I look at the empty crib sitting in what was to be our son's nursery, and I can't help but to feel a sense of deep sadness.

You see, our son, Shawn Patrick, only lived for three hours after his birth.  Had he survived, he would have been one year old yesterday. 

Our son was born with a devastating neurotube defect that severely inhibited his chance of surviving. 

That he was born alive was cause enough to celebrate; however, the joy didn't last long:  you see, our son was born with part of his brain missing.

He was born with a condition known as anencephaly.  In simple layman's terms, this means that for some reason his cephalic (head) and neural tube failed to close.  This happened somewhere between the 23rd and 26th day of my pregnancy.  As a result, a good part of his brain was not there.

Children who are born with this birth defect are born without a forebrain, the largest part of the brain, consisting mainly of the cerebral hemisphere (this includes the isocortex, which, in kind, is responsible for cognition, i.e., thinking).  The remaining brain tissue is often exposed.  It is a gruesome defect, one of the worst known scenarios that can ever happen to a newborn child, or a child in the womb.

This is usually diagnosed before birth; how I found out that I was carrying an anencephalic child was through an ultrasound test.  It was one of the worst moments of my life.  My child would be born dead, or if he was to be born alive, he wouldn't live long.  He wouldn't have a life; his life was over even before he was even born.

My husband and I both decided early on that we would have this child, anencephaly or not.  We both had the wild hope that somehow his brain would grow, and he'd come out being okay; however, we both knew that this was impossible.  Our son would never have a good life; it devastated us deeply. 

Our son arrived on schedule:  he weighed 5 pounds even.  A tiny little thing with an oddly shaped head; he resembled an outer space alien more than a human child.  The thing I remember most about him was his large, startingly blue eyes, and his tiny, mewlike cry.  His hands and feet were misshapen, and his head from the eyes down appeared normal; however, he had no eyebrows, and very little in the way of skin covering the top of his head:  his skull, even his brain, could be seen.  It was traumatic; even now I still have nightmares of my son's misshapen head.

I will never forget it as long as I shall live.

Unfortunately, Shawn never left the hospital.  He died three hours after he was born.  He came into the world, and left the same way:  hooked up to a myriad of tubes, monitors, lines to try to keep him alive; mercifully, his heart and lungs finally gave out when it was decided that he'd never have a quality life.

I barely remember the details of the funeral.  All I remember is holding my son after he died, saying goodbye to him, and telling him that he would now be an angel, and that his suffering had come to a peaceful end.   As for the funeral itself, all I remember is the pastor talking about what a blessing Shawn had been in our lives, and then the sound of someone screaming. 

I think that someone was me.

Now it is one year later, and I am still trying to get over our son's death.  I wonder what his life would have been like had he lived.  He would have probably been a vegetable, incapable of seeing, hearing, speaking, even feeling, requiring twenty four hour medical care, probably in a hospital or institional setting.  I didn't want that for my son, so maybe his early death three hours after he'd been born was a blessing in disquise.

Now I spend my time doing research on this devastating condition and to help other mothers going through the same thing I did.  Maybe it's a way to help me heal from my own loss, I don't know; but I want mothers of anencephalic children to know that they aren't alone. 

If there is one thing I wish, I wish that this condition would never even exist.  It is too traumatic for those who are going through it (or have done so), and unless it happens to you (or someone you know), you will never know or understand the terrible consequences it places on families.  Yet there is help out there, and if I can be of any assistance to you, then I will be more than glad to do so.

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For more information on anencephaly:

*Compassionate Friends--an organization for parents who have lost babies or children to illness, disability, accident, or murder.

*Anencephaly Support Foundation--an agency that offers support, resources, and other help for families with children who were born with anencephaly.

*SHARE Pregnancy/Infant Loss--another program that offers services to grieving familes.

*Mourning Mommies--a website for mothers with children born with anencephaly or any other devastating medical condition.

*BeNotAfraid.Net--a pro-life organization that helps families who decide to let their children be born, offering hope, grief counseling, support through love, prayer, and comfort.

*WaitingWithLove.Net--similar to BeNotAfraid.Net; another good resource for families who have kids with anencephaly or are living with devastating illnesses, diseases, defects.