An interesting dichotomy

In reading several different things about anencephaly, I found that there was an interesting dichotomy about babies who have anencephaly. Much of this post comes from things I’ve read — birth stories, primarily — and I didn’t necessarily save them to my bookmarks, so I won’t have links for everything.

For background, anencephaly is a type of neural tube defect (which means that taking folic acid prior to getting pregnant and in the first trimester can help reduce the incidence of it) in which the skull does not form above the baby’s eyebrows, and the brain itself does not develop normally. I think there are different degrees of severity with this condition, as there are with most other conditions. Anencephaly is one of the conditions which has a high rate of abortion; of those babies not aborted, slightly less than half are born alive. Of those babies that are born alive, only a tiny minority live longer than ten days, and most die within a few minutes or hours of being born. Officially, these babies, not having any brain other than the brain stem (in most if not all cases), can feel no pain, nor have any thing other than the lowest “vegetative” functions. However, many mothers of babies with anencephaly report that their babies express discomfort when they’re uncomfortable, or will cry if they’re not being held (like many other babies). In one story I read, the mother said that her baby made a funny face when her mouth was wiped with a lemon-scented wet wipe — that it was obvious she was tasting the sour lemon flavor. While most babies die within the first 28 days, there have been cases of babies with anencephaly living many months — one I read of recently in South America in which the baby lived 18 months.

It was odd to me in reading these stories, that many of these babies were born pre-term, while many others went past 42 weeks. One of the post-term births was explained to the mother by the doctor this way: while they aren’t sure what exactly starts labor, they know that there is something with the baby’s brain, and in cases of anencephaly, this chemical that the baby produces to help start labor is not produced at the right time, and labor does not start during the normal time frame. (This doesn’t mean that all post-term babies have something mentally wrong; but there is a higher correlation between babies with problems such as anencephaly or certain genetic conditions that also affect the brain, and post-term births. I look forward to hearing more research into this topic, as they figure out fetal factors that lead to birth starting naturally — maybe it will help to promote the idea of reducing the number of inductions done “just because you’re at 39 weeks”, and instead will wait to make sure the baby is also ready to be born.)

Of the anencephalic babies born pre-term, the reasoning given was that many babies with anencephaly do not swallow, and this leads to too much amniotic fluid. Sometimes this means that the mother gets uncomfortably full of fluid (I read one case in which the mother was given an amniocentesis just to draw off the excess fluid and make her comfortable), and sometimes this even leads to the amniotic sac rupturing. Then, labor ensues, or else labor is induced. It was odd to me that one condition (anencephaly) could lead to either pre-term or post-term birth.

While I’m on the subject of anencephaly, the CDC statistics show that 30% of babies born alive with anencephaly (and subsequently died) were born by C-section. Since most women get an ultrasound at some point in their pregnancy, and anencephaly is likely to be diagnosed, I would assume that these women knew before labor began that their babies had anencephaly. It’s possible that some of the women did not know, and had a C-section when the babies started to have fetal distress during labor (as their skull-less brains could not withstand the contractions). It’s more likely that these women chose a C-section knowing their babies had a lethal condition, but chose surgery to give them the best chance of being born alive. In reading some of the birth stories, several of the women attributed the fact that their babies were born alive to things like doctors not breaking their water artificially, which protected the babies’ fragile brains through the labor and birth process. I’ve also read at least one story of a woman whose baby was diagnosed prenatally as having a lethal condition, and the doctor refused to give her a C-section, because in his mind it didn’t matter whether the baby died during labor or birth, or if he died right after birth. They didn’t put any fetal monitors on her during labor because they “knew” that the baby would die during labor, and didn’t want the mom to be distressed by hearing the fetal heartbeat get slower and finally stop. The baby was born alive, and actually lived several months, before finally succumbing to his birth defect. However, the doctor didn’t think that the benefit of the baby being born alive and only living (as he suspected would happen) a few minutes or a few hours outweighed the risks of the C-section to the mom. Yet as the CDC stats, at least 30% of women had doctors who did not think so. (It was interesting to see the breakdown of vaginal vs. C-section at the various gestational ages — sometimes it was closer to 50/50.)

 

One Response

  1. Hi,

    I found out that the baby I was carrying was an anencephaly at 14 weeks. Terminations are illegal where I am, and if required would have to be carried out in a different country, it would have been against the law to bring back the remains. As I wished to have a place of rest for my baby girl (we called her Emily) I went through the pregnancy up until the 33rd week. It was an extremely harrowing time both physically and emotionally. With every kick and turn you would begin to hope that the diagnosis was wrong. However with every scan and photo the reality would be driven home. From the moment you are informed and accept that nothing will be done or can be done to save your child you start to mourn.

    There was also the additional problem where the part of the brain that controls the swallow reflex was absent. This meant that there was a massive buildup of amniotic fluid in my womb that had to be removed. The procedure is described perfectly on this blog. Family occasions were awful as you start to look at the other kids running around, knowing that your bump won’t be doing the same in a couple of years. People congratulated me on my pregnancy, sometimes you smiled and lied sometimes you couldn’t. Picking out the outfit was emotionally devestating, buying new born nappies because you don’t know how long your baby will live. Trying to find a hat small enough to cover her head. Anencephaly babies heads are smaller in proportion to the rest of their bodies, and are also missing the cranium. We had to make funeral arrangements before the birth which felt like a betrayal. Choosing the time to give birth, was in fact terminating the life of your child, which was based for me on how much longer could I go on, physically as well as emotionally. Perhaps that answers your query on the birth up to 42nd week.

    I must say however, that when I gave birth to Emily it was only when I finally saw her that I knew that she wasn’t meant for this world. I had to go through it all to finally understand. She died during the labour. The option of a C section was denied to me as it was deemed an unnecessary operation. I believe that it depends on how severe the case is that determines how long your child will live after birth, not just the method.

    We held her and buried her on the 2nd day.

    I’m so sorry for your loss. Thank you for sharing your story. — Kathy

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