The Internet Told Her to Abort Her Baby Because of Turner Syndrome: Bad Medical Advice.

Turner Syndrome | Cleveland Clinic Children’s

The Internet Told Her to Abort Her Baby Because of Turner Syndrome: Where are the consequences for bad medical advice online for non-doctors?

Two of my recent teaching topics with medical students have been: people taking medical advice from social media and the rise of “wild births,” where babies receive no medical care whatsoever. Then I opened one of my Facebook moms' groups and saw a pregnant woman post that her baby’s genetic screening came back positive for Turner syndrome. Immediately, strangers in the comments started telling her to abort. Not physicians. Not genetic counselors. Not maternal-fetal medicine specialists. Random people on the internet.

What always fascinates me is that when I comment online, I always say “this is not medical advice.” Meanwhile, people with absolutely no medical training give medical advice all day long and, in this case, casually tell a stranger to terminate their pregnancy with zero accountability whatsoever. Where are the consequences for bad medical advice online for non-doctors? Telling a terrified pregnant woman, “Your baby will have a horrible life, abort now,” is medical advice. And potentially devastating medical advice.

What I Explained to the Group (of course, with the disclaimer that this is not medical advice)

In the early 2000s, many schools and science classes performed what were called Barr body studies or sex chromatin studies. Students would swab cells from the inside of their cheeks, stain them, and look under the microscope for “Barr bodies,” which are inactivated X chromosomes. These labs became common because they were cheap, visual, and easy to teach in genetics courses and, in my opinion, a fun way to learn science. Even modern lab manuals and student reports still describe the cheek-swab Barr body exercise. Males would have zero Barr bodies and females would have one. But apparently, that was not always the case.

Sometimes students unexpectedly discovered chromosomal differences. For example, if a female took this test in class and showed zero Barr bodies, it could indicate Turner syndrome. This would suggest that people can live with Turner syndrome and never even realize it. Many people with Turner syndrome live long, functional lives and may not even be diagnosed until adolescence or adulthood, especially in mosaic cases where symptoms are subtle. Is that a disease so severe that it is worth terminating a pregnancy over? Ultimately, it is for the parents to decide, but hopefully not based on suggestions from social media. Side note: similar to finding out one has Turner syndrome, males in their science class with one Barr body sometimes discovered they had Klinefelter syndrome.

The Internet’s Version of Turner Syndrome Is Often Completely Detached from Reality

When people online hear the words “chromosomal abnormality,” many immediately picture catastrophic suffering or incompatibility with life. Reality is much more nuanced. Yes, some pregnancies affected by Turner syndrome can involve serious medical complications. Some fetuses develop conditions such as hydrops fetalis, major cardiac abnormalities, or cystic hygromas. Some pregnancies miscarry naturally. But that is not the entire picture.

Many girls and women with Turner syndrome attend school, have careers, live independently, form relationships, and have meaningful, happy lives. Some are not diagnosed until infertility evaluations or workups for short stature later in life. The condition exists on a spectrum, especially with mosaic Turner syndrome (when only some cells are missing the X chromosome). That nuance completely disappears online.

Social Media Has Created a Culture of Unlicensed Medical Counseling

What disturbed me most was not that people discussed Turner syndrome. It was the certainty. Complete strangers confidently telling a pregnant woman: “I would abort.” Or “You should terminate.” Or “Don’t let the child suffer.”

Imagine making a permanent, irreversible decision because anonymous people online scared you. This is exactly why physicians, genetic counselors, and maternal-fetal medicine specialists exist. A prenatal screening result is not a TikTok debate topic. It requires confirmatory testing, individualized counseling, discussion of prognosis variability, and actual medical expertise.

Also, random people on the internet cannot possibly know what else is going on. It is perhaps possible that a licensed medical professional would propose termination in a Turner Syndrome case, especially if there are other high-risk issues or serious and life-threatening medical concerns. You can't get a full diagnostic picture from a social media post or comment.

I also think that hearing what could be perceived as devastating news, especially if you do not even know what the news means, blocks your ability to take in information. Therefore, when you get hit with this result at your doctor’s office and the doctor starts explaining it to you, you might not fully understand. Later, once you have had time to process, you have questions, but the opportunity to ask the doctor has passed. This is when people take to social media.

This, coupled with the fact that some doctors (especially those faced with constraints set by insurance companies), unfortunately only have a few minutes to explain these very difficult concepts. It can be difficult to get back in with that doctor to continue the conversation. People want to have more than a 5-minute conversation about it, so again, talking about it on social media for hours fills that void.

A Necessary Disclaimer (Because I always have one)

If you previously had an abortion after a diagnosis of Turner syndrome, this post is not intended to shame you or make you feel guilty. People make deeply personal decisions for complicated reasons. My point is something much simpler: do not make irreversible medical decisions because strangers on the internet told you to. Especially strangers who know less about genetics than the average high schooler who had a Barr body lab.

To speak with an actual medical professional who can sit down with you for as long as you need to review your results, book with Dr. Waggel.

References

https://pmc.ncbi.nlm.nih.gov/articles/PMC3746477

https://www.sciencedirect.com/topics/biochemistry-genetics-and-molecular-biology/barr-body

https://www.massgeneral.org/children/turner-syndrome/the-basics-about-mosaic-turner-syndrome