Sarah Zhang Probes the Dwindling Number of Children Born with Down Syndrome

Sarah ZhangCourtesy of Sarah Zhang

Sarah Zhang

Rapidly advancing technology for genetic testing is allowing doctors to diagnose more and more health conditions before birth. But increasing use of prenatal testing may outpace society’s readiness to handle its ethical and moral implications. What happens, for example, when parents are routinely given the choice of what kind of child they will, or won’t, bring into the world?

This question intrigued Sarah Zhang, staff writer for The Atlantic, who often covers genetics for the magazine. And while exploring this idea, she came across a prime example. Since 2004, Denmark has offered genetic testing for Down syndrome to all pregnant women. Down syndrome arises from an extra copy of chromosome 21 and is commonly associated with some degree of intellectual disability. Most women opt for the screening, and 95 percent of those who receive a prenatal diagnosis of Down syndrome decide to end their pregnancies. As a result, the number of children born with the condition in Denmark has dwindled. In 2019, it was only 18.

At the same time, Denmark offers a strong social safety net for people with Down syndrome, making sure they have access to health care and education. Many parents are outspoken about their joy in raising a child with Down syndrome. And the enduring, almost clichéd image of the condition is one of a cheerful, smiling person.

But this public perception oversimplifies the complex decision these parents must confront. In some cases, people with Down syndrome have serious medical concerns, such as heart defects, gastrointestinal issues, obesity, leukemia, and dementia. Parents are often private about their struggles in caring for a child with the condition. Those who choose to end their pregnancies are understandably even more reluctant to speak out. And yet, as in Denmark, the decision to abort is common in many European countries, as well as in the U.S. “That’s why I wanted this story to be out there,” says Zhang. “It’s strange, right?—the fact that the overwhelming choice is rarely the one you see in public.”

In her story for The Atlantic,The Last Children of Down Syndrome,” published in December 2020, Zhang chronicles how parents navigate these fraught decisions as well as how their individual choices are ultimately shaping society. Here, Zhang tells TON co-founder Jeanne Erdmann how she how she found a fresh way to report on Down syndrome and how she got parents to open up about such an emotionally charged topic. (This interview has been edited for length and clarity.)

 

How did you find this story?

One of the things I think is interesting about genetics is not just the scientific findings but how we as a society make sense of genetics. What does genetics mean to the popular imagination, and why do we take DNA to mean something essential? I’ve reported a lot on how people interpret their genetic results, and how they make sense of their identity from ancestry results.

The Down syndrome piece was an extension of that, because I wanted to explore how we make sense of our identity as parents when we learn what the possibilities for our children are like. Also, a few years ago, we were batting around the idea of a special issue on extinction. Around that time, I’d read a blog post comparing the ideas of diversity, disabilities, and environmental conservation issues, and that stuck in my mind. The special issue never happened but it sparked a lightbulb about how we’re thinking of Down syndrome, because many countries have a high rate of termination for this condition.

Since prenatal genetic testing, especially for Down syndrome, has been around for decades, how did you plan to distinguish your story and make the topic feel fresh?

I was so nervous going into this because of the potential for controversy, and because of how much had been written about Down syndrome already. I wondered what I could possibly do that would add anything. I started out thinking about what I bring to this that hundreds of people who have already written about this didn’t bring. As a journalist who has been covering genetics, I approached it with a long historic lens. Journalists are always covering the newest thing—the first time something happens.

With genetics and prenatal testing, and the genetics of our children, these provoke such elemental questions about who we are, who we want to be, and who we want our children to be. These questions are really big, and they’re theoretical, but we’ve had prenatal screening for 30 years now. I wanted to take a step back and think about what happens when that technology is applied to millions of people, how that has shifted in society, not by looking at the newest thing, but how the past few decades have reshaped how we think about our children when we are in this position.

Why did you decide to set a lot of the story in Denmark?

The obvious answer would be to set the story in the U.S., but here, the coverage for Down syndrome gets subsumed into the politics of abortion, and I really wanted to make clear that this was not just about abortion, but abortion in a very special case. This is different from having an abortion for a child that you didn’t want.

I reached out to the Landsforeningen Downs Syndrom, or the National Down Syndrome Association of Denmark, and I talked to people in several other European countries, as well. But Denmark made the most sense. It’s a progressive country with a strong social safety net. But it has a high termination rate, which was a little bit surprising. Also, their statistics are astoundingly clear, which made telling a story easier, because I could provide numbers for people with a diagnosis, and who had children with Down syndrome, year by year.

How did you identify which sources would be your main characters? For example, Grete Fält-Hansen, who has a son with Down syndrome, is a major focus of the story. 

I ended up talking to Grete who heads the Landsforeningen Downs Syndrom. It was especially interesting speaking to her. She talks to a lot of parents in helping with their decision. They want to know what it’s like to raise a child with Down syndrome. She told me how she did not judge women or tell them what to do.

