Baby Faith has passed on

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.

16 Responses

  1. Amen to everything you’ve just said! I was so sad to hear about all that Faith’s mum had to go through receiving hate mail. Who on earth would have guessed that one? I can’t think of anything more despicable than sending hate mail to a mother who gives her child life and loves her unconditionally.

  2. When I heard that people were sending her hate mail, I started to search around to read what people were saying about Myah and Faith — some of the things I won’t repeat because they were obviously a product of sick, twisted minds, but the overwhelming thread that ran through it all was that in order to be a person, one must have a fully functioning brain. There was no question in these people’s minds that Faith was just a collection of organs, and some even postulated the possibility of paying women to surrogate fetuses in which anencephaly was induced in order to farm infant organs. It was so sad to see, and so disheartening to understand what modern times has concluded about human life, that we have all the answers and if something doesn’t fit, we can feel free to discard it. Think about the implications when you begin talking about survivable brain disorders, whether they are genetic or come later in life — how many people out there aren’t really “people” in the minds of these enlightened individuals of the internet?
    I applaud Myah and her efforts to love her baby as much as she could as long as she could… it is obvious now with her reaction to Faith’s death that she was fully aware of the chances of her baby’s survival, not “deluded” like people said she was.

  3. I cannot imagine why folks would send this woman hate mail? The poor woman already had enough heart ache why add insult to injury?

  4. Kathy-I wanted to thank you for posting Faith and Myah’s story. I have been following her blog and several others since then. Praying earnestly for them. And while I am sad that Faith has passed away I know that Myah has blessed so many through her story. I have been blessed by praying for them! And also created awareness for not only this condition but many others.

  5. I know –it’s mind-blowing that some people would go out of their way to make sure that they hurt someone with their words. It’s not enough for them to be hateful in their own little spheres, but they have to intrude on other people’s peace and space. Just to be mean.

  6. I really hope Faith’s doctor writes her up for the medical journals, because she really paved the way for other children with anencephaly.

    It seems like the 100% mortality rate is in part just a self-fulfilling prophecy: they expect the baby to die, so they provide no care, so the baby dies.

    Maybe now other doctors will treat these children like children, not blobs, and more of them will have time to know love.

  7. I had not heard of anencephaly before. I read the Wikipedia article before continuing above, and was chilled by this statement:

    “A baby born with anencephaly is usually blind, deaf, unconscious, and unable to feel pain. … the lack of a functioning cerebrum permanently rules out the possibility of ever gaining consciousness. Reflex actions such as breathing and responses to sound or touch may occur. ”
    Source: http://www.ninds.nih.gov/disorders/anencephaly/anencephaly.htm

    So, you have a breathing infant who responds to sound and touch. Exactly what more do you need to believe this infant might just be concious?

    You were right to relate views on anencephaly to views on infant pain. The rhetoric is chillingly similar.

    • Rini,

      I wonder if the people who write and believe this stuff even read what it is they write: “the baby is deaf… but responds to sound; the baby can’t feel pain, but responds to touch.” What?? Talk about double-speak!

      Faith’s mom has several videos of her on the blog, and she seemed like any normal baby, except for the hat pulled down to her eyes. I wish more people would look at her and see a baby, rather than her deformity.

  8. Little Faith did not feel anything because she had NO brain.
    Her reactions were just organic responses. There’s a plant called Momosa Pudica which reacts in the same way when touched. Would you say it has a brain?

    Faith’s story is a sad one for her mother. She wanted so to believe she had a real baby, but it was just an organic body.

    I don’t know what Myah did after her death, but it would be wonderful if she had given body parts to save other babies.

    • A plant that smiles??? Now *that* would be something to see!

      I’m leaving your comment up just to show my readers the sort of unthinking, unfeeling, unknowing comments that Myah has had to put up with ever since the prenatal diagnosis several months ago. Yours is one of the kinder comments she’s had to endure.

      • Sorry to say that “smiling” in very young babies (ones without anencephaly, no less) is a reflexive action.

        • My mother’s friend called it “talking to angels.”

          But at some point smiling is not just a reflex. And the “reflex reaction” of smiling in young infants seems to be due to being warm and well-fed and comforted; because when babies are not happy, they sure can tell you about it!

  9. i think myah s baby was amazeing the way she responed to her mom was onbelevable sorry she passed away she was a lovely little girl bless her RIP LITTLE FAITH

  10. My nephew was born with anencephaly 9 days ago. As a doctor, I was
    taught and consequently believed that babies with anencephaly were
    unconscious and unresponsive. However, unless you have direct daily
    contact with an anencephalic baby you are in no position to give any
    sort of opinion regarding their functioning or how they should be
    treated. My nephew indicates when he’s hungry, responds to sound
    and touch, and has brought joy to all of his family during the short time
    he is with us.

  11. I’ve read this story and applaud mya’s strength for loving a child she knew would die. I can only believe that she was blessed with this experience more that she would would have by having an abortion, and sparing herself the pain of losing a child so soon.

    Still, there are women who would decide to abort, and those women should not be vilified for their decision.

    If a child cannot be loved, perhaps it is better that they are not born. Some children have a longer life, and a greater chance to be loved. But an ancephalic baby has such a short time….it deserves to be born into a situation that it can be loved.

    I cannot imagine anything worse than for such a child to be born and abandoned. No child deserves that.

  12. Four years later, after following Myah’s blog closely, I still think of her and baby Faith. My sister went through this twice once pre-80’s, and 5 years after. In between she was blessed with a healthy child, quite by miracle. I wish she would have had the opportunity to hold, caress, and dress her babies before they were laid to rest. I wish she would have had pictures taken and all of the celebrations of life that all mothers look forward to. Although I was so sad to read Mayah’s story, I was so glad that she was able to rejoice in her life and grieve in a healthy way when Faith passed. I hope Myah is doing well today!

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