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]