Where are the first-person stories on abortion in this scenario?

June 18, 2020 11:06 AM

“An estimated 92 percent of all women who receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancies, according to research reviewed by Dr. Brian Skotko, a pediatric geneticist at Children's Hospital Boston.” However when I went looking for women sharing their first person accounts of getting an abortion in this scenario, I found one (via Shout Your Abortion). Where are the first person accounts?

I found lots of articles from women who got a prenatal diagnosis of Down Syndrome and chose to keep the baby. I also found a few op eds where women said they would get an abortion (hypothetically) in such a case. Some things to note:
- I know no one is obligated to share their abortion story, but I was surprised by the radio silence on this
- I absolutely support a woman’s right to choose to continue a pregnancy in any circumstances, but I am surprised, given the 92% stat above that these stories dominate.
- I know abortion in this scenario is very controversial. I recognize that many people fear abortion is being used to eradicate people with Down Syndrome and other chromosomal differences. I respect the work of advocates (both people with chromosomal differences and their allies) to bring this debate to the forefront of our minds. I am just also interested in hearing the first person accounts of women exercising their right to choose.

posted by anonymous to Health & Fitness (8 answers total)

[Apologies, I misread your question and posted a site that collected first person stories of people having abortions - nothing related Down's Syndrome in particular.]
posted by MiraK at 11:18 AM on June 18, 2020

The Atlantic collected personal stories of abortion; this one and this one discuss a Down diagnosis.
posted by Mr.Know-it-some at 11:22 AM on June 18, 2020 [1 favorite]

You might want to look for terminations for medical reasons, usually going by the acronym TFMR. Although not specific to Down syndrome, I've seen a number of stories shared on parenting forums of these and I assume that given that stats at least a proportion of the women who chose TFMR did so following a prenatal Down syndrome diagnosis.
posted by plonkee at 12:04 PM on June 18, 2020

+1 to TMFR. There are lots of medical reasons, of course, but people who would choose to terminate for a rarer genetic illness would also probably terminate for a chromosomal abnormality like Down's.

(I did cell-free DNA test at 11 weeks with my pregnancy and was absolutely prepared to terminate given my higher risk factors and relative poverty of resources. I didn't have to, and I'm so grateful because it would have been the saddest experience I can imagine, but would have is not the same as did and I know that.)
posted by epanalepsis at 12:11 PM on June 18, 2020 [3 favorites]

Mod note: This is an answer from an anonymous commenter.

You have already hit upon the reason you don’t see more of these stories, of people who choose to terminate after prenatal testing that’s positive for Down Syndrome: “I know abortion in this scenario is very controversial.” That’s why. There is incredible stigma even among people who are pro-choice in other circumstances.

I have heard many, many pro-choice people idly and blithely proclaiming that although they support a pregnant person’s right to choose if someone terminated because of a lethal or painful fetal anomaly, they do not support abortion after a prenatal diagnosis of Down Syndrome. I’ve also heard and read comments from pro-choice people who support the choice of abortion in circumstances where the pregnant person simply doesn’t want to be pregnant, but not in the case of a prenatal diagnosis of Down Syndrome because they feel it is discriminatory. And these are comments from people who are *pro-choice.* Obviously anti-choice people are opposed to any abortion in most circumstances, and make similar comments, but the anti-choicers tends to be vitriolic, threatening, and hateful on top of judgmental. All I can say is, it’s impossible to really know what choice you’ll make until you are in that situation.

After my abortion following a prenatal diagnosis for Down Syndrome, I joined a parenting forum discussion group specifically for termination for medical reasons. This group, in turn, has a thread specifically for people who have chosen/are considering choosing to terminate because of Down Syndrome. When I was emotionally ready, I shared my story in that thread. I checked it recently and there are nearly 2000 comments between the two threads on this topic, so...this is indeed a common reason to choose TFMR. In these threads, I saw many instances where posters from other parts of the site would come in and tell people they were cruel and wrong for choosing abortion in the face of a Down Syndrome diagnosis. Some would send harassing private messages to the people who had not yet had their abortion, trying to shame them into cancelling their appointment.

But you have expressed interest in hearing abortion stories from people who terminated for Down Syndrome, so I will tell you mine.

