds) and record your memories for the future.
May the Lord’s peace and comfort be with you on this journey…the road of life can get really tough…God bless you and your little family. xx
co
you and your family are in my heart and on my mind. may you find comfort, strength, and support from those who know and care for you.
lisa bivona
I am so so sorry that you are going through this. May you have strength to bare this. Bless all of you. And what is is love.
Trecia
I am so sorry! My prayers are with you and your family during this time of grief. ((Hugs))
Trecia
Jennifer MommyLifeAfterPh.D.
Praying for your sweet family–I’m so sorry.
nclark499
Holding your family and little Aila in my prayers.
shugal
soooo sorry to hear this heartbreaking news!!! please know you and your beautiful family are in my thoughts and prayers
Tess
I pray that the God of all grace, mercy, and peace flood your mind and hearts. He will walk with you. He is close to the broken hearted.
Cynthia Albert
I am heartbroken for you, Danielle. I have an only child who is 34 years today, yet I almost lost my life due to pre-eclampsia with him (which is what inspired me to become a nurse; they saved my life). I have celiac and the MTHFR gene mutation, and I was able to have only one child, as stated. If Asher is your only child, you are greatly blessed as he is a beautiful gift whom we enjoy seeing, too. I never had a daughter, so I know your pain; I miscarried at 8 weeks and never had another child. I am now 56. What I do have now is not only a wonderful son; I have three beautiful grandchildren, two being absolutely adorable granddaughters. It is very, very hard to see the silver lining in grief, yet what God does with bitter disappointment is often a joy we never knew possible…..You and your family are in my prayers for relief and comfort. You are dearly loved.
laura richardson
I have only been visiting your page for a short time, but love your spirit and the wonderful ideas and creativity you show, and I am so so sorry for what you are enduring. You are a very strong woman, or else you wouldn’t be where you are and doing what you are doing. I know that that little soul will know who her parents are very fully no matter what happens, so please know that those who view your matierials do love you, if even from afar, and are lifting your family up in its ENTIRETY. :'(
mrsL
I am so sorry Danielle. Where there is life, there is hope. Little Aila is blessed to have such a loving and compassionate mommy. Enjoy each other as much as you can for as long as you can. As heartbreaking as this time may be, it can also be full of love an blessings. Praying for all of you.
JennMomof5
I am so sorry. So difficult to understand. So thankful you are relying on God to help you through this. Praying and believing with you for a miracle. He is able! Blessings!
Cindy S
But you will be able to see her….some day.
Jessica H
Prayers for Baby Ala and your family!
Jennifer Kell-Hance
Having had a son born at 24 weeks who lived only a short time, I feel the very depth of your pain. I wish I had words that would take away the deep,deep sadness but there are none. God is good and merciful and his plan is ALWAYS perfect. Those were the truths that brought me through the immeasurable grief and despair. You and your family are in my prayers!
Rebecca {Foodie with Family}
May the peace that can ONLY come from God find you in your worst moments. I pray that you are able to have time with Aila and that there will be miracles beyond your wildest imagination. All my love and prayers are with you.
robyn
I’m so sorry to hear of your sadness. I just wanted to pass on the information about a local celebrity here in Adelaide, South Australia. I’m not sure if it’s the same version of the disorder but Quentin has brittle bone disorder and has made an amazing life for himself. I’m praying for you all during this sad time. Robyn xx
Quentin Kenihan is Australia’s most unique celebrity. For many years he
featured on national current affairs programs as he struggled to
overcome his disability. Quentin has captured the nation’s heart with
his wit, humour and never-say-die attitude. Now as an adult he is best
known for his hit TV series Quentin Crashes. He is a young Australian
film-maker who suffers from a rare bone disorder (Osteogenesis
imperfecta – bone brittle disease) and has spent most of his 31 years in
a wheelchair from which he observes life through the lens of TV
cameras.
Nikki Dinki
I am so very sorry to be reading this, and unfortunately it seems way too familiar. I lost my little girl Willa the day she was due a couple months ago. I am a food blogger and TV chef so after appearing on national TV pregnant and of course just being a giant pregnant lady I didn’t have the luxury of keeping my struggle private. It was, and it is, the most terrible thing. But I do love talking about her, and I wrote about her and shared all I could on my blog…https://www.nikkidinkicooking.com/home/willas-lemonade-cheesecakes.html It’s something, but never enough. I’m not going to sit here and say I’m all better and don’t you worry, but I have learned some things on this journey, and there may be some very hard choices in your future, so if you ever want to talk, or email, I’d be more than happy to share more. Again, I’m just so so sorry.
Nikki Dinki
Shellana
My heart breaks for you and your family. Know that you are in my prayers.
Lisa Larsen
Please know that you and your family will be in thoughts and prayers as you go through this difficult time. I pray that God gives you strength and peace in the coming months. Also know, that I will be praying for a miracle. Nothing is too big for God to shoulder. God Bless
Michele Brosch
I am praying with you.
bama14
I’m so sorry, please get an amniocentisis, I was told my son had trisomy 18 and to terminate my pregnancy, I went for genetic testing and it was a false positive, Gods plan is exactly that, I wish you peace and comfort
Katrina
I couldn’t even begun to imagine the pain but I am praying for you.
Laura
I am so very sorry. I will be praying for you and your family, may
God give you strength!!!!
Susan Stafford Dake
My prayers and love to you and your family!! I am heartbroken with you!
Angela
prayers for you all!
Sarah
My heart breaks for you. To have this challenge ahead will be the hardest thing I can imagine. I pray God will be with you constantly during this difficult time xx
Jenna Carodiskey-Wiebe
I am so very sorry. Losing a child without getting to know them is terrible. You have my prayers at this time.
SparkleGrammy
I am so, so, sorry this has happened. May you and your precious little girl have peace.
Mummaducka
These are very hard times for you and your family. I have always believed that the longer a child’s soul is with you the harder it is to say goodbye and let go. I pray that God will not let her suffer too much pain. There is a plan for you and this is all part of it. xx
Kts
If she has a pulse, she has a purpose. May God hold you and take care of you during this incredibly difficult time.
Lisa Lisa
Oooooooh how incredibly heartbreaking. I am aware of the condition and cannot imagine the spin cycle of emotions you would be going through. It’s beautiful that you have chosen a name for your girl. It sounds like your instincts have appropriately named her soul. Love and light to you and your family. Some babies are too special for heaven to let go for long xx
wendykelly
Will be thinking about you and your family and sending love, prayers, and light…
blondie721
I can’t begin to imagine your pain… I am so sorry you have to go through this. I believe her spirit will always be with you. You have my prayers
Eileen
Danielle and family, I only know you through your Facebook, blog and wonderful book, Against all Grain. You have picked the perfect name for your baby girl! She will bring you the strength that you need to walk this journey with her. Beyond the trials and struggles along the way, there is the Light. She will always be your Aila. Prayers for each of you. You are part of a greater plan than any of us can understand. Please keep God in your center.
Donna Gettings Apperson
My heart and soul go out to you and yours.
Lanair Owens
Dear God I know that you are still performing miracles every day. I pray that you give the Walkers their miracle today and heal this precious child. I ask this in your wonderful precious name. AMEN.
Terri
I’m so sorry, Danielle, but I’m glad you are trusting God for the outcome. I’ll be praying for you and precious Aila. Love,
Karla
I pray for you and your family. Your book has helped me through a lot with my health and is my favorite all time paleo friendly book thus far…
Bekki
Your family is blessed by the glory of God! He has chosen Aila to be yours…to be loved by you! I lost 5 babies, before giving birth to my daughter at 31 weeks gestation. I took comfort in knowing that my other children weren’t meant to walk the earth…and I am looking forward to the day I meet them in heaven! Alia has a very special purpose…what an amazing little soul! My prayers are with you all!
Beth
Prayers for you! Only God can comfort you and He knows what you need right kow.
Cecilia Madero
I have never read any of your blog posts before and a friend of mine shared your story on her Facebook wall. I read it and felt the need to leave you a comment, even though you might not read it. I don’t have any kids and I am a newly wed. One of our biggest dreams is to become parents. As we dream of it, we never know what challenges we might have to face. I cannot imagine the pain you and your husband are going through right now but let me tell you something. You have to be one of the strangest people out there for deciding to share your story and provide information for other families. You are also very very strong for deciding to still be her parents for as long as possible, giving her all the love she needs and maybe hopes. Even though she’s still a tiny little baby, I’m sure she feels your love and so does God. He’ll make you stronger through hard moments and will reward you for not being selfish. He will reward you for your love, for your strength and for you not giving up. All I have to say to you when you’re going through so much is keep strong. Keep your love full of love and you’ll be able to see light.
