'The Most Gut-Wrenching Decision I Ever Made'

Editor’s Note: This article previously appeared in a different format as part of The Atlantic’s Notes section, retired in 2021.

A reader shifts our debate over sex-selective abortion into this broader series on personal abortion stories:

Regarding your discussion about abortion based on disability, the conversation needs to move beyond Down’s syndrome. While Down’s is relatable to many people, parents are getting the awful news (usually at 18-20 weeks, when they've already announced and are eagerly anticipating their much-wanted child) that their child has half a heart, no brain, organs missing, organs outside the body, extra chromosomes, not enough chromosomes … on and on and on. There are SO MANY things that can go wrong, and so many family circumstances that factor into the decision. Removing the ability for the doctor and patient to converse freely is simply punitive to families already in a difficult situation.  

I don’t blame people for not understanding; I had no idea until my doctor came into my ultrasound (at 22 weeks), put her hand on my knee, and said, “Something doesn’t look quite right, and I’m going to send you to a specialist.”

This next reader gets into much more detail about the severe complications of her pregnancy:

At the outset, I ask that you please withhold my name because only a few friends and family members know this story. I have never had to consider having an abortion because of my baby having a Down Syndrome diagnosis, but my husband and I did face this decision a couple of years ago during our 20-week ultrasound when our baby was diagnosed with something called hypoplastic left heart syndrome.

This is a heart defect where the left side of the heart is severely underdeveloped.  Up until about 30 years ago, this was a death sentence for a baby. Babies with this condition generally died within a few days of being born.

However, in the early- to mid-’80s, some pediatric surgeons developed a series of three operations that are performed within the first couple of years of a baby’s life to help the heart muscle pump blood properly. These surgeries are just a stop-gap, though. Your baby still needs to be on the heart transplant list. Moreover, there is very little data on the quality of life of children with this condition, and many of these children have other developmental problems, including intellectual disabilities.

HLHS is not Down Syndrome, of course, but it is a syndrome where your child could have a decent life provided there is extensive intervention to make it so. In my case, though, our baby had other heart defects in addition to HLHS that would have necessitated surgery while she was in utero in order for her to even qualify for these HLHS surgeries.

After shedding many tears over this very-much-wanted baby, we decided to end the pregnancy. We have another child, and we would have had to spend most of our time in a hospital once the new baby was born, which would have short-changed him significantly. We both work and make decent money, but something like this could have bankrupted us and probably would have led to at least one of us losing our jobs because of how time-consuming this process would have been. Our medical insurance is good but probably not that good. It’s also through a small business, and the premiums for everyone at my company probably would’ve shot through the roof had we brought this baby into the world.

Most importantly, though, we just could not foresee this child having a decent quality of life or living very long. This is the most gut-wrenching decision I have ever made in my life, but it was the right decision for my family and we have no regrets.

I would like to think that I would keep a baby who had a Down Syndrome diagnosis because I know they can have a decent quality of life. However, given how difficult it is to raise such a child, I cannot begrudge a parent for making the decision not to do it.  

And now here is where I get on my soapbox about abortion. Becoming a mother and in particular, going through this experience of being pregnant with a baby who had congenital defects, has made me ardently pro-choice. Being a parent is wonderful, but it is also expensive, time-consuming, and physically and emotionally draining. If you do not have the financial or emotional resources to handle it, then you should not be forced into it. That is especially true for children with severe congenital defects.

Our country is not very kind to families, and we have one political party where many members of it want to turn our country into some kind of libertarian economic paradise that offers even less government support for families than we currently have. This same party is also hell-bent on making it impossible for women to have safe abortions. You cannot have it both ways. If you want that libertarian economic paradise where it is every man for himself, then you better have abortion on demand. If you want to end access to safe, legal abortion, then you better offer a huge panoply of government programs that make it easier to raise children.