In some ways, in the story, I am doing a version of what those parents are doing when they call her, which is like, “Hey, tell me about your family, and tell me about these issues that are going on, and basically, open up your life to me.” At times, I think journalism can pit one side against the other. Because Grete thought about this in such a complex way, and was so open with me, I could write a richer story centered around her.

What about the parents? How did you find people who were willing to talk to you about such a sensitive issue, and how did you build enough trust to ask difficult questions?

Early on, I asked people to tell me their life story. I got to know them and their kids as people first. I wanted them comfortable before trying to ask difficult questions with controversial answers.

I found a lot of parents through Grete. She put me in touch with Louise Aarsø, mother of Elea [who is photographed in the story], and the other people who appear in the piece. I also asked people I interviewed who else I should be talking to.

Before I went over, I had long phone calls with people in Denmark. I needed to understand their family dynamic, so I took my time. Early on, I asked people to tell me their life story: where they were from, what they do for a living, when they thought of having children, what their birth story was like. I got to know them and their kids as people first. I wanted them comfortable before trying to ask difficult questions with controversial answers.

You also attended a meeting of the local Copenhagen Down syndrome group, which became an important part of the story. How did that work? Were parents willing to open up?

I came in after their official meeting, when they were sitting around and chatting. Some were nervous about their English. I think in some ways the presence of an outsider was a catalyst for a conversation [about] things they might not have talked about or had a reason to talk about. I was asking questions and was sparking things they were thinking about but may not have had a chance to openly discuss.

Obviously, there are a lot of families who want to talk about their child with Down syndrome and why they are so happy and glad they had a child with Down syndrome. But there are also people who are struggling and people who decide to have an abortion, and those voices usually don’t get included because people don’t want to talk about it publicly, for very understandable reasons.

At the meeting in Copenhagen, one woman told me she was really struggling and wished she’d had an abortion. I also talked to one woman who’d had an abortion, and she was eager to talk. She was looking for people who’d made the same decision, because she knew that she wasn’t alone. In Denmark, 95 percent of women in this situation ended up choosing abortion, but she wasn’t finding anyone willing to talk about it, and that’s why she wanted to talk to me. People who agree to talk to journalists often do so because they have a perspective they want to share, a view to get across. And sometimes that forces you to change what you thought before you did the reporting. That’s why I wanted this story to be out there. It’s strange, right?—the fact that the overwhelming choice is rarely the one you see in public.

How did you deal with the language barrier?

The language barrier and the culture barrier were definitely an issue. All of the parents in Denmark spoke very good English, but the kids didn’t, so it was a little harder to communicate, and that added some complication to the actual reporting. I think what really comes across is how much communication is not verbal; it’s your facial expressions, and how you react.

That observation seems strikingly true in the scene where Karl Emil, Grete’s son with Down syndrome, looks at her phone, only to see that she’d retrieved a documentary called “Death to Down Syndrome.” You write that when Karl Emil saw the screen, “his face crumpled. He curled into the corner and refused to look at us.”

I’ve thought about that moment a lot. When Karl Emil saw the title on Grete’s phone, his face dropped. I asked him, through his mom, what he thought of prenatal screening and he shook his head and murmured to her. Grete said, “He doesn’t like it.” But his immediate reaction was also so powerful and reinforced how much of communication is nonverbal.

Since you were right there, seeing Karl Emil so visibly upset, was it difficult for you to keep the interview going?

Absolutely. At that point I kept asking questions, but bringing up this topic was clearly upsetting him. I think he got his point across. As a journalist, you don’t want to upset the people you are talking to, but sometimes there are situations where you have to ask questions that upset them. I think in this case it was an especially odd situation, because I wasn’t asking questions directly to Karl Emil, I was asking questions for his mother to translate. After I saw him react, I felt like asking him any more questions about that topic would keep upsetting him, so we moved on.

As in this scene with Grete and Karl Emil, you are clearly present in the story. In some cases, you even share your own journey of asking questions and wrestling with this complex topic. What led to your decision to include yourself in the story in this way, and what did you hope to accomplish with that?

When you are writing a feature, showing how you are reacting to something happening is a way to make the scene seem more real, and to develop the larger ideas that you are trying to get across.

When you are writing a feature, showing how you are reacting to something happening is a way to make the scene seem more real, and to develop the larger ideas that you are trying to get across. There were moments where it was important for me to react to what was happening in a scene, like with Karl Emil. I am obviously not just a blank transcriber; I am also in the scene and watching something emotionally powerful unfold. Adding my reaction can also be a useful bridge between sections for readers to follow through what’s going on in my head.

I originally wrote a little bit more of me into the story, and then it got edited out. I wrote more about my personal feelings, not about the topic but about motherhood, and I think it was important for me to process them. But my editor and I ended up feeling it wasn’t necessary for the story.

You had so much rich material. How did you decide what to include or omit?

When I was struggling, I focused on material that I could not stop thinking about—things that stuck with me personally. The time with Karl Emil, and conversations with the anthropologists. When I thought of the story, those were the first things that came to mind as obvious things to include.

