Heather discovered in her 16th week of pregnancy that her son, Grayson, had Anencephaly.
Her providers gave her the option to terminate the pregnancy, but she and her husband prayerfully decided to continue with the pregnancy. Heather says,
“My husband and I, we started prayer and we knew that God knew since the beginning of time that He had us for this.” (source)
Deciding to carry to term or not is the most difficult decision a parent could possibly face for their child – regardless of how they choose.
And yet, this is not the only painful choice a parent faces, when they learn they have a baby who has Anencephaly. Recently, Private Practice aired an episode in which a mother gave birth to an anencephalic baby, and made the decision to donate his organs, raising the question, can Anencephalic babies be organ donors?
“Theoretically they can. In practice, there are certain problems. The science of organ grafting in newly-born babies is incipient; its medium-term results are not well known, whereas its long-term results are not known at all. The organs of an anencephalic child can only be removed if the child has been certified dead. However, the criteria that define cerebral death cannot usually be applied to children under 7 days old. Before cerebral death is confirmed, the organs of such children may become so damaged that they are unfit for organ-donation. Anencephalic children do not have a rear brain but they do have a forebrain which usually functions normally at birth. The forebrain dies slowly and other organs may die in the intervening period of time. It has been observed that clinical cerebral death (complete absence of reactions and reflexes and absence of spontaneous breathing) almost always occurs after the heart has begun to fail. Therefore anencephalic children would only rarely be able to donate organs. In some countries / states, the heart valves can be removed for use in a later transplant. The problems mentioned above are less relevant because the valves can be removed up to 8 hours after the death of the child and are frozen until a recipient is found. “ (source)
These are both huge decisions: to carry to term, or not, and to donate organs, or not.
And yet these are not the only decisions a family faces when they learn their child has Anencephaly.
A mother can choose breastmilk donation, have special photos of the birth, incorporate special Farewell Celebrations and utilize the help of bereavement doulas, and more, all available here at stillbirthday.
Heather wanted to validate the reality of her son Grayson James, by sharing his photos with her friends on Facebook.
Anencephaly is not easy to look at. There is visible exposure, the shape of the baby’s head is visibly incomplete. Without wearing a newborn hat, bonnet, or wrapping, it is very apparent that Anencephaly impacts the development of the baby’s skull and brain formation. Parents must prepare themselves to see what is missing – what these parents discover, is that they do not need to prepare themselves for everything that is not missing – they see a baby, their baby, and they fall in love with their child. They see their child as beautiful. And then they may want to share that with others. Because, their child is beautiful.
Unfortunately, Heather’s photos were removed- which means they were first reported. Heather responded to Facebook,
“Dear Facebook, All babies are beautiful blessings. Where do you get off saying this angel is offensive?” (source)
Heather and her friends continued to repost Grayson’s precious photos – but then Facebook put Heather on a 24 hour ban from the site.
Photos of Grayson do not violate any of Facebook’s community standards, which you can access for yourself but consist of the following:
- Violence and Threats
- Self-Harm
- Bullying and Harassment
- Hate Speech
- Graphic Violence
- Nudity and Pornography
- Identity and Privacy
- Intellectual Property
- Phishing and Spam
Here is a slideshow of Grayson’s photos. If Heather, his mother, wants to honor her son by sharing the reality of his condition, his short life, his real personhood, his impact on his family, his reach into the world, than we at stillbirthday stand with this mother to help make that happen. We will carry you, Grayson, in our hearts.
We want to see you.
[youtube http://www.youtube.com/watch?v=HJuKJHx69sE]
I want to see you, Grayson. Love and prayers for his family!
Beautiful post as always, Heidi.
Heather if you read this, please know my thoughts are with you and your family. Your baby was perfect and always will be.
God Bless you Heather and your whole family… The courage of a Mom and A Dad makes miracles happen, He may have only lived for 8 hours but he will live on in the memories and photos that you have created…..Shame on you facebook…God Bless Grayson…
We want to see you Grayson.
We all want to see you Grayson!
You are beautiful Grayson! god bless you and your family!