You and your family will be in my prayers. Please stay strong.
Joseph's Mommy
I’m so sorry, Danielle. Absolutely heartbreaking. Our family will be praying for yours as you work through this. Please know that our hearts are with you. God bless you all, and sending lots of love and hugs, peace and healing.
razmataz25
I have a daughter with Osteogenisis Imperfecta. We have a wonderful Facebook support group (OI Parents). Please contact us. Anyone would be happy to talk (and cry) with you. I also had a miscarriage a year ago that was a partial molar pregnancy. I would be happy to chat with you. I will be praying for you.
Jody Whittimore Cheek
I’m Jody, mom to a daughter who also has Osteogenesis Imperfecta (OI), who is almost 14 now. We knew what type she had because my husband also has type III. Doctors can not know what type your sweet daughter has until she is born. There is hope! Only God knows her prognosis now but trust me when I say that there are so many stories of babies being misdiagnosed type-wise prior to birth. Connect with families on FB — OI Parents, OI Parenting — two of the groups. I am a board member of the National Osteogenesis Imperfecta Foundation (www.oif.org) and there is more information to be found. Please feel free to email me privately if you’d like to ask any questions — [email protected] My prayers are with you and your family for peace and strength. OI babies are the most special kind. 🙂
Cecilia Madero
I meant STRONGEST not strangest. I apologizefor the typo 🙁
Lynda Rose
Its never easy being a parent, the learning about yourself and your children is always immense and greater than you ever expect, but its real as you well know at this time, more than the rest of us it seems. I don’t know you at all either, but I can only offer you love and the knowledge that you will find the right people around you that will comfort and support you and your little family. Take deep care of yourself, breathe deeply and fill you body with love. Your little one will feel all of these emotions and know that she is loved……
Jen Stevens
Oh, Mama… my heart is aching and broken for you. Such sadness, such sorrow. I have walked this road myself: our little MaryGrace was born still 10 years ago, and the depth of sadness is something unlike any loss in all my life. I mourn with you.
Call out to God, keep calling to Him. He will meet you where you’re at, and help you with each cry, with each breath. You’re going to get through this, Mama, because you are going to lean on Him. And He will not leave you or forsake you; His mercy is new every morning, His love never fails.
I am holding you and your sweet baby in my heart and prayers.
With love,
A mama who knows and cares.
Laura
I’m so sorry. God’s blessings, comfort and peace on your family.
Ashley Woods
Praying Jesus will do a miracle for your family. So sorry for you all!
Brianna
You dont know me but I found your blog through a low carb facebook group I belong to. I cant even comprehend your pain right now but I thought I would share this little boy with you. He is my neighbor and is proof that miracles do happen. https://www.facebook.com/pages/Nathan-Ryan-Glad-Foundation/465583566785993?id=465583566785993&sk=info
Mary Ann
Our prayers are with you.
Cheryl Hatcher Dutro
Oh, Danielle! My heart is breaking for you as I sit here in tears reading this. There really are no words I can say that will make any difference, but please, please know that you are surrounded by SO many people who care about you and your family as you have been so gracious to share your life with us through your blog and your wonderful recipes…I, for one, consider you a friend, and my friend you just went to the top of my prayer list. May God bless you and your family, may He wrap you in His arms and comfort you as only He can as you walk this road together.
Marie Rooney Biddix
Much love to you and we are praying for you and your family! I am so thankful Gods plan is perfect!
Annie
No words are sufficient. Praying for a miracle. xoxo
Kim Mattox
My heart is breaking for me. I will pray that a miracle happens and the drs are wrong, or in lieu of that, that God’s will is done & He heals your heart. {{{Hugs}}}
Starr Lynn Lockhart
In 1994 I was pregnant with a baby who was diagnosed when I was 20 weeks pregnant with trisomy 13. I was told the same thing. It is rare that trisomy 13 babies are born alive and most die shortly after delivery. I never considered abortion to be an option. I was stressed about how I was going to get through the next 20 weeks. Then I felt the Lord spoke to me with one word, acceptance. I accepted what God had decided to do in my life and went back to my homeschooling, back to raising my 3 children, back to doing what I needed to do. My life and my baby’s life was in the Lord’s hands. I felt like the Lord carried me through the pregnancy and delivery of my baby, Anna. I wasn’t happy but I had great joy. Happiness is when everything is going your way but joy comes from God alone. Anna was born alive and I held her as she peacefully passed away. I had joy that I was able to hold her and see with my own eyes that she had problems. If I had had an abortion, I would have always wondered if the doctor’s made a mistake or not. The high risk pregnancy doctor told me that I was high risk to have more babies just like Anna. I was told to stop having babies. We went on to have 4 more healthy babies. At the same time I was pregnant with Anna, my cousin was also pregnant . Her doctor told her that her baby had a fold in the brain. She was told to get an abortion. My cousin decided to keep her baby because I had kept mine. Later on she went on to deliver a healthy baby girl. A year ago that baby was married and is now pregnant with a baby girl. Enjoy your baby while you have her. Take lots of pictures of you pregnant. Take lots of pictures at the hospital and get locks of hair if you can. Starr Lockhart
Debbie
I am so sorry to hear this sad new but I know exactly what you are going through. This same diagnosis was given to my son and his wife at 20 weeks. They were advised to end the pregnancy but they did not and felt they would be her parents for as long as God intended. Such a hard time in our lives…I think I cried everyday. Watching the baby grow in utero and given no hope for her survival. The dr. Said she had a 99.9% chance of not surviving birth. It turned she has a different condition and she is now 7 years old. She has many disabilities, too many to go into here, but she is a miracle just the same. My point is just trust that this is in God’s hands and never give up. I will keep your family in my prayers.
DeneenCook
I am praying for a miracle. – love from your sister in Him – Deneen
maribel f
You are in my prayers
Kristen
Bless you for allowing her a chance even if it seems a small one. We were due at about the same time, but my daughter passed away unexpectedly and for no known reason several weeks ago. I will be praying for strength for you. *HUGS*
Linda @ Fit Fed and Happy |
I am so disheartened to hear the news, Danielle! You are such a fantastic mother and I support your decision to keep Aila. Medical doctors aren’t always right; a veteran was told he could never walk again, and now, he is RUNNING!
Miracles happen, and I pray for you and yor family. It is crucial at a time like this to count your blessings; the blessing that you know this before the delivery, the blessing you have to have you and your husband to support eachother, and the blessing that you are able to conceive Aila. She may or may not live in body for so long, but her soul lives.
Words cannot say what I want to say. I will pray for you.
Slewski
Tears and prayers for you and your family! I’m so sorry. May the good Lord strengthen you.
Kaitlinn
I am so sorry to hear this. I was in tears reading this. You are in my thoughts & prayers. <3
becreative
God is already using her as a light ♡ I shed tears, reading this, for you and your family. As you know, God is faithful, even when it hurts to breathe. I am praying for you for sure. Thank you for telling your story.
kelli milani
I am praying for your family. For strength for you and for her. I was told that my baby girl wouldn’t survive and we were torn up about it and waited day by day just loving her as much as we could. We were under different circumstances but we were told she had 3% chance of survival and if she did survive she would have something wrong with her. Prayer with faith from people I didn’t even know worked in our favor and she is almost 9 months old. She’s tiny but she is very healthy. I’m hoping my prayers and faith will work in favor of your family. Just keep in mind that God created her not anydoctors and that he has the final say.
Sharon in Australia
You are in my prayers, may our Lord give you all that you need, stay strong in Him.
Heather
My heart goes out to you and your family. I know that burden and heavy heart that you feel. I was faced with a similar situation just a few months ago. I’m pregnant with twin boys and we had received horrible news that we may have to do a reduction to terminate one babies due to some findings and the specialists were pushing termination. I will tell you, I was never so confused and scared but I felt the most peace when I turned everything over to God. I realized that this may not be my plan but it is His perfect plan for my family. i decided that I would follow His lead and if my babies were not meant for this world that He would show me that. After long agonizing weeks and test after test and prayer after prayer, I’m 29 weeks with two what appear to be healthy boys. Things seem as though they have worked out so far based on the many tests, but we won’t know until they both arrive. Typing this message to you takes me back to those horrifying moments. The things that made me feel better was prayer and praying with family and friends and talking with people who have been through something similar. I will be praying for that peace that I know to fill your hearts as this this is out of your hands. God bless you.