I tried to become pregnant for many years, to no avail. There were medical interventions. No one could say what the problem was for sure. I was an older mother when I finally, to my shock, became pregnant. My partner and I were thrilled, though I was worried about miscarriage. We told people around the 3 month mark. We chose to do prenatal testing because we had agreed before even trying to conceive all those years ago that we would like to know and that termination was on the table depending on what the diagnosis was. An ultrasound turned up some markers that were possible indicators of health problems related to T21 (Trisomy 21, the medical term for Down Syndrome), or another chromosomal anomaly. The doctors, who were excellent and compassionate, gave us information on the possible chromosomal conditions it could be, told us about all the options available if there was indeed a problem (carry to term, terminate the pregnancy) and encouraged us to get a confirmed diagnosis with amniocentesis—which comes with its own risks of miscarriage.

We did choose to have amniocentesis, and a genetic counsellor met with us afterwards to explain in more detail what the range of outcomes was for each of the possible trisomies: T21 (Down Syndrome), T18 (Edwards Syndrome) and T13 (Patau Syndrome). By far the one with the widest range of outcomes is Down Syndrome. The genetic counsellor was warm and compassionate, understanding of our stress and anxiety, but also factual and nonjudgmental—there was no encouragement to either terminate or not terminate. She provided a lot of information, including that children with Down Syndrome can have a range of outcomes that affect quality of life, with some having very few if any physical health problems, and others with severe problems with their hearts or multiple major organs. She said some children would be verbal, able to read, and able to do most activities of daily life independently, while others would be nonverbal, with severe cognitive issues that meant they would be at the developmental stage of a newborn infant their whole life. People with Down Syndrome are also more likely than those in the general population to develop dementia, and more likely to develop it at a younger age. The important thing for us to know, she said, is that while it’s possible to anticipate some physical issues before birth (it turned out our baby did have some of these indicators for organ failure, specifically the heart), it’s not possible to know whether the baby’s cognitive capacity would be that of an infant or higher. From what she said, we understood that if the prenatal diagnosis was Down Syndrome, it would be a total roll of the dice as to what quality of life our child would have.

The results confirmed that the baby did have a chromosomal anomaly and it was T21. Given what we had learned during our research and from the genetic counsellor, we chose to terminate the pregnancy. Because of the length of time testing had taken, I was well into my second trimester, and geographical access issues meant I was pretty far along by the time I was able to begin the process at the one hospital in my region that does late term pregnancies.

Emotionally, it was a horrible experience. However, the care I received was stellar. No one on the medical team judged me; I was treated like anyone who was undergoing a traumatic pregnancy loss, which to my mind I was. Like with any traumatic pregnancy loss, especially one that is not followed by a living child, I have been permanently changed. Epanalepsis’ comment rings true: it has been the hardest and saddest experience of my life to date. I wouldn’t wish it on anyone.

I never was able to have a living child, and I regret that I’m not a mother. But I do not regret having tested and terminated my pregnancy after a prenatal diagnosis of Down Syndrome. For reasons that by now are probably quite clear to you, I rarely tell people even that I terminated a pregnancy for medical reasons—most people who were not close family or friends who knew I was pregnant were just told we had lost the baby because of a fetal anomaly, but not that we had initiated termination. Even for people who knew we had terminated for medical reasons, we rarely disclosed exactly what the diagnosis was. Even telling you this, anonymously, I feel like I need to state that I fully support the rights of people to carry any pregnancy to term. I support lifelong care, with dignity, for any person with a disability. I don’t think society does enough to support parents who do choose to carry a pregnancy to term when the baby has a disability, nor to care for and respect people with disabilities. But I am grateful to have had the prenatal diagnosis and the ability to choose to terminate my pregnancy, because that was what was right for my family.

posted by cortex (staff) at 2:59 PM on June 18, 2020 [78 favorites]

If you use the search terms “TFMR” and “T21” you can find several first person accounts on reddit. For example, this post and this comment. The thread the comment is from has some first person accounts of terminations for other reasons - mostly T18. I’m sure you can find more first person accounts on reddit, but I don’t have the emotional bandwidth to look through and find them right now.
posted by insectosaurus at 4:27 PM on June 18, 2020

Followup from the anonymous asker:

Thank you to everyone who has commented so far and especially to the person who shared their own story here. It meant a lot to me. As you may have surmised, this week I terminated a much wanted pregnancy because we had a confirmed diagnosis of Down Syndrome. I really needed to hear from other people who had been there. Because of the search terms you all have provided, as well as generously sharing your own story, I have found some peace today. Thank you all so much. I understand that this may be a very triggering topic for people who have relevant comments to share, so I wanted to provide an update that I have what I need at this point so no one else has to look into this any further. Thank you, again. You really helped me.

posted by LobsterMitten at 5:03 PM on June 18, 2020 [44 favorites]

Here's one. http://www.shakesville.com/2012/10/an-open-letter-to-congressman-paul-ryan.html?m=1
posted by shadygrove at 8:17 PM on June 18, 2020