Several weeks ago, I mentioned the blog of a young single mother whose baby had anencephaly. The baby’s name was Faith Hope, and she amazed the doctors and everyone around by living as long as she did — 93 days. Now, her struggles are over. If you want to read more from the mother, and relive the baby’s life as chronicled by her, from the time of the prenatal diagnosis through today (and more may be posted in the future), you can go to the blog and witness through the mother’s words and videos of what a baby with anencephaly is like. It’s quite a different picture from what you may “know” from medicine.
Not too many years ago, they were given the term “anencephalic monsters” and nothing was done for them — if you remember Ina May Gaskin’s Spiritual Midwifery, one of The Farm women had a baby with ancencephaly in the 1970s — baby Ira (his story and others are here) — and they expected the hospital to take care of him as best they could — palliative measures, if nothing else, but were shocked and horrified to find out several days later that they were witholding food and drink from him, and basically letting him die of neglect.
Many people have written hate-filled emails to Faith’s mom, Myah, going out of their way to torment and distress a loving mother, for her decision to love her baby and care for her as best she could, even knowing that her case was terminal. In that, she was no different from any other mother whose child has been given a poor prognosis, whether it’s some form of cancer, a deformed heart, or some other disease or condition that has a high or total lethality rate. Myah had to shut down the comment section of her blog, as well as her facebook account, and have friends check her emails so that she wouldn’t have to see the vile things people said to her and about both her and her baby. Despicable.
It was one such comment that actually was the reason I started thinking about premature babies being operated on without anesthesia back in the 70s and early 80s, which is why I used that as an example in the comment which triggered the stress reaction yesterday. The woman was not cruel (like some of the comments I’ve seen online), but said something like Myah was perhaps hypocritical in her refusal to believe what doctors were telling her about her baby, yet she continued to go to doctors for help when Faith had a problem. So I started thinking, “what do they really know about anencephaly?” I knew, from Baby Ira’s story, how babies with anencephaly were treated, and what they were thought of, in the 70s; and I wondered what research into anencephaly had happened in the past nearly 40 years which might what doctors knew. So, I did a Google Scholar search, and was absolutely flabbergasted by the paucity of research into anencephaly in recent times. Most of the studies were in the 50s, 60s and 70s; and I took a trip back through time, as I saw the multiple papers wondering what caused anencephaly, why there were so many cases of anencephaly, could it be something in the diet, and finally the triumphant paper that announced that too little folic acid was a culprit. It was kinda weird seeing that, because I was thinking, “DUH!” but, it was a big discovery back then. Some of the papers described certain physical characteristics of babies with anencephaly and other neural tube defects, and most of the rest discussed prenatal diagnosis and abortion — but there was nothing that I found that discussed brain function. What few papers there were from the 80s onward also did not address it; and most of the recent ones debated whether or not living anencephalic babies should be declared legally dead so their organs could be harvested. I looked at the titles of 150 different studies, and if they looked promising, I clicked on them. Of course, I was mostly limited to abstracts, but even in that, I could tell that most of the studies were not what I wanted.
I knew that in the 50s and 60s “doctors knew” that babies couldn’t feel pain until a few days after birth at least; and that up into the mid-80s, “doctors knew” that premature infants were not developed enough in the brain to register pain (which is why they felt comfortable operating on them without anesthesia). Now we know both of those assumptions were completely wrong, so you can understand why I wanted research that was more recent than those false assumptions. The assumptions of fetal/preemie/neonatal pain were based on studies of either animal brains or adult human brains, and it was assumed (logically, but perhaps incorrectly) that if this part of the brain does that in an adult, then if this part of the brain is not developed in a baby, then the baby cannot do that (whether the “that” is feel pain, hear, see, etc.). But the problem is that the brain is a fantastically amazing organ, with perhaps more ability to change and adapt than is currently believed. It is possible — and indeed many parents of babies with anencephaly will attest — that although these babies do not have the right parts of the brain intact, that what areas of the brain they do have take over for the functions of the areas of the brain they don’t have. There may be a difference between losing a section of brain and never having that section of brain to start with. Just as people born missing any other body part (like the Thalidomide debacle of the 60s in Europe, with babies born without hands, feet, arms, legs, or with their hands growing where their elbows should be, etc.), or losing a body part early in life, can adapt to their condition perhaps better than someone who is loses a limb in adulthood. I saw a story of a woman who lost both her arms when she was about 3 (she grabbed a major electical wire and burned her arms off), and she learned to do everything she needed with her feet — she even gave her boys a haircut using scissors!! But it’s extremely hard for an adult who loses his right hand to learn to write with his left, much less do more intricate, detailed, or demanding work.
So, I was very disappointed with the lack of research into actually helping these babies, or looking at what they could actually do, rather than just saying, “Nope. Won’t work. And we’ve got heaps of dusty old studies from 50 years ago to prove it.”
Wow, I’ve chased a lot of rabbit trails in this post!
So, long story short — baby Faith lived 3 months, and was loved by her mother every minute of her life. Not only did she live much longer than doctors predicted, but she was able to do more than her doctors expected. Doctors don’t know everything, particularly when the studies are few and far between, and are not particularly up-to-date. Perhaps if such babies were actually studied to see what they really could do, rather than just dogmatically saying, “impossible” and then not trying, then maybe we would find out that mothers aren’t lying or crazy when they say that their anencephalic babies are doing what doctors have prejudicially declared they couldn’t.
I know that the prognosis is not good. Even if such studies are undertaken, I don’t expect babies with anencephaly to live long lives nor develop exactly like normal babies. But surely we can do better than letting them die of neglect or lack of medical care (which is still happening today — many doctors will outright refuse or are hesitant to do small things like give these babies oxygen if they’re having difficulty breathing). Surely we can do better.