Anencephaly is considered a neural tube defect (NTF)....the neural tube is a narrow channel that folds and closes between the 3rd and 4th weeks of pregnancy to form the brain and spinal cord of the baby (technically speaking, the embryo). Anencephaly occurs when the tube on the head end of the neural tube fails to close...causing absence of a major part of the brain, skull and scalp. According to research material, babies born with anencephaly are "usually born blind, deaf, unconscious and unable to feel pain". However, I have talked with many women who have anen angels who speak very differently! One in particular said of her son, who lived for 55 hours (and I quote her words) "Anencephalic babies DO feel, they feel pain, pleasure, and most importantly, they feel our love." Babies who have anencephaly are usually born asleep, even if they survive the trauma of birth, they briefly live....up to a couple of days.
Unfortunately, I wasn't one who was blessed with the ability to have given birth to a baby who was screaming at me. I prayed & prayed.....I asked the Chaplins at the hospital to pray as well....that God grant me the miracle of Brinley being born alive. I wanted so badly to hear her cry, even if it were only for a brief moment. We had listened to her heartbeat for hours but when she was in the birth canal it was hard to keep her on the monitor because she was so far down and she was so small. Even through the hardest part of my labor, I was begging God to let her be born alive!! But I didn't get my miracle....she was born asleep. But they had to cut the umbilical cord before they could hand her to me (the cord wasn't long enough)...I wanted nothing more than to hold her. I didn't care that she was still covered in all the "stuff", I didn't want them to get her cleaned up yet, I wanted her skin on my skin.
After a few minutes they did have to take her briefly to take the tissue sample that was needed from her. ( .....By the way, Duke University has been conducting a study on NTD since 1993. (They are studying the cause of anencepahlay and spina bifida.) We choose to participate in the study. For the study, Leif & I both had to donate a few tubes of blood and they took a small tissue sample from Brinley (extremely small sample...just enough to get her DNA). We won't get any answers as to why this happened to Brinley, but very little is known about why this happens to any baby....without a definite cause there will never be a cure.) By the time the nurses got me unhooked from all of the monitors, my IV and the epidural...yeah, the epidural that didn't work....I was able to clean myself up and they had her back to me. It didn't seem like she was gone long at all, but then they had my attention directed in 4-5 different places. At the same time that the room calmed down and the nurses were leaving, the doctor was bringing her back to me.
Our beautiful baby girl was all cleaned up and we were able to take her footprints, rub her down with oil (her skin was so dry), and get tiny bonnet on her head. She weighed 5.6 ounces and was 16cm in length....extremely tiny....she fit in the palm of our hand. Leaving the hospital, later that day, was horrible! Leaving her with the Chaplin was quite difficult, walking out of the hospital while watching other mothers carry their newborn babies out to their awaiting vehicles wasn't any better. I'll never understand "why" God chose me to give birth to an angel...not that I would wish the pain of losing a child on anyone else....but why did my baby have to die. I had to pull it together, Brinley may not be with us physically but this was her birthday and that is something to celebrate! On our way home, we wrote a message to her on a couple balloons and released them as we sang "Happy Birthday" to her. We know that she is watching over us, and we know that she knows how much we love her.
We had her Memorial Service on the 18th....the ceremony was beautiful. The songs we played were perfect for what we were feeling & the thoughts that we were thinking. (*Beauty From Pain by Superchick* *What Faith Can Do by Kutless