What became harder was how much of the story is about how parents make decisions, and how much is about what living with Down syndrome is like in terms of jobs or school, and how things have changed over the past few decades. I think we still have all of that, but I included more of that originally. I realized that some of this was a whole story in itself, and I couldn’t go into all of it.

This story tackled a wide range of issues, from intensely personal decisions of individual families to big trends in how society thinks about disability. Can you walk me through how you decided to structure this complex story?

I knew that I wanted to begin with a scene where parents are asking Grete what it is like to raise a child with Down syndrome, because that is, in some ways, what I was doing, and what I felt like readers may be doing to familiarize themselves with this topic. And I knew I wanted to end on Karl Emil, because as I was writing, I felt like I was taking long detours, talking about what women were thinking and how women were making these decisions. In the end, the question is the very human face of whether people like Karl Emil are born. Ending on him provided something clear and concrete in the reader’s mind.

In between, I introduced a new idea in each section, and made those ideas get a little bit bigger and bigger. I wanted to give readers an emotional journey throughout the piece, rather than a linear journey. Instead of having readers, for example, be horrified all the way through, I wanted a little back and forth, where in one section you might feel, Oh, this is a really terrible thing happening, but other times you might feel that women should have their choice. I chose this approach because I don’t have clear answers to where the balance should be. Maybe having gone on this journey through the piece might give readers better questions to ask themselves.

What else did you hope people would come away with after reading this story?

I came into this knowing I had a lot of thoughts about this topic, but they weren’t very coherent. My goal was to give people some ways of thinking about this, because even if we might not have gone through or thought about these decisions, they have social ramifications, and they take place in a larger social context, where there’s lots of pressures on women, and so many expectations of women and motherhood.

I wanted to map that landscape of what things go into the choice of whether to abort, and show how those pressures come to bear on the situation, so you have a better understanding of all of the forces that act on a single choice, even though every experience and choice is unique.

Was there any part of your writing or reporting you were particularly worried about or found especially challenging?

I tried not to be deliberately provocative—that weighed most on my mind. I didn’t come at this as wanting to judge anyone for doing one thing or another.

Writing about Down syndrome is difficult, because there’s a wide spectrum of severity. You either have this cliché, [a] happy kid with Down syndrome, [or] on the other side, you have a scary-sounding medical condition. The reality is usually somewhere in between.

Because this was such an emotionally charged topic, and because the story is partly about abortion, I was cognizant of how readers might react instinctually to people in the story who’d had an abortion. Everyone who takes the leap of talking about their personal lives, especially on something so controversial and heated, takes a risk. I wanted to make sure I didn’t do anything to somehow upend their lives.

You do strike this delicate balance of writing sensitively about abortion while also still clearly presenting harsh statistics. Do you have any advice for journalists handling similarly controversial and sensitive topics?

This was the hardest part of writing this story. I assumed that many people reading this would immediately feel very strongly one way or the other, and how do you keep those people reading? Also, how do you then write a story that engages with complexity, and keeps people unsure of what they think, and how do you keep them reading as well?

I tried not to be deliberately provocative—that weighed most on my mind. I didn’t come at this as wanting to judge anyone for doing one thing or another. It helped that Grete was also someone who didn’t want to do that. I could have chosen a person who had strident views about what to do. Even if the rest of the piece itself was sensitive to all of the concerns, having a more strident person as a protagonist would have pushed readers to one side or another. That was a big part of it, but it was just luck that Grete was so open in her thinking about this.

Did this story take an emotional toll on you? And, if so, how did you cope?

Yeah, for sure. Just the reporting and nuts and bolts of writing was one of the more challenging stories I’ve worked on. It was a hard story to structure. And the other part was these two- or three- hour-long conversations with parents were emotionally taxing. After the calls, I would sit and breathe and take a break before I could go on to the next thing.

I was working on this story on and off for a year, but I was also obviously doing other things in between. I was doing a lot of writing about COVID, and then I would have these long conversations with parents. It was really a strange experience to go back and forth on this emotionally charged piece, and then writing about the pandemic was also anxiety-producing in a different way. I took walks outside—just basic stuff.

How did readers ultimately respond to the story?

On the whole, I was pleasantly surprised at how many people said that they felt challenged by this story and were grateful for that. Also, some readers brought up important things that I did not put into the piece. I got several letters from people who, in the course of deciding what to do, had wondered what would happen to their child with Down syndrome when they, the parents, passed away. I included women who told me this, too, in earlier drafts, which got condensed, as they tend to do in the editing process. But I do wish I had kept that because it encapsulates how individual decisions are constrained by the structure of society. No matter how many words you write, there will be more facets to it.

 

 

Jeanne ErdmannCarl Erdmann

Jeanne Erdmann

TON cofounder and editor-at-large Jeanne Erdmann is an award-winning freelance health-and-science writer based in Missouri. Her writing has been published in Nature MedicineNatureWomen’s HealthDiscoverThe Washington PostSlateAeon, and elsewhere. She is on the board of the Association of Health Care Journalists. Follow her on Twitter @jeanne_erdmann.

 

Comments are closed.