Michelle C
Praying with you & your family.
Kamy Auker
I admire your strength in this. Keep living through the spirit day by day..God will give you the strength you need to make it through this hard time. Just keep putting one foot in front of the other. I enjoy your recipies and post. You and your family are in my prayers.
Jen Waters
My son has OI. While not the type you may be facing, I understand your fear. My prayers are with each of you during this time for a miracle and for peace. OI kids really do have unbreakable spirits.
Jennifer
I’m so sorry, Danielle. I have prayed for you and your family.
April
I am so very, very sorry. We lost our little girl in utero at 26 weeks this December. She was stillborn. It is a heartbreak unlike any other. I’ll be praying for you.
Mary Brewer Blanks
I had typed a really long comment here, but my page refreshed and I lost it… So, I’m sending you a shorter, simpler post. Long story short, my name is Mary (from North Carolina) and two years ago I went through a very similar diagnosis with my son, William. Doctors told us at his 20 week ultrasound that he had a lethal form of a skeletal dysplasia, also Osteogensis Imperfecta (OI). The most important thing I did in those first few weeks was to reach out to some other Moms that had children with OI. There is an absolutely amazing Facebook group out there that would love to support you in this journey (https://www.facebook.com/groups/OIParents/). I spoke to several of those moms and even met with a few of them in person prior to Will’s birth so I would be ready to advocate for him in the hospital (you’ll need to know special things about blood pressure cuffs, diapering, the type of delivery to have, PAM infusions, etc). Within this group, you will find mothers that indeed lost their sweet babies to OI, but you will also find many other Moms that also had a lethal diagnosis for their children but they have instead seen those babies grow up and thrive. Doctors continued to tell us throughout my pregnancy that Will wouldn’t live. They showed us “fractures” during our nearly every other week ultrasound…they showed me how his chest was too small to support breathing. BUT, Will came out on May 2, 2012 crying and he hasn’t looked back since. Our doctors had the diagnosis wrong and Will actually had an even rare syndrome called Jeune Syndrome. More than 80% of the time this condition is fatal, but again Will defied the odds. All of that is to say to you… Have faith. Doctors can be wrong. Ultrasounds are just tests. They are imperfect. One small twist of the knob can change the way everything appears. Keep your faith. Pray, pray, pray and know that no matter what God holds in store for you that He will prepare you for this journey and hold your hand. If you want to chat, please reach out to me. I would be happy to share more of our experience. You can find my contact info and more about our pregnancy with Will on my blog: https://www.thetallchickblog.com/p/all-about-will-and-our-oi-journey.html
Holmantribe7
My heart is breaking for you and your family. I cannot even begin to fathom all that you are going through but I am definitely praying for you. God loves you and I pray He just wraps His arms around you extra tight and carries you through this valley.
Sara
I’m an ultrasound tech and my heart sinks when I see abnormalities. I too have suffered from a molar pregnancy as well. My heart goes out to you and your family.
Douglas Abbott
Danielle, I was so sad as I read of your terrible situation. You don’t know me, but a colleague of mine shared your article and asked for prayer. I will certainly pray for you, your husband and little Aila. You are right, that if the Lord sees fit to take her, she will soon be out of pain and in the arms of the Lord Jesus. You and your husband have the greater burden to bear, and I’m sorry for what you are going through. My prayer is that God’s comfort and peace will swaddle your family during this time.
Abolish Holders OftheLight
please try RICK SIMPSON OIL, immediately start taking it twice daily i have read that 13,000 miligrams of it cures any disease. maybe your body will transfer itsa healing properties to your child and at the very elast the next time you have a child it maight turn out just fine. at the very least please do yourself the biggest afvor you can in your life and read about and research
RICK SIMPSON OIL.
Chip
As a new parent of 3 weeks, I can’t imagine getting news of that magnitude. My wife and I will be praying for all of you.
Dee
Thank you for sharing your heart and story with us. Please know you are in our prayers. If you have not already heard Angie Smith’s story and read her book, I would highly recommend it. https://www.amazon.com/Will-Carry-You-Sacred-Dance/dp/080546428X/ref=sr_1_1?ie=UTF8&qid=1401498611&sr=8-1&keywords=i+will+carry+you She also shares her daughter Audrey’s story at angiesmithonline.com it might be a great comfort and encouragement to you. Blessing, sweet Mama.
Karen Peters
I am praying for you to have a miracle and have a healthy girl.
jess
I just read ur post about ur daughter. I lost my daughter two and a half yeats ago shorlty after her birth. Her life as short as it was, was the best thing that ever happened to my husband and myself. Knowing our daughter is with the Lord. OUR Lord and Savior is such a comfort. I still struggle daily (no exaggeration) with having her not here woth me. But my son who is nearing one year of age is a constant reminder that our gracious Father has a plan for us all. I know I do not know you. But I will be praying for you often in the days and months to come. Never forget that God has a plan for you and your daughter!!! And you WILL see her again in perfect form. That’s what I tell myself about our daughter.
Sincerely with such heartache,
Jessica
rachelmcrawford
My heart breaks for you. I will hope with you for a miracle. My twin daughters died in 2008 just a few weeks after they were born. I have something to give you, some tea that my sister and I created after the deaths of my daughters to help hurting hearts. I know you have certain dietary limitations so if you’d be so kind as to go to our website http://www.teamotionstea.com and let me know which tea you’d prefer I’ll send it right to you. Where can I send it? Private message me at [email protected] if you have questions or to provide a mailing address. I hope it comforts you and your family as you walk through this difficult season. I also want you to know that you are not alone. There are many of us, women who have faced the unthinkable, and we, particularly me, want to support, encourage, and be strong for you while you tend to your heart at this time and beyond, even if it is from afar. I wish I could do more for you, your family, and your sweet Aila.
Dedra Miller
So beautiful to focus on Asher and mothering Alia for as long as she is with you… She will get to hear your voices and feel your love. Bless you and your family.
Ingrid
I lost a son due to a knot in the umbilical cord three weeks before his due date in 1991. My heart is with you at this time. You know your child, they know you. Speak with them while they are still in the womb. They know you and love you. My heart is with you in this time. In His Love, Ingrid
James Maloney
You are in my prayers.
Jen
I am so sorry to hear this. We are expecting in October, due in fact the DAY of our twins’ death, three years ago at 30 weeks to something similar. I am praying for you and your family. Bless you and your little girl.
Nan
Aila is loved. Sorry to hear the news. Praying for God’s hand on you, your family and especially Aila’s lives.
Danielle Geiser Obert
My heart aches for you. We too lost a twin at full term then 13 months later were blessed w our beautiful son Gavin. I know your pain. I wouldn’t say it if I truly didnt. I believe God has a plan for everything sometimes you can’t understand why. I just had a baby girl 3 months ago and my husband was just murdered on the 9th of this month. Us women are strong and beautiful creatures. It is amazing what we are handed in life. Love your children no matter if you ever get to truly meet them. God is always with you just believe in his plan. My four children and I will pray for your family
Sarah S.
There are so many of us who have walked this path of grief and loss. Our hearts and prayers are with you.
Sr. Mary Brigid
We will hold you, Aila, and your entire family in our prayers here at the Sisters of St. Rita…..and we will pray for St. Rita’s intercession. She is the Saint of Impossible Causes, and was a wife and mother before she was a nun. We pray that this cup might pass from you, but if it does not, we pray that God sends you the grace and the strength to bear up under it. We will storm Heaven!
Catherine
I am with Sister Mary B. our prayers are with your family. We are praying up here in the pacific north west.
Annie B (Kyoodled)
Unfathomable. I was never able to bear a child (though I am mom two two amazing small people through adoption), and cannot even imagine the pain you must be going through. At times when I don’t know what to do, I remember the promises of our Father, and have found great comfort in a poem titled “The Master Weaver’s Plan.” May His love surround you as we lift you in prayer for perfect healing (which doesn’t always look like we want it to) and comfort. God be with you.
Kira
I am so sorry for the pain and sadness you and your family are going through. I have no words. I just want you to know that I will pray for you and keep you in my thoughts. Hold strong to your faith it will help you more than anything at this time. May God bless you and bless sweet Aila.
Debi Joy
I’m so incredibly sorry. I don’t know what else to say except to tell you I will be praying for you, your family and for your daughter. I’m so glad you did not end your pregnancy but instead chose to follow God’s plan for your daughter’s life. May God bless you in your sorrow.
