I find Golden Girls references to be fitting for most occassions. In an episode in Season 5, Dorothy suffers from an illness that her doctors cannot identify. She is convinced something is wrong with her and that she needs help, but because her doctors cannot diagnose her they tell her that nothing is wrong. Dorothy has a moment where she wonders out loud if maybe the doctors are right, to which Rose says "Doctors don't know everything. After all, Dr. Suess was a doctor." The sentence just sorta hangs there after Rose says it, but I'm beginning to get her point. Having a title in front of one's name doesn't mean that person has all the answers.
While in the hospital I asked several times how we should dress Gabriel's head. The nurses asked the doctor, and the doctor said it wasn't necessary. Looking back, I guess I knew that was wrong. Every time I read about anencephaly I read about dressing the wound. When I saw pictures of babies that survived for periods of time such as Gabriel has survived, their heads were dressed. It only makes sense that the brain should not be exposed.
When we got home we made the decision not to force Gabriel to wear caps anymore. We thought his time with us may be drawing to a close, and we wanted him to be free and comfortable. And he always has appeared comfortable, still not displaying signs such as fever that would suggest an infection. But as Gabriel continued to not only survive, but fare very well and sometimes even thrive, I began to worry about infection. Our assigned pediatrician, actually a neonatologist working with hospice on our case, said we could dress the wound or not, either way the result would be the same.
I think now about that attitude and it makes me furious. Ben and I are quite aware of what Gabriel's likely fate is. But if dressing or not dressing his head will give him one more day or one more hour even, is it not our responsibility as his parents to ensure he has every moment of life he can? Since then Ben and I have desperately searched the internet for answers to our questions. Luckily, the anencephaly community is small thanks to the internet, and I have received valuable advice from women who have already walked in my shoes. Thanks to them, Gabriel is resting now with a head dressing that seems comfortable to him, and this evening he ate more than he's ever eaten since he's been born.
I am greatful that he was able to resist infection up to this point, as far as I can tell, but I am still angry at our experience in the hospital. What was I thinking, allowing them to let my baby leave the hospital without showing us how to care for his special needs? I am a lawyer; why wasn't I jumping up and down, demanding that Gabriel get assistance and reminding the doctor of HIS responsibility, and how failure to care for Gabriel is negligence. When we left the hospital Gabriel's breathing was steady, and as always his heartbeat was strong. He was alive, and he deserved respect and assistance.
The medical community has come a long way from the days when anencephalic babies were a surprise at birth, when the response to that surprise was to take the baby away to die without even showing him to his mother. But there are still some serious flaws. Gabriel's survival is a surprise, it's true. Maybe no one we have seen knows how to care for a baby as special as him. But that doesn't mean they should just throw their hands in the air with an "Oh well, he's going to die anyway" attitude. We're all going to die, anyway. I bet doctors wouldn't be so happy if we all assumed that attitude and stopped visiting them. I can only guess that it is pride that keeps our doctor from saying "I'm sorry, I don't know how to help you. You should find someone who is better qualified." Pride can be a dangerous thing.
I still have many moments when I question whether I am truly caring for Gabriel to the best of my ability. I feel helpless that I can't give him everything he needs. I hate that so much of what we are doing is an experiment for us. We are giving it all we have, I just wish we had more for him. Every day that he survives I know it is only by God's grace, because God has decided that Gabriel still has things to do on this earth, and I am thankful for that time, and can only continue to do the best I can as we fly by the seat of our pants down this path that we are on.