The freedom of not wanting kids

Plus, the dubious assumption that all women with complex hearts want to get pregnant.

My child-free state has always felt like freedom. Photo by Dino Reichmuth on Unsplash

Hello! I’m Leigh Kamping-Carder, and this is The Heart Dialogues, the newsletter for people born with heart conditions (and the people who love them). Every other week, I bring you a candid conversation with someone who has congenital heart disease, plus essays, links, recommendations, reader threads and other good stuff about living with a wonky heart. Join this community and ensure you don’t miss the next edition.

This essay deals with pregnancy and not having children. If those are hard topics for you to read about, feel free to skip this one.

I have never wanted kids. 

When I was 16, I knew I didn’t want kids. I wanted to be a writer. I wanted my work to live on after me. (That’s the kind of cringe that whirled around my teenage brain.) When I was 16, no one seriously thought I wouldn’t have kids. But I knew. 

The older I’ve gotten, the more this feeling has taken root. When I considered the things that pushed me, pulled me, lit a fire in my rib cage and gave the hours purpose, kids were never it. Instead, I longed to move to New York, to become a writer, to fall in love, to see many countries, to own a home. 

Beyond that lack of desire for having children, I see the compromises parents make—especially during the depths of the pandemic. And, this too: I couldn’t fathom willfully creating a situation where I needed more medical care, more trips to the hospital. I worried about my heart.

The truth is, my lack of desire for having children has sometimes felt like a luxury. Several women close to me have had harrowing experiences with egg freezing and IVF, and when they’ve told me about it I’ve felt a secret relief: Whatever setting in people makes them want to be mothers, well, it wasn’t activated in me. I’ve never had to agonize over whether pregnancy was worth the risk and investment, worry about having the right partner, or endure the anguish of not being able to have children, as do so many women with congenital heart defects (and women in general).

Questions, questions 

My disinterest has mostly been an issue for other people. Not my parents—I’ve been lucky that they’ve never pressured me. I mostly mean strangers and acquaintances. 

One thing I’ve learned: When you tell people you don’t want kids, you get a lot of follow-up questions. “Why?” Or, “Won’t you change your mind?” Or, “What if you regret it?” A guy I was dating years ago asked me about regret, and I didn’t have a response. I now have one: Yes, of course I’ll regret it. Who doesn’t sometimes regret major life decisions? That doesn't mean it’s the wrong choice.

Over the years, friends and acquaintances have asked me whether I’ll keep my name when I get married, assuming I’d get married. When