An American Horror Story: The AHCA and Anencephaly

Photo by David Jackmanson. CC-BY.

Last week I read with incredulity section 215 of the American Health Care Act, the part that states that it “does not include coverage for abortions (other than any abortion necessary to save the life of the mother or any abortion with respect to a pregnancy that is the result of an act of rape or incest).”

How would such a draconian measure, should it become law, affect the field of prenatal diagnosis? For surely in some medical circumstances for some individuals, terminating a pregnancy after learning of a devastating fetal malformation is an appropriate, if tragic, choice – even if the woman’s life is not threatened nor is she a victim of rape or incest. (Here is a map of states that do and do not cover elective abortion under the Affordable Care Act.)

To me, what is threatening is the use of the religious beliefs of some to control the bodies of others. And I suspect that very few of the happy white men celebrating in the Rose Garden last Thursday after their “victory” over women’s bodies are experts in prenatal diagnosis.

In anencephaly, lower brain structures are present (CDC)

A RARE NEURAL TUBE DEFECT

The first scenario that popped into my mind last week: a prenatal diagnosis of anencephaly, a severe type of neural tube defect. NTDs are parts of several syndromes and have genetic and environmental underpinnings. They are not caused by an unhealthy lifestyle, not believing in a certain deity, or belonging to a particular political party – they just happen.

Anencephaly affects only 1206 pregnancies a year in the US. Development derails at day 28 of embryonic development, when tissue running along the back should fold into a tube, then the front swell and form the brain while the tail part specializes into the spinal cord. If this neural tube doesn’t close up on schedule, gaps remain, like a broken zipper. Lower gaps result in spina bifida; the highest gaps, anencephaly.

A fetus with anencephaly develops, but without the forebrain and the cerebrum, the higher brain centers. That means no perception of pain, no consciousness. Lower brain centers, which control vital functions such as breathing, persist, but a good portion of the brain, skull, and scalp are missing. The fetus looks like the Zika kids born with microcephaly, only much worse.

The media tend to use unscientific language, as does the AHCA section 215. For example, Mother decides to carry baby without brain to term to donate organs describes a fetus as a baby, the baby as brainless, and a pregnant women without children as a mother. But semantics are the least of the problems.

A neural tube defect is like a zipper not closing completely.

Parents of anencephalic offspring occasionally make headlines when they decide to carry to term and then harvest and donate the organs of their infant. That’s a very brave and generous choice – emphasis on choice.

I couldn’t stand to be a newborn organ incubator. Yet the AHCA would condemn every woman carrying a fetus known to have anencephaly, or any of more than 1000 other anomalies, to endure the pregnancy to its tragic and inevitable end, unless she could afford to end it sooner than does nature.

It’s difficult to find even Google Scholar articles free from religious undertones or outright judgment, but the results of one study from Brazil provide actual data. It reviews 180 cases: 77 (43%) ended as spontaneous abortions or stillbirths, 50 (28%) of the pregnant women dropped out of care once learning the diagnosis, and of 53 (29%) that were delivered, 33 were alive, and of those, 27 lived fewer than 5 minutes. Development had ceased among those that made it to delivery at 31 to 32 weeks.

Another study reports that 40% of those born alive survive for longer than a day, and of these, 5% make it a week. Googling anencephaly brings up images of the very few who survive longer – they’re difficult to look at.

(NHGRI)

SEEKING PRENATAL CARE

How might the AHCA play out for a woman carrying a fetus doomed by anencephaly and unable to afford prenatal care or an abortion?

Imagine an unplanned pregnancy. A woman, let’s call her June, doesn’t know that taking folic acid supplements, starting before conception, can lower the risk of a neural tube defect. (Planned Parenthood provides excellent information on folic acid supplementation.)

If June doesn’t have an ultrasound to check viability by 8 weeks, a health care practitioner won’t see the failure of the neural tube to close.

If June doesn’t have a blood test for alpha fetoprotein (AFP) level by 13 weeks, her provider won’t recognize the excess that indicates an opening in the neural tube.

If June doesn’t have an ultrasound by 16 to 18 weeks to image organ development and position, no one will realize that the back of the head is missing. Gone. But she will feel the fetus move, thanks to the lower brain structures. She might think all is well. And she may bond with what is within her.

If the fetus stops developing in utero, the health care provider will no longer hear a heartbeat, and the movements will cease. Then ultrasound will confirm what lies ahead.

If none of this care happens, the absence of much of the head will become obvious only at the birth.

A woman can get the prenatal care that would detect a neural tube defect at Planned Parenthood through Medicaid for Pregnant Women. Hopefully donations will continue to fund abortions, which federal funding has never supported.

WE AREN’T GILEAD — YET

How ironic that just last night, I attended a panel discussion at the 92nd Street Y in NYC featuring actresses Elisabeth Moss (aka Offred), Alexis Bledel (aka Ofglen), and director Reed Morano of Hulu’s series The Handmaid’s Tale, the adaptation of the “feminist dystopian” novel by Margaret Atwood. In the US (renamed Gilead) of a dark future ruled by XYs, the few XXs who have working ovaries are ceremoniously raped by men in power and forced to bear their children, many of which are deformed “unbabies” due to the toxic environment. Says main character Offred wistfully of her life a decade earlier, “We had choices then.”

Passage of the AHCA and the language on abortion, even if only in the House, makes Atwood’s imagined America all the more haunting for it’s possibility. The posters from the Women’s March in Washington, “Make Margaret Atwood Fiction Again,” were right on the mark. Planned Parenthood calls the AHCA “the worst legislation for women in a generation.”

A first step to preventing this ultimate misogyny might be to assemble a group of Senators to evaluate the AHCA that includes a few who have uteruses.

FINAL THOUGHTS

I wonder if the smiling and backslapping men in the Rose Garden last Thursday, after approving the bill that many of them didn’t read, know about chromosomal imbalances incompatible with life?

I wonder if the beer-drinking celebrants know about Potter syndrome, which stifles development of kidneys and lungs and would show up on an ultrasound if a woman had prenatal care, such as from a Planned Parenthood clinic? If the fetus survives to become a baby, it soon suffocates.

I wonder how many of the Rose Garden crew know what it feels like to house an active, squirming fetus in one’s own body, and realize the movement has stopped, yet be economically forced to continue on for months, sustaining untold psychological trauma?

It’s fine for legislators to believe that life begins at conception, according to the religion that they choose to follow. It is far from fine for them to control what happens, or doesn’t happen, to another person’s body, especially if they have little knowledge of human prenatal development and what it is like to be pregnant.

So let’s see a little thought, about circumstances and consequences, and yes, actual medical science, behind approving health care legislation.

Source: DNA Science