What an amazing and strong woman……Thank you for sharing your story …I’m so sorry for your loss…..so sad 🙁
Thank you for sharing your incredible journey with us all <3 What a loving and beautiful family to come into for Grayson. Much love & strength flows to you all from united kingdom
Truly beautiful. It’s a shame how the world can see a miracle like this as something disgusting. The Walkers, as well as many other families, are an inspiration to God’s work. He creates us to be us, not what the world wants, and thinks, us to be. May God bless you, all.
I want to see Grayson, too, Heather.
I want to see Grayson too, Heather.
Your story touched me, thank you for sharing it. My very close friend also had a baby knowing she would be giving her sweet baby a body just to shortly send her back to live with God. You and my friend give me strenght and remind me how grateful I am for my three blessings from God. I not only pray for you during this brief time with your angle but for those that choose other options and miss out on the love they could feel. Thank you again, I know God will bless you and care for you and your family.
Oh Heather, you and your husband loved that baby just as Jesus would have. I can see Him in you. I can’t wait to meet little Grayson either.
What a special family. Grayson what a beautiful boy. Xo I too have lost a child to disabilty at a young age. My prayers are with you all. Xo
What a beautiful slideshow. We are all made in His image and little Grayson is no exception. What a beautiful baby boy. What an example of living and loving like Jesus. God bless this family and they will be in my prayers.
To Grayson’s parents: Grayson is the most beautiful baby boy I have ever seen. He was blessed to have you as parents and, of course, you were blessed to have him. I’m so sorry for your loss. Perhaps he will meet my little angel baby in heaven. (Hope Garlock – born and wings August 2011).
Thank you so much for sharing precious and beautiful Grayson with us! He is with our Lord! Praise God for His love and yours.
Thank you for sharing Grayson. What a beautiful little boy, what a beautiful family. God bless all of you.
Created beautiful and perfect in the image of God. So sorry for your pain at the loss of your beloved son.
I want to see Grayson. <3 My prayers are with you and your family, Heather.
God bless your family! We lost our precious daughter, Jasmine Faith, 13 years go to anencephaly and also carried to term. Your slide show made me smile ans cry as it brought back so many memories. May your hearts heal gently.
Heather, your and your husbands perspective in this situation is inspiring. The strength to carry a baby full term knowing the outcome will be heart- breaking and difficult is a such a testimony to God’s grace. I think Grayson’s short life carried great purpose, and that his story will not be forgotten by those it has touched. Thank you for sharing.
Thank you for sharing your story and your beautiful baby Grayson with us! Prayers for Grayson and your family
What a beautiful little boy.
Your beautiful Angel Grayson is & will forever be precious. I am disgusted that FB would not allow his pictures. God created him, he was a precious Angel sent from heaven to teach all of us how fragile life is. I thank you for sharing your story. I know after this I will never forget Beautiful Grayson. Thoughts & prayers you are a truly amazing & beautiful family!! Love a stranger Eunice
Heather, I do not know if you will see this, but I just want to tell you how beautiful Grayson was. He was a precious gift from God & I am thankful that you had time to spend with him.
I have never seen anything so beautiful and sad, thank you for sharing, I want to hug the whole family, especially Grayson. I never knew of this condition until now.
Blessings to Heather and Family
Grayson you are a sweet angel and this is one of the most beautiful things i have ever seen. Grayson you touched my heart amazingly..Thank you sweet boy..:)
So beautiful. And so precious. Sweet dreams little Grayson.
I am so glad to have seen you Grayson…and your beautiful family. My heart will never be the same….so precious. He was truly born to the most wonderful family.
To the Walker family… I have come across your story today, and it touches me… You see, I have a 20 year old niece who is today delivering a baby girl with the same condition at Grayson. It takes a very strong woman and family for this… I simply do not know what to say except that you are in my thoughts and prayers today along with my niece…
I had a baby girl in 1968 that had this condition. At the time, the doctor told me my baby “didn’t make it”. I wasn’t told that she had any kind of problem. My husband was told, but the doctor felt it was best not to tell me. I found out several weeks later. I was put to sleep during birth, not C section. When I woke up, there was no baby, just the doctor telling me she was gone. I guess back then, that is how this was handled. I would have liked to have held her. You did the right thing and your baby was so sweet. Thank you for sharing your story.