Reporter's Notebook

The doctor came in and told me that the ultrasound was very abnormal, that there was a huge amount of swelling and it was likely that there was something very wrong. We moved forward with genetic testing and found out within a week that the problem was Turner Syndrome, where there is a missing X chromosome.  

I learned about this quickly and found that some women with Turner Syndrome have “mosaic” disease, with a mix of abnormal and normal cells, and they can live fairly normal lives other than some physical differences that include not being able to have children. My fetus, however, did not have mosaic disease and did have tremendous swelling that meant there were serious heart or kidney problems. No one could be certain, but it was very likely that she would die inside my body by about 24 weeks of pregnancy.

I couldn’t imagine how terrible it would have been to continue the pregnancy waiting for her to die inside me. My husband and I made the difficult decision to end the pregnancy immediately.  

Some of my co-workers who knew what was going on prepared their schedules to cover me when I called in “sick” the day of the abortion procedure. I was very grateful that my obstetrician was able to perform the abortion, even though it was very difficult that this pregnancy was ending in this way.  

Within three years after that pregnancy, I had two more pregnancies and now have two healthy children.

If people are worried about sex-selective (or other kinds of selective—race, disability, etc.) abortion in America, maybe they should concentrate on how our society devalues women, people of color, and the disabled, and ask what forces might cause someone to make that choice in the first place. The fact that someone would abort an otherwise wanted pregnancy on these bases is a result of the inherent sexism, racism, and other prejudices in our society. Deal with the cause instead of obstructing women’s access to necessary healthcare.

Another reader tries to imagine a scenario in which banning sex-selective abortion would be beneficial to society at large:

Abortion is legal in the U.S. on the premise that a woman cannot be forced to carry a pregnancy during the first trimester because her choice (under her right to privacy) to NOT be pregnant outweighs any interest the state has in regulating her reproduction. Given that it denies a first-trimester fetus the most basic human right possible (the right to life), Roe v Wade thus strongly implies that the fetus has no enforceable rights during the first trimester. That being the case, it’s hard to see how any particular fetus can have a Constitutional right to not be being aborted based on its particular characteristics.   

Thus, regulation of selective abortion would have to be based on some compelling state interest other than the rights of an individual fetus. I can imagine such a case against sex-selective abortion: a balance of the sexes being a highly desirable trait of a stable society. It’s a bit of stretch, and extremely difficult to enforce, but imaginable.

It’s less of a stretch for countries such as China and India—and Pakistan; here’s a 2012 Atlantic post from Habiba Nosheen and Hilke Schellman entitled “Abandoned, Aborted, or Left for Dead: These Are the Vanishing Girls of Pakistan.”

The part I find unutterably cruel about banning abortions based on genetic defects is that it includes the recessive inheritable diseases, many of which are worse than you can imagine. (Down Syndrome is a trisomy, so it isn’t a family trait; a family that has one child with Down Syndrome probably won’t have siblings with Down Syndrome.) Parents who carry the matching recessive genes have a 25% chance of those with every pregnancy; they are often diagnosed with the first sick child.  

I am a genetic carrier for hydrocephalus, gene unknown. My first son was diagnosed at 30 weeks, when an ultrasound showed a head that was much larger than full term and held a paper-thin film of brain lining the skull. The rest showed as empty blackness, full of fluid.

We choose a late-term abortion of a child we loved desperately and still miss. But his life would have been hospitals and pain, unknown life expectancy and who knows what level of perception and participation from him.

My second son had hydrocephalus as well. We lost him too. We mourn on their death days and birth days. My third son, now a toddler, has been healthy and returned joy to our lives after three black years.

Honestly, I am comparatively lucky. There is a women on a genetic carrier forum who found out she carries the SMA gene by watching her daughter die at nine months old, starved, unable to swallow as she lost muscle tone. She knows she would never put another child through that.  

Another woman on the forum carries Walker-Warburg. Her first son, born when she was 19, died at a year-and-a-half. Her second son, born when she was 23, died at one year. Her third son, conceived when she was 26, also carried Walker-Warburg. Would you force her to carry him to term, tend him for a year and watch him die? This legislation in Indiana does.  

We have a woman whose first child has cystic fibrosis. They are fine and managing it, but she doesn’t want a second child with cystic fibrosis because she is worried about cross-infections and she can’t care this intensively for two sick children.

These are parents who know what they are facing, often learning it from the slow death of their first child. They know exactly what the diagnosis means. They have all the love any parent does; for most, that means sparing their next child. Even the spectacularly cruel rationalization that “everything happens for a reason” and finding silver linings in the love for their child doesn’t explain having to repeat such pain.

I think it is important to declare honestly that I matter too. I did not want to be who I would have been if we had had our first two sons. From the very beginning, I could not have borne them. Their heads were too large, skulls bulging with fluid. We would have both died in a vaginal delivery. I did not want a c-section—major abdominal surgery—to have babies who likely would not live long.

