The Spectrum of Down Syndrome

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

Following my callout for stories from expectant parents confronting a Down Syndrome diagnosis, a reader steps forward:

My wife and I discovered early in her second pregnancy that the fetus had Down Syndrome, and we elected to abort. It was a difficult decision, but I will always fight to make sure others in our situation are permitted the same choices we had.

I believe that people tend to overlook the complexity of this tragic question and forget that everyone’s situation is unique. (Our first child was already diagnosed with a genetic disorder, and we were not sure we had the resources to care for two special needs children.) Furthermore, there’s a tendency to see Down Syndrome births as occurring in a vacuum—a single potential life whose existence is predicated on an abortion decision. Three months later (well before the expected delivery date of the terminated pregnancy) we were expecting once again, and had a healthy baby girl. Is her existence a violation of some higher power’s plan?

“Everyone’s situation is unique” carries the same meaning as “It’s So Personal,” the name of an Atlantic/Dish reader series on late-term abortions that I edited back in 2009. (It was prompted by my former colleague Andrew Sullivan’s reaction to the assassination of abortionist George Tiller.) Those personal stories center on genetic abnormalities more severe than Down Syndrome, but, as this second reader explains, that line is often blurrier than I assume:

Parents who abort because of Down Syndrome get singularly called out in these discussions and that is a real shame. They already live with the pain of not knowing where their baby would have fallen on the spectrum of health for Down Syndrome. Children with the syndrome have a wide variety of health outcomes, from death in utero to potentially long lives. Some live short lives full of pain. Some live long healthy lives. A parent can’t know which the child will have in advance.

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.