When I came home, this note was tucked inside my door. Not everyone knows about Abigail yet, so I'm not sure if the writer of this note knows of our sorrows or not, but since we've moved to this small town in Utah, we have been visited by so much genuine Christian charity. It has definitely made a big difference in how supported we have felt through this journey so far.
The Maternal Fetal Medicine specialist I saw spent nearly two hours with me under ultrasound. We took one break in the middle so I could get up and walk around for a bit. For the doctor it was an intellectual challenge to decipher the ultrasound images to find exactly what we were dealing with. For me, it was an emotional challenge to lie there and process what I was understanding from our conversation. The doctor was pleasantly surprised when I asked about Abigail's meninges, the covering membranes between the brain and skull in a normal healthy person, and when she found out I had been taking Neurobiology, she was kind enough to talk to me as if I were capable of understanding what she was seeing. This was nice. Even though a fair bit of the vocabulary she used was still over my head, I feel I was able to get a much clearer picture of what is going on in my womb with my precious sweetheart baby.
Remember how I had said that Abigail's body was utterly perfect except for her head? Today we found out that it's not the case. Abigail doesn't have classic anencephaly, which is a neural tube defect where the tube doesn't close all the way at the top and the skull and brain don't form correctly. Instead, something went wrong quite randomly in the earliest days of pregnancy. The condition is called ABS, or amniotic band syndrome. The amniotic membranes around the baby rupture for some unknown cause, and the resulting bands of amnion can wrap around the baby's body, fusing with her skin, and, most importantly, interrupting development. This is what caused her anencephaly/acrania.
We have received much emotional support from an anencephaly support group on facebook for parents and grandparents dealing with the grief and joy of carrying a child to term after this diagnosis. We have so much in common with them because of Abigail's facial and cranial deformities and the reality we face of her impending death. But it didn't take me long at all to realize that most of the other parents on the anencephaly page were giving birth to babies with nearly normal faces, the only disruption being the back and top of the skull which were usually covered quickly by a baby cap after delivery. These babies look so sweet and, as I said, nearly normal. I already knew Abigail didn't have the same situation, and every time I saw the beautiful faces of the anencephaly children, I felt a twinge of jealousy that they could look into their baby's eyes. Before our appointment, we didn't know if Abigail had any eyes. And I knew, after my Chemistry professor handed out earplugs for a particularly ear-shattering classroom demonstration/combustion, that she couldn't hear because she didn't stir a bit when the explosion sounded.
During the appointment, we looked for eye sockets, anything that could be eyes. Even the experts couldn't find her eyes. She has lips and a nose, but the rest of her head consists of miraculously wired but abnormal brain tissue. This brain tissue allows her to move normally in the womb and her heart to beat strong and steady, keeping her alive with me. She is strong and beautiful in her own unique way, but she doesn't have what the rest of us were blessed with. She is blind and deaf. These were sobering realizations for me.
When the doctor saw that her little hand was actually classic to amniotic band syndrome, she began to form her theory. She searched around some more and found a club foot, also tied into the amniotic membrane. It also appears that amniotic band syndrome was the cause of her interrupted cranial and facial development. The skin of her head is tied into the placenta along the wall of my uterus. She seems to have one free hand and one free foot, normally developed, which are active every single day and help me to feel a connection to my child for which I will always be grateful.
When I got home, I visited a support/awareness page on facebook for amniotic band syndrome. Again, I found that Abigail's case is more severe than most. So many of the pictures on that page were not of tiny babies fighting to live but of healthy older children missing whole fingers, or hands, or legs. They used hashtag #luckyfin and were happy and adorable, despite their struggles.
There is even a famous NFL player with ABS who is missing a hand and rocking the football world. But in Abigail's case, the amniotic bands had taken more than a few fingers or a leg or hand. They had interrupted the normal development of her whole head. They had taken her chance to live beyond birth.
As the doctor prepared me for what birth might be like with a child who is so sewn into her membranes, I cried and cried and tried to be brave. She will most likely come out all at once, and she will most likely be stillborn. There is no way to predict for certain because babies have presented themselves to the world in many miraculous ways, despite diagnosis and prognosis. But given what we can see in the 3D ultrasound, it's not encouraging. Abigail has been alive for over six months, and she has less than three months left of life on this earth.
Less than three months to live.
In all the time she has been here, she has been living vicariously through me. She eats what I eat. She breathes the quality of the fresh country air I breathe. She experiences the vibrations and to some extent the emotions that I experience. To know her physical experience precisely would be impossible. There is still so much specialists can't perfectly determine about the function of the normally developed brain. Abigail's one-of-a-kind brain is a whole different story. However, I draw strength from the faithful words of my Neurobiology teacher, that Abigail's "spiritual senses are perfect." I believe that. I believe that she is having a physical experience that is suited and custom-made for her, and that her spiritual processing of that experience will stay with her forever. She will forever be bound to us in the love we share, and she will forever be "bone of my bone and flesh of my flesh." Our heartbeats pound together and settle down together. She is experiencing our family on a physical and spiritual level. She is ours and one of us, and these are the truths that really matter as we gear up to celebrate Abigail's first Christmas with the Lantzes.
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