Had they lived, I did not want to be a hospital mom. I didn’t want to spend weeks in the hospital, know the best parking lots and nurses, watch the babies have recurring infections, want to cuddle them through their tubes. I didn’t want that. I didn’t want to spend my life at appointments, scheduling therapists, chasing diagnoses, and holding him while he has blood drawn. Their father and I both have jobs that we like and find interesting; neither wanted to quit and fill our minds with the details of medical care and syndromes. This is all while our sons are young and cute and we can be their primary caregivers. If they had lived long lives, I didn’t want their care to fall on others in our families.

I will miss my boys until I die. But I would rather be the mother with that grief than be the parent who was mentally and physically and financially absorbed into their hydrocephalus. My future wasn’t my top consideration, but it isn’t irrelevant either. I am also a person in our family and my quality of life is also part of the decision.

Finally, the birth of our healthy third son has proved to me that we were right: Each delightful thing he does, every normal healthy milestone, is wonderful. That is an important part of what we yearned for when we yearned for children. We spend time with our son on bicycles and in parks, not long drives in a car seat he hates to a different specialist, or hospitals getting a new shunt.

My now-four year immersion in the world of genetic carriers has taught me that these parents love their children, healthy, sick and dead, with everything they’ve got. They make these decisions based on what they know of the illness, of themselves and the baby’s siblings. They crave families with healthy children. If they can afford it, they use every technology they can find to help them. (I deeply despise the phrase “designer children.” Fuck eye color, when genetic technology can’t even give me children with whole brains.)  

Many times, all of their thought and love leads them to abort fetuses that they want very much, knowing what lies ahead for those babies when they leave the warmth and support of the womb. They are incredibly brave parents. It is deeply wrong for anyone else to interfere in that decision.

Usually people justify abortion on the grounds of “genetic defects” by saying that the baby would have a horrible life anyway, but let’s talk about Down syndrome. Over 90% of babies with that condition in this country are never given a chance at life. People with Down syndrome are not vegetables. Their average life expectancy is 60 years. By all accounts they bring love and joy into the lives of those around them. Some are even able to hold down jobs and apartments.

I support keeping abortion legal at least early in development, and I also don’t mean to downplay the hardships of parents raising children with Down syndrome, which is a lifelong and arduous task. But a 90% abortion rate, even though it’s not literal eugenics (which would imply an organized effort rather than a set of individual decisions), is functionally equivalent. Pointing that out is not “getting into the weeds” [as Terri put it].

Another reader adds:

Taking care of children with genetic abnormalities is incredibly expensive (we’re talking on the order of millions of, typically, tax-payer funded medical services over a life time), incredibly difficult on the parents, incredibly difficult on the marriage, and the child’s quality of life is sub-par at best. So, while I would say we probably should prohibit abortion based on sex, lest we end up with a world full of males, abortion based on virtually any other reason is more than acceptable. It is the woman’s choice whether she has a child, not anyone else’s.

Have you ever had to confront that choice—to abort or keep a fetus with Down Syndrome? If you’d like to share your experience, in an anonymous space, please let us know.

They have laws against sex-selective abortion in a few countries, but it’s pretty much unenforceable, because people will just lie about why they’re having an abortion. The only way would be to ban ultrasounds and pre-natal testing so parents are in dark about the sex or potential health problems of the fetus. That is probably what Indiana wishes to do but can’t.

Of course, in America it’s a non-starter because it directly contradicts Roe v Wade and the criteria therein. It’s also a “solution” in search of a problem. Sex-selective abortion isn’t a problem in America and gender-ratios aren’t being skewed.

Statistics for sex-selective abortions in the U.S. are hard to come by, but there is some evidence backing the reader’s claim that “gender-ratios aren’t being skewed.” The link Emma used for asserting that “it’s almost always female fetuses” leads to a report that doesn’t include figures from the U.S., “only numbers from societies where the problem is widespread,” as the authors put it. For more perspective on sex-selective abortions among Americans, Sujatha Jesudason and Anat Shenker-Osorio wrote a 2012 piece for RH Reality Check that was featured on our site:

The extent of sex-selective practices in the U.S. is hard to assess, since it’s rarely something people will admit to doing. But we can make an educated guess by observing alterations in expected sex ratios. If nature has its way, women will likely give birth to 100 girls for every 102 to 106 boys (for a ratio of 1.02 to 1.06 boys per girl). And among first-time parents in the U.S., that's exactly what we see.

However, as birth order rises, apparently so does selection -- at least, in certain ethnic groups. With 2000 U.S. Census data, researchers investigating Korean, Chinese, and Indian communities found that, after having one girl, parents have as many as 1.17 boys per girl when their next child is born. With two girls at home, the ratio goes up to 1.51 boys per girl for the third child (meaning 151 boys are born for each 100 girls). These skewed ratios aren’t present among other ethnic groups in America.