Lisha
I lost my son last year at 23 weeks. We found out he only had half a heart, and it was my body that was keeping him alive. We let our son go, and that was the best choice for our family. I want you to know that you are not alone; there is a group of women out there that understand and share your suffering. We all love you and lift you up, because we understand how very, very hard this is. Be at peace with your decision and enjoy the time you have with your daughter.
Avery
You and your family are in my thoughts and prayers. I know, no words can help at a time like this. My heart is with you.
Jen
xo
Heather Torriente
Many are praying are mourning with you. My friends daughter has OI and the struggles they face are tremendous. Alia (and Asher) are blessed to be your children forever. Praying that the peace only faith can bring will carry your family during this unimaginable challenge. Also praying that the love of those who don’t even know you personally will fill your lives.
Sherrine
I feel for you, your family, and your little angel. Know that whatever happens, you will be her mother, whether in this life or the next – the family is forever. I pray that you and your family will find peace and strength of spirit in the coming days. ((((Hugs to you)))))
Jen
Danielle, I am so sorry to hear your heartbreaking news. I recommend a book called ‘I Will Carry You the Sacred Dance of Grief and Joy’ by Angie Smith.
Stephanie
Praying you and your family, God will give you strength and has a plan for all. Love sent your way.
Amy
It’s impossible for me to understand what you and your family must be going through as I don’t have any children but, I know God. And what I know about him is he is a sovereign God. He does have the power for a miracle. And we will never know if Aila is already a miracle or not. Only He knows that. Your faith is a breath of fresh air and I hope you can hang on to it through this difficult journey. I hope with all my heart, that you get to know Aila more personally than you know her now. And that you one day get to look upon her face and see your sweet little girl. God bless you Danielle and your family….
Laurie Moll
I am so very sorry. I have no words that will bring you comfort, so I’ll pray that the God of all comfort will be near to you and comfort you in a way you could never have imagined!
Janine Donnelly
I just read your post and I want to let you know that there is hope for Aila. I know that is probably very hard to believe right now after what you have been told by your doctors. My son, Evan, who’s now 12 years old, was born with OI too. He’s a Type IV. Here’s what I can share with you. Doctors cannot determine what type of OI your daughter has with just an ultrasound. She could be a Type III which is not lethal. These OI children have such a zest of life and they are fighters to their core. Very single one of them. You could not have picked a better name for your daughter! I won’t lie – it’s not easy to watch your child break bones and suffer. BUT I can tell you that my son has been such a blessing to us. He never complains and is always a joy for everyone around him even when he’s broken. We are a small community but a supportive one. There is an OI Parent Facebook Page with parents who had been where you are right now with healthy, thriving children who were told the same things you were told. There is a bone strengthen treatment called Pamidronate – Most OI children receive this and it really works to lessen those breaks. There are medical studies you can look into, an awesome clinic in Omaha with excellent OI doctors, and my friends daughter sees a doctor in Hawaii. Check out the OI Foundation’s site too at http://WWW.OIF.ORG. You are not as alone as your family feels right now and really wanted to let you know that. Don’t let this diagnosis steal your joy. Please find me on Facebook and look at the pictures of my son. I can put in touch with the OI Parents too – they really are a huge help and they understand. I have faith that Aila is going to be an awesome fighter and with you for a long time!
evy
Janine, that’s wonderful news. I’m crying as im reading this post…and reading your comment proves me to never loose hope!
April Emanuelson
Yes! Never give up hope. Isabella Bea Hope was born to us missing a portion of her brain, a portion of her skull, and with a cleft lip. At our 20 week ultrasound they were preparing us to have a baby that didn’t nurse or perhaps breathe on her own, and that she would most likely be very special needs and probably wheel chair ridden. “Izzy” is such a normal baby! She nursed fine, is cognitively gifted, dances and runs at 20 months and is the light of our lives. She cured us of needing perfection and we thank God everyday for the gifts she has given us and her brother and sister. Hold out hope. If nothing else you are a beautiful vessel for a special sole to reach God’s loving arms sooner than later, but by hanging in there to see what the ultimate plan is, I’m sure wondrous teachings await. God bless all of you!
Deb
What a beautiful story! You are an amazing mom!
Harold
I am amazed and thankful for the electronic means of encouragement of one another. Thank God.
Shonda Hector
Yes, Danielle. She is surely a “fighter” – like her mother. I will continue to pray for you. I pray for a miracle for you. God will see you through. I’m happy to hear that you will continue through your pregnancy and allow it all to be in God’s hands. Psalms 57:2 says, “I will cry to God Most High to God who accomplishes all things for me.”
Janine Donnelly
Thank you Shonda for the prayers. We really appreciate it!
Mtbcjones
The miracles and connections that can come from Facebook astound me!
Kelly@TheNourishingHome
Beautiful story of hope and how nothing is impossible with God! I had never heard of this condition prior to Danielle’s post. I pray that because of her courage and faith that we can all be aware and praying for precious children like your sweet boy and Danielle’s precious little girl! xo
Janine Donnelly
Thank you Kelly – We always appreciate the prayers and I’m always thankful when I can offer a little hope.
Sophia
Thank you for sharing your story to encourage her and her family and many other families that could be reading this
Kelly Michelle Turner
My daughter Ivy was type II confirmed by amnio HOWEVER there was only 9
people in the world with her exact mutation and 4 lived..if they lived
so could she. I fought the doctors who said she would be born and we
would have minutes..I finally after 32 weeks switched hospitals to
Barnes knowing she would need Children’s hospital and said WHAT IF she
LIVES! and guess what she did..she lived for 9 weeks and even got to
come home with us on Christmas Eve…please dont give up on her and
trust me when I say I grieved my child over and over and it’s so unfair
when they DONT KNOW..they can’t know and I tell you she would have beat
the disease..They did a mri while I was pregnant to confirm her chest
looked ok..it did..She was born with every bone in her body broken
multiple times.. OI babies are born in extra water and the pain
tolerance is higher..they protect themselves.. I got to hold Ivy and we
played possum…she loved being read too and she laughed and smiled and
god was the most beautiful thing I ever saw.. She would have beat
it..before she left the hospital they did a mri where they discovered
her neck had a kyphosis and it was bent basically wrong and was putting
pressure on her spinal cord..anywhere else it would have just made her
paralyzed however with it pressuring the C1 that is where your diaphram
is at..it would eventually kill her unless we did surgery.. They
couldn’t get iv access on ivy-go figure..The doctor at children’s had
more love than I have ever seen and told us to go home with her and
enjoy our christmas..we had enough hard choices and to enjoy this
time..we did..She did pass 4 days later but I wouldn’t have changed one
moment of our time with her.. If you need to talk or want to read Ivy’s
story from beginning please find her story on facebook its under
prayer’s for baby ivy.. there is also several groups for oi parents..oi
pregnacy and it is a strong group and filled with real people not google
who said her disease was simply a death sentence..I got way more than
minutes or days with her..and would have had even longer if not for the
neck issue. Love your baby and don’t lose hope..name her..buy animals
and decorate and more importantly CELEBRATE her coming..I know it sounds
weird to say but she and you both deserve to do that..take care
Janine Donnelly
Hi Kelly – What an incredibly touch story! Thanks so much for sharing that and I’m so glad that you were able to have Ivy with you even though it wasn’t long enough.
Buffy Jean Hollar
My mother in law had osteogenises (my spelling sucks) she had a severe form was in a wheel chair from the age of 5 but grew up into a wonderful womad & gave birth to twins & then another single son she lived to the age of 50 when she died in a house fire. There was NOTHING that I can do that she couldn’t she drove herself everywhere she needed to go did her own cooking & cleaning etc. Not all dr’s know what their talking about they just want to give you the worst & hope for the best. This daughter of yours has as much chance as any other child will just have a harder road
Nancy
My cousin’s son was born with osteogenesis imperfecta. He is 30 years old now, a very handsome man and teaches high school Physics and coaches the girl’s golf team. So there is hope – it wasn’t easy but he is a marvel.
galem
I sincerely hope you will contact and talk to a member of “Now I Lay Me Down To Sleep”. Google if you are not familiar. They are an organization of special photographers who photograph for parents the final time with a baby that will never leave the hospital. All images are yours for free and nothing is ever shared with an outsider.
Stephanie Ready
Your family is in my prayers. I cannot imagine how you are feeling but I know that God can provide comfort for you.
Kookie
I am so very sorry to learn of your terrible news.
9 years ago, I was in your shoes. 20 week ultrasound and being delivered the terrible news. Sending you and your family love, strength and prayers xx
Allison
I am so very sorry to hear this. As a pediatric nurse, I have known several children with osteogenesis imperfecta, and all were both strong and light-filled. We have hope as an anchor for our souls… And hope does not disappoint, because God’s love has been poured into our hearts through the Holy Spirit, which has been given to us.
Romans 5:5
Christina Williams Routon
I am so sorry for your loss. I know God has you and Alia in His hands. She chose you to be her parents, and she will always love you for honoring her life.
Brenda Royer
God bless you and your family, and all the wonderful people who have commented with love and hope.
Bonnie Smith
I’m so very sorry but will keep you in my prayers!!!
Stacy
I cannot imagine your pain and feelings of loss. But I weep with you as a fellow believer. I am glad you have a hope to cling to – God can do miracles and you will spend time with Aila, perhaps only now until birth, perhaps for a short or even long time after, and certainly in the home of Abba!
Diane klopfer
My dear girl, my heart aches for you and your husband. I’m praying that Jesus will give you everything you need to get you through this unimaginably sad time. I’m praying that you can feel in your heart and soul the love and compassion of our Father. He’s holding you tight and loving you through it all. May The Lord bless you and your family.
Anita
Praying for you now and in the days ahead. I just read your blog after seeing your post shared by a friend of mine. I can’t begin to know the pain and stress you are feeling, but I pray for comfort and peace for you all. I love the name Aila and the meaning of it and pray our Lord Jesus will give you strength for each day as you anticipate her birth, trusting completely that He can do a miracle, and also that ultrasounds have been wrong. God knew her before she was conceived and formed her for His purpose. I disagree with the statement that He only gives us what we can bear – I think often He LEADS us through MORE than we can bear on our own strength to show us how much we need Him and how much He loves us because He will never leave us or forsake us.
Jordan
You and your family are such an inspiration of love. Thank you for all you do and my thoughts are with you!
Emily 'Smith' Thilges
When I was pregnant with my second son, at his 20 week ultrasound, my doctor told me that Bennett had a skeletal dysplasia and that he would likely die soon after birth. His bones were measuring increasingly short and were bending, and it appeared that his chest was bell-shaped leaving little to no room for lung tissue to develop. The specialist told my husband and I to abort the day after Christmas, that the form of skeletal dysplasia that Bennett had was incompatible with life. We were devastated, but knew that abortion was not what God would want for our baby. We put a birth plan in place to give him comfort measures after he was born and began praying for him by name. We told everyone we could tell to pray for our Bennett, “Little Blessed One”. The day he was born was a miracle, the doctors that morning did an ultrasound and told us that we should expect him to not be breathing after birth. I was so frightened, because he was so safe inside of me, I did not want him to come out and then lose this precious gift that had grown in me all that time. Bennett came out crying, went to the NICU for an hour, and then we went home as a family in 2 days. A miracle! He continues to stump his doctor’s all of the time as he struggles with growing, but he is a gift.
I will pray for your gift. Your heart is breaking, you are being drawn to God’s arms, and God has a plan for you and your daughter. I am so sorry to hear this news as it brought me back to when I was pregnant with my Bennett. Thinking and praying for you.
Rachel Wiegand Whiteley
Praying for you all! I’ve had my own heart aches. Though not the same circumstances as yours, I know the heart brokenness. May God grant you peace and strength. Praying you are able to enjoy her life as short as it may be. Praying for a miracle too. It’s so hard to pray “whatever brings you must glory, God, do that.” But I’ll be praying.
Annie Van Peter
I am praying for you and your family, knowing that the Lord, our True Comforter, will bless you and keep you. Praying His incredible love and blessings upon you and your family.
K Hicks
My prayers are with you and your family. I pray for peace love and comfort to surround Aila and each of you. May you hold one another close and let your love be a light for her. Light and love to you all.
yogamom
I’m so sorry to hear of your heartache. She will know the love of her mama regardless.
Melanie
My heart goes out to you, but I’m so glad you shared your heartaches with the world and hopefully will take advantage of the profound support opening their arms to you and your family. Blessings in everything.
Charity
Sending so much love and mourning with you. Can’t stop the tears! She is a blessed spirit to call you mama.
Millicent
My prayers are with you. . . I am so very sorry. You are a blessing and an inspiration.
Tanya
My heart and prayers are with you and your precious family. May comfort your bleeding heart, Danielle…
Love, Tanya
janelle hayman
Life seems so cruel but God will walk you through this and he Will take that little soul when it’s time. I’m so sad for you and pray for strength and comfort for you and your family
Kathleen
I am so saddened to hear this terrible news. May God grant you and your family strength at this extremely difficult and heart-wrenching time. I’m not sure if knowing about others who have experienced similar circumstances is helpful or not. If it is, this woman Angie Smith wrote a book about her experiences entitled “I will carry you” and has a blog “Bring the rain.” God bless
Amy
Danielle, I am so sorry this is happening. You are an incredibly strong girl. You are a survivor. Take care. We are praying for you and your family.
Alice Roberts
I’m sorry sweetie…you and she are in my prayers
Joy Full
So glad you wrote. Pain has ways of escaping thru all God’s creatures; thru various measures. You will find strength, support and comfort because you love. Love is wider, deeper and bigger than us all; however collectively we, our ears, our hearts can be a balm. You have our ear, you have our hearts. Miracles are for anyone and everyone.
Emily
Danielle, my heart is breaking for you guys. Especially knowing the anguish first hand of carrying a baby with a poor diagnosis. This particular blog was so helpful for me during that time in which we discovered our son had a life-threatening diagnosis at 12 weeks.
https://angiesmithonline.com/audreys-story/about-audrey/
We ended up losing him. But I will say that being grounded in faith carried us through this most awful time in our life. I am praying that God gives you the kind of peace and love that I felt during this difficult time. I also highly recommend the book “Jesus Calling” by Sarah Young. It really helped me to hear his voice. Praying for you all.
Dani
Families are forever, eternal. You are giving her the greatest gift, just by carrying her. But she will be yours for eternity. May I suggest Now I Lay Me Down To Sleep? They are a wonderful compassionate organization.
I will be praying for peace, and comfort for your whole family during this time of your earthly lives.
Bruiser1
Stand strong and we will be strong for you. Mom is a warriors name and we stand behind you in this terrible battle.
Mercedes
I don’t know you… but I just wept before the Father’s throne in pray and intercession for your girly. I pray that the devil would not rob this earth of another nation changer. Of a woman of God who will shift atmospheres and usher in the light and love of His Kingdome. That in a time where it seems like evil is so dark and so overwhelming that the light of Gods glory and his strength would burst forth for you. I pray that that blood of Jesus that was shead for Aila and His body that was that was broken for her healing would flow through her right now and bring strength to her bones. That she would be born healthy and whole and be the miracle she is intended to be. I also pray that God would strengthen you and your husband with all faith and that He would fill your minds with truth. He has healed countless lives, opened wombs and raised the dead. He knew us and formed us in our mothers womb, and he knows Aila. I pray He he would go before you, be your guardn and carry you through this season. I pray hope would rise.
amber
Praying and believing for a miracle. I speak life over your little baby girl and I believe healing is happening right now in the name of Jesus *hugs* I will be lifting Aila up in prayer continuously. This is not God’s plan for her life, God is good.
Joyce
my prayers are with you.
Hannah
My eyes are filled with tears for you and your family. Your eloquent words give us a glimpse of what you are going through. My thoughts are with you.
auntiegogo
Praying peace and comfort for you and your sweet family. May God hold you close.
Patricia Linkous
I just cried. You’re a wonderful mother. That beautiful little girl is so lucky to have you as her mother. I pray for peace and comfort; and for Grace to surround you so richly. Jesus is always with you. If times come for your little girl to go, Jesus will hold her with His loving arms. Do you realize how close by she’ll always be if He’s with you always?
Kristin
My heart aches for you Danielle, and you and your family will be in my thoughts.I
Lisa
so touched that you are sharing such a personal and heart breaking time with all of us. I recently listened to a podcast on the Longest Shortest time that you may find comforting. Another brave mother tells her story and it helped me process my own loss. xo
https://longestshortesttime.com/2014/04/30/podcast-29-the-shortest-day/
foodiejudi
Oh my such sad news I am so so sorry with what you are going thru. My heart and prayers are with you and your family
April and Greg Mahaney
Your sweet baby girl, you and your family are in our prayers. So sorry you are going through this.
Nancy Steinman
I’m so very sorry and am sending prayers and love to you and your family. You are a kind, loving person and have expressed your sadness with much beauty.
Holly
So sad for you. Praying for God’s awesome peace to flood your hearts.
Christine Wipson
Praying for you and your family. So sorry for the pain that you are going through. So thankful that you are loving your sweet girl through this time. May the Lord of all comfort grant you peace that passes all understanding.
Megan
Father God we just are in total agreement for healing for Aila in Jesus name. You formed her and knit her together in Danielle’s womb. You know every hair on her head. You formed every strand of DNA yourself father God. You are the healer and the greatest physician and we ask you God to heal this genetic defect. Your word says that by your stripes we are healed. The Walkers love you God and heaven is there home. THere is no sickness in Heaven therefor there is not sickness in them either. We give you glory for this life Lord Jesus and trust in you that your name will be lifted up and gloried in all thing. We command peace be still within this family. In the powerful mighty name of Jesus amen.
framma
You may not get to know her in this world, but you will in the next. People who have had near death experiences report this.
Kathleen
I’m So very sorry for you and your family. You will be in my prayers during this time.
Michelle
So sad to hear this news ..lifting you and your family up in Prayers..
Beth
No words are sufficient, so just let it suffice to know that we are praying for you all. Praise His Name, that He is in control, and that you have faith and find strength in Him.
Michelle
I just pray over your family and your sweet daughter’s spirit. I pray for strength and courage to be able to deal with the heart break you are in. Let your lives be showered in grace and mercy and healing. I pray joy in the midst of this trail, and speak life where hopelessness may abound. I lift up your little daughter’s heart to her Creator that he may breathe strength into her bones. I think you made the right choice and that your choice honors the Lord. I bless you in this journey and thank you for sharing so that we can pray over you and your daughter.
Margaret
I am so sorry to hear this news. I will be praying for you all. Thank you for your beautiful faith and willingness to share it even through the dark valley.
kelsey
Praying for you, sweet Aila, and your family.
Diana
Praying for you and your sweet family, Danielle. Thank you so much for sharing with us so that we can lift you in prayer.
Shelli Bullard Trowbridge
So very sorry, I know The Lord has a plan for you and for this sweet baby girl. May you feel The Lord very near you now. He will never leave you or forsake you, we will be praying for you.
Michelle Wolff
Please visit http://www.rememberingforgood.com in case you need it. I want to cry for the situation but I will join you in thanking God for every precious second she is with y’all
lp
I cannot immagine what your family is going through at the moment, but I can say that I am praying for you all. a few of my friends have walked through something similar (https://elizabethblanco.blogspot.com/search/label/Haddon and https://saramcnutt.blogspot.com/p/story-of-grace.html ) and I can say that i have seen the peace God has brought to them. I am praying you seek comfort in His will no matter what. much love, LP
Dawn Bartels
I’m so sorry. I, too received devastating news at 20 weeks that my baby girl had no structures above her eyebrows. I was induced and gave birth at 21 weeks to a stillborn baby girl who was tiny and beautiful. That was 20 years ago and she is buried with my younger sister who was killed at the age of 17. I feel your pain and pray for you all. God bless you.
Sharon
I am so sorry that you are going through this. I just can’t imagine. My heart goes out to you and your family.
Joy DeKok
Praying.
Suzanne T
Love and Light to you and your family xo
Lindsay Briana Schnell Prater
I just prayed for your family. Heartbreaking.
“Through the calm and the storm
In the chaos
Though the mountains will crumble
You will not”
“More Than Anything” from All Sons & Daughters (O…: https://youtu.be/oQBkudqHkv8
Deanna N
I am so sorry for this heartbreaking news, my family has lost a baby in utero and I agonize with what your going thru, please know we will be praying God works a miracle with Aila and gives you and your family strength and faith to get through it all ((((hugs))))
Stephanie
Debra Davis wrote a wonderful book about how to deal with the loss of a baby. It helped me a gray deal when my son was born. I’m so sorry.
Tracy
Tyra
Please look up on utube. Beautiful celebration of life of their child whom they lost right after birth. Really inspirational in a time like this. “I will carry you- Angie smith”. Prayers with u and your family.
Patty
Praying.
Sheryl
Please make sure Danielle sees this. It is so hard now, but you will learn that your heartache will educate, inspire, support, and encourage others. I have gone through this twice. Two different genetic disorders the first time a surprise, the second we knew and pondered the same way your family is. Take lots of pictures of your baby girl. You may not want them right that minute as the pain will be raw. We now cherish the photos of both of our boys as it is all we have. We were offered to bathe our son (the first time) after he had passed. I couldn’t bear the thought! We were offered again the second time – also after he had passed – my husband said yes. I laid in the hospital bed (c-section) watching him bathe his son so carefully. Heartbreaking! My husband regrets to this day not bathing our first. It is not for everyone, but be aware it may be offered. Talk to you daughter every day using her beautiful name. That will begin your amazing bond. Take your time once God has taken her. There is no rush – you make the timeline. I would never wish the pain and heartache on anyone as it is like no other. My thoughts and prayers are with you at this difficult time and for the future. Please, I know it may sound morbid, but remember the pictures. Years later you will be so glad that you did. God bless.
Heather Ann Vargas
Anything is possible with God, I pray for a miracle for your baby girl, I couldn’t even imagine! Prayers for you and your family!!
Mary Catherine
Sending loving healing prayers to you and yours
Another mother
So sorry! Praying for a miracle!
Pam
Heavenly Father, Only You can comfort and guide this precious family right now. Hold them in Your arms tightly and grant them Your peace with what lies ahead. In Your son’s name, Amen
Shelly R
Oh Danielle, I cannot fathom what you and your family are going through right now, but I know God will carry you through. And Aila will be healed, either here on earth or in our Father’s arms. Praying peace and comfort during this time.
Audra
I can’t imagine what you are going through. You and your family are in our thoughts and prayers
Meg @ Peaches & Cake
Dear Danielle, I am so saddened to hear this news. At 30 weeks pregnant myself, I completely understand how connected you feel with your unborn baby in the womb. I can’t imagine what you must be feeling. May God give you the strength to get through this! She will go straight to heaven
Mellymelsd
Sending you virtual hugs and healing thoughts of love and comfort. My heart is with you and your family.
Fran
My heart and prayers are with you and your husband. St Gerard Magella intercede for a miracle for this wonderful mother and child. St. Gerard, you lived your life among people who asked for your prayers and blessings in the many concerns of their lives. In your kindness you presented their needs to Jesus and obtained an answer to their prayers. Help all those who call upon your intercession to experience the healing presence of Christ within them. Our confidence is strengthened by your words of encouragement, “Trust with lively faith that you will receive everything from God.” Be a friend to us, St. Gerard, and help us to walk in the light of Christ. Following your example, may our lives proclaim the love and mercy of Jesus in all our actions. Amen.
Dawn Burgess
My heart goes out to you and your family, I will keep you in my prayers
Cynthia Albert
Dear Danielle,
I posted earlier, however, I want to add that this afternoon I baked your world famous sandwich bread for the hundredth or so time….It is my absolute favorite and your cookbook lives on the island counter of my newly remodeled kitchen. After baking, I came to check my messages on FB and discovered your story posted today. I have been in tears ever since…..I consider you family because you have added so much joy in my kitchen, and I just want to say how much you are loved and adored for how much you have given to so many.
Praying and Sending love
May my humble words bring you comfort…..Just know there is so much love behind them and profound gratefulness for you and your work in them…. Remember that her life is yours to share right now. During pregnancy we introduce our children to the world. Bring her special places. Share beautiful music. Create glorious memories. The two of you have all eternity to reminisce about your special adventures. Rest assured, life is in God’s hands. It is perfected in HIS time. Rejoice in the intimacy you share. It is enough for Aila. Be open enough to let it be enough for you too. Some ecstatic experiences last a few moments, but fire a lifetime of spiritual devotion. May that joy fill you just as thoroughly and completely. The intimacy you share already transcends the physical world, stretching to heaven and all spaces in between. TRUST HIM. Let Him reveal in whispers the amazing truths of love…
Colleen Cox
I’m on your blog for the first time and I’m moved by your situation. My prayers are with you all! I believe in miracles and also that EVERYTHING comes sifted through the hands of a loving God. Blessed be.
MrsMeganC
I’m so sorry and heartbroken for you! My thoughts and prayers go out to you as you mourn.
If you haven’t already heard about her or know about her Angie Smith and her books may be an encouragement for you.
sherice
My heart breaks with yours. You and your family are in my prayers. <3
Gal
I have been where you are, written words so close to yours. My heart reaches out to you. We also received our care at UCSF and you are in amazing hands, for Aila and your whole family. Please know you are not alone. Please know you are deeply, deeply held. Always. With love.
Suzy
My heart aches for you and your family…thank you for sharing and allowing those you have helped so much, share in your suffering and lift you up in prayer…
I will be praying for God to give you the Grace you need in the moment, for joy and delight in the now, and for mercy in the suffering. Much love.
Maryssa
I dont know much about this condition except what I’ve read in a Jodi Picoult book called “Handle with Care”, but I know first hand what is like to be faced with an uncertain future due to illness. May God bless you for not terminating the pregnancy as many other women may have. We do not know why these things happen, but God never leaves us. Dont lose hope or strength. Your family will be in my prayers. ♡♡♡♡
Rogina
From one mommy to another, I’m lifting your family up in prayer! I’m not sure why some things are allowed into our lives but I know we serve a good, faithful and loving Father. I’m praying you will feel His arms wrapped around you as you walk this path.
Nancy Wilson Johnston
I will be praying for you. Have you seen the movie or read the book “Heaven is for Real?” While we pray for a creative miracle in your womb to make Aila whole, you have the comfort of knowing you WILL meet her in heaven. God give you grace and peace through this journey.
Laurieann
Danielle, How brave of you to share your story in such a vulnerable time. As someone from a family with OI, I can see I join the ranks in wanting to share stories of hope for you and your family. Instead I will simply share that we are walking beside you, sending prayers of love, light and healing.
Patty M
I am sending you lots and lots of Loving and Healing energy!!! You will be in my prayers.
Emily
Much love and prayers for you! I have been there. My sweet Daniel had a lethal skeletal dysplasia, too. Thanatophoric Dysplasia, type II. I remember getting that news like it was yesterday, but it also feels like a lifetime ago. He was born three years ago and lived for 32 minutes. I want to tell you that the day he was born was a HARD day, but also such a beautiful day. A very special day and the most sacred of my life. I’m sure you have had many people reach out to you and offer friendship, and you can add me to the list. If you ever want to chat, I’m here. I know what it’s like to face months of pregnancy knowing I wouldn’t get to bring my baby home. I also want to tell you that my family is doing well. We miss him and think of him every day. My older boy talks about him all the time and does sweet little things to remember him almost every day. So he is never forgotten and we miss him so much, but life is still sweet. I remember wondering how this could ever be okay. I knew he wasn’t going to survive, so I had to put my faith into knowing that we would be okay. I will pray for you and your family. I know prayer works. I hope you will feel lifted up and comforted in this very difficult thing you have been called to do. I remember when I was going through it, I felt like I heard so many other sad stories, and sometimes I felt like I needed to just deal with my own sad story right then. So I don’t want to force my sad story on you, but I do want to be available as a friend to you if you ever want to talk to someone who has been there. [email protected]
Amanda
We also have been in this position, asked to choose between ending the pregnancy or letting go and ‘letting God’. We made the decision to try our absolute best to bring our daughter into the world, even if it was only for a few minutes. We don’t regret it! Praying for you and your entire family in this difficult time.
Katie L.
Danielle,
LAST NIGHT my cousin gave birth to a beautiful baby girl, Alyssa Jane, who weighed just 3 lbs, with a cleft palate, a heart defect, and her liver was outside of her body when she was born. My cousin and her husband were also told several months ago that they should terminate the pregnancy, but they elected to see the pregnancy through as long as there was still hope. My cousin was put on bed rest and contraction-supressing medication for over a month until her water broke yesterday evening. Baby Alyssa wasn’t expected to survive the birth, but she did and is doing much better than expected – MIRACLES DO HAPPEN.
We don’t know each other, but my heart is with you right now.
All the best,
Katie L.
Amber
My heart mourns with you and my prayers will ever be for your family and over this situation. This is heart-breaking, but your faith midst it all is encouraging. When we are weak, Yahweh truly is strong.
Alie
I lost 2 in the womb at separate times. One had Triplody. I have a live handicapped child with 2 syndromes and a healthy child. I understand your pain. Virtual hugs! Reach to God for comfort.
Donna
I’m so sorry to hear about your child. My daughter suffered a molar pregnancy 3 years ago. She was @ 10-12 weeks when they had to do surgery.. It was very hard on our family.She now has a beautiful 15 month old daughter and a 2 week old son. We do not know why our children suffer in the womb, as mothers we can protect them and love them when they are there.But sometimes things are beyond our control. We just have to be strong and keep them in our thoughts and prayers. And when we lose them mourn the loss and never forget them.
Michelle
My husband and I just finished praying for you and your family. I am so, so heartbroken for you. Praying The Lord will give you grace to make it through-minute by minute.
Darlene
So sorry to hear this news. I will be praying of your whole family. There is nothing more
to say that will help ease your pain. May God be with your family at this difficult times.
Michelle Hughes Kaiser
Prayers for you and your family
Liz Cowans
Nothing, really, is ever lost in the Lord. Families are forever. May the Lord send Angels to comfort you. My prayers are with your family and my heart goes out to you. John 14:27 has always helped me at times.
Francis
Believe it or not, there is support available. Be Not Afraid is a support group for families who have serious fetal diagnoses. The group was started as a Catholic ministry, as Catholic church members would typically continue these pregnancies for religious reasons, but the support is available to anyone in this situation. Whether you want to speak privately with other couples who have been through this, brainstorm ideas for how to celebrate the short time you spend with your daughter, or start coordinating with other professional resources in your area, above all please remember that you are not alone.
https://www.benotafraid.net/
Nicole
Prayers for you and your entire family!
libby
Your family will be in my thoughts and prayers for that miracle, love and blessings
Michael Brinegar
No Words can I share, old Neighbor, nor emotions I can rightfully express. “I am Sorry”, seems so shallow at a time , like this. God is the One I always turn too, so now again, I will ask his help for you and your family. Please take care of yourself. Michael
Jana
Danielle, I was once in the same situation you are in now. I wasn’t sure how to proceed and how to face the days ahead. I decided that I was going to be the best Mommy to my little guy for as long as I had him. I took care of myself and made sure I got lots of rest, while I was loving & protecting him in my tummy. He was well loved by our whole family. Once he was born, we had him for 12 wonderful days on earth, before God took him home. I’m praying for you as you love your Aila. Jana
Sandy
Much love to you and your family…
Barbara Church
I am so sorry. I am holding you, your husband, Asher, your sweet baby Aila, and your extended family & friends in thought & prayer.
Sheila Harris-Bowman
Prayers and blessing be with you and yours.
Jenn Foy
I am so so sorry. Sending love your way.
Lauryn
Will be praying for you and your family. I found out my baby girl, Madilyn Grace, had a lethal condition call Triploidy (3 sets of chromosomes) at 18 weeks. I was able to carry her to 20 weeks before she met her Jesus. I loved Todd and Angie Smith’s (from Selah) book and song “I will carry you” during this time. https://youtu.be/LmJXw5wjTow. May God keep you in His perfect peace.
Vanessa Marie
God bless you and your family for your strength and being such witnesses of love to the world. Thank you for giving your precious daughter the chance to live and be loved even if the time is short. You are in my prayers.
Jennie Lane
Prayers of peace and love and God’s blessings to you and your family.
kirsten
Thoughts go out to you, I lost my Isla (Eye-la) to SIDS at 5 months a few months ago. Very hard road to travel, but it is a road, others have been down before. Have strength in those before you. Check out the organization ‘Now I lay me down to sleep’
Mika
I am so so sorry that you are going through this. You are in my thoughts and prayers.
Txfam
I pray in the name of mighty Jesus for a complete healing! And for comfort and strength that only the Holy Spirit can bring.
Dana
Your story sounds so familiar…6 years ago it was mine. At a 22 weeks we found out our daughter, Rhae, had some form of skeletal dysplasia, most likely OI type II. At 26 weeks it was confirmed with several fractures. Each ultrasound the news got worse. At some point, we stopped listening to “the experts” and found the peace that our girl would live with is or with Jesus, and we were OK with that. Rhae is now a thriving 6 year old who just completed kindergarten! She is much smaller than her peers but equal in all other ways. She walks with a walker and uses a wheelchair as well. She has had 199 broken bones and 14 surgeries. NONE of that slows her down! She is a light in our lives and so many others. I can’t imagine life without her, or frankly, without OI. By DNA, she is a type 2/3, but clinically she is a severe type 3. Come over and join us on OI Parents on Facebook. I’m one of the mods and can accept you as soon as your request comes through. We can connect you with other families in your area that understand and can help you learn what you n3d to in preparation for Aila’s arrival. They can also help you find experienced docs in your area. There is so much hope. Just don’t give up…and realize that docs usually give the worse case scenario.
thermomad
I’m so sorry for this news!
Christy Largent
I am just so very sorry to hear this Danielle. Bless your heart. Please know I will be praying for you and your family during this painful time. So thankful you can trust the One who Loves You BEST in all of this. Just hang on to Him. Praying you will feel HIS grace in the midst of all. Big hugs coming your way from Redding.
Jamarys
our God and savior has a plan even when we dont know or understand it and even when it hurts. Lean on Him and He will see you through. my prayers and love are with you, your husband n lil Asher.
cindy
All my love and prayers for you and your family. Lean on each other and Our God for strength and remember He will carry us thru and when we cannot stand, just kneel. God be with you every moment.
Scott
Just wanted to share – I’m a family doctor, I no longer deliver babies, but I did for about 10 years at the beginning of my practice. One of the most heartbreaking but beautiful birthing experiences I ever had was with a family in a similar situation.
The mother’s name was Mary and it was actually a Christmas Eve when she delivered her baby girl. The daughter delivered early with a similar bone condition. We all knew she would not live long outside the womb.
That child was delivered and immediately passed into the loving arms of an entire family, gathered there to meet and welcome her into the world, however brief that time was to be. She spent about 30 minutes in the presence of her family, before she was called to the presence of her Creator.
But, here’s the thing: that child lived her ENTIRE LIFE knowing only the love, soft words, sounds and sights of her parents and family. There was not a second of her life where that child was not literally in the arms of those who loved her most. She did not suffer. She opened her eyes, cried only a little, and lived her whole life experiencing only love, companionship, and new experiences.
It was heartbreaking, but it was also…..a miracle.
I’m sorry for your grief, and the sudden turn your future and expectations have taken. But know that even in the times of greatest sadness, there can be beauty and unexpected peace.
Blessings.
Marlene
Truly, beautiful….both the story AND your spirit in recognizing the preciousness of the moment and sharing this story of love with others.
Susan Parker
Beauty from ashes
Beth
Beautiful
AkLady74
That was so beautiful! I work in a hospital myself and see the happy families and the grieving families. My heart always hurts for those who lose someone they love but from now on, I will think of your story and look at things so differently. Thank you for sharing.
Jessica
Thank you for sharing this, Dr. Scott. What a beautiful way to put this. My aunt lost her twin boys in the 80s because they were born much too soon and if I could have told her this all of those years ago, I imagine it would have helped so much. Thank you for sharing. Danielle’s loss is so heart breaking but you are right, her beautiful daughter knew only love.
Karen Phelps
“But, here’s the thing: that child lived her ENTIRE LIFE knowing only the love, soft words, sounds and sights of her parents and family. There was not a second of her life where that child was not literally in the arms of those who loved her most. She did not suffer. She opened her eyes, cried only a little, and lived her whole life experiencing only love, companionship, and new experiences.” Aside from God’s own words, this has to be one of the most beautiful things I’ve ever read. What a beautiful insight and truth. So awesome of you for seeing that and sharing it with us.
emily
<3
Elena Lynch
Stay strong for your sweet girl, and do not let a diagnosis determine the fate of your daughter. Odds may be against you, but fight as you have always done. There are always exceptions to the “rule,” and God has a purpose, regardless of how difficult the outcome. God bless you and your family.
Julie
Weeping and praying for you all from Oregon.
Shelly Honn
I know it is unfair, but God would not give you more than you can handle. He picked you to carry this little angel for him. You are blessed, please take care of you and know that you and your family are in my thoughts and prayers. I wish there was some sort of wisdom and solace I could give you to help with this heartbreaking news.
via Rayna
My heart is with you, precious Aila, and your entire family, Danielle. Love and light to you.
raquel soto
Praying for a miracle!! God can do the impossible!! God I pray your will been done!
Vicki Zoller
Please contact Now I Lay Me Down To Sleep, http://www.nowilaymedowntosleep.org. This organization provides incredibly beautiful images of your time with your baby girl. The photographer in Maui is amazing and kind.
Please let us know if we can help in any way. I am the Regional Coordinator for NILMDTS and cover the Hawaiian Islands.
Vicki Zoller
foodie4healing
I do sorry for your struggle. I endured 2 miscarriages, so I can relate at a minor level. I wanted to recommend the book, “I will carry you” written by Angie Smith. She had a similar situation as yours. I found the book very healing and I think it could bring you some comfort. I’ll be keeping you in my prayers.
Kelly
I am new to your blog, and my prayers are with you. I suffered 3 miscarriages between the live births of my daughter and twins. Your faith will carry you this.
Lisa G
I am praying for you for wisdom, strength and complete understanding of God’s will. This has to be gut wrenching and I am so very sorry to hear this…
Holly M
My heart is heavy for you and your family, Danielle. You and your family are in my thoughts and prayers.
Molly Ries
This is a tradegy, prayers from St. Louis
Laurie
I am so incredibly sorry. I know that’s not nearly enough, but please know you are in the prayers of strangers who care for you and your family.
LauraS0725
Danielle, my heart is breaking for you and your family. I will be praying for you all to some how find comfort in this very difficult time. Big hugs!!
Laura Smith
sadie
My heart goes out to you. I had a similar situation. At my 20 week ultrasound with my second child we were diagnosed with hydrops fetalis of unknown origin (usually they can determine an underlying cause). Our son Arlo was born at 30weeks on 12/26/12 because his heart was failing. He stayed with us for 20 min before he went to be with the Lord. I thank god every day for every second we had with him. Make the most of what you can and know that you will come out on the other side.
Lily E. McCormick
My thoughts and prayers are with you and your family. I gave birth to a son in 1987 he was born with a heart defect HPLHS. The day he was born I was told he would only live 24 hours. He lived for 6 1/2 months during the time he was with us he was surrounded by so much love. He swam in the lake, felt the rain on his cheeks, hiked with his aunt in the mountains, laughed with his big brother, was tickled by the kittens whiskers. He was such a joy for all that surrounded him. I carried him for 9 months our hearts beating together. I still carry him in my heart today. He has continued to travel with me on my journey in life. God has blessed me with other children some I carried under my heart. Others that God sent into my life. I have been blessed to know their love. Just as you have been blessed we may not see the blessing until later in life. It will be shown to you in time. At dusk I light a candle to send light into the world know that you are not alone. Dusty is with me as your little one is with you.
Megan
I’m praying for healing and for peace. I pray that you find rest in the arms of Christ and that he gives you a peace that passes all understanding. My heart goes out to you and your family.
Cathy
So very sorry to hear of this. Praying for you and your family during this difficult time.
Susan
Praying for you…..
Mary
Please do not give up hope!! Miracles do happen!! Please check out http://www.awmi.net and listen to the healing testimonies!! One woman’s baby was diagnosed with Down’s syndrome and her baby was healed. Another baby was born with only half a heart and now has a fully functioning heart!! Please take the time to listen and pray before doing anything. After understanding that Jesus has already provided healing and that all I had to do was believe and receive, I have been healed of fibromyalgia and plantar warts on my foot that plagued me for 4 years. I had about 40 of them on my foot and they were spreading. Everything I tried before did not work. Also, my son who had sensory integration dysfunction for 17 years has been healed just recently. I tell you this so you will have hope!! Jesus is bigger than this malady!! Hugs and prayers to you!!
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https://vaporandmist.wordpress.com/2014/05/23/it-is-so-unfair/
This family found ways to celebrate their baby while she was still in the womb. this is a recent blog post, you will need to go back and read. Prayers for you and family.
Carla
I’m so sorry to hear this news. We will keep you in our prayers. May God grant you His peace.
Sue
Words cannot express the heartfelt emotion that I am feeling for you and your family. May God hold you in the palm of his hand and give you the needed peace that only He can provide. Grasp the hand of Jesus reaching down through the clouds to hold onto yours at this time.
Jeni Cakes Nut Free
I am so very sorry. I will keep your baby and your family in my prayers and hope for that miracle. Much love to you.
RACHELLE SMITH
PRAYING!
Evelyn Buchholz
I so sorry , prayers for strength ,for health , and happiness , god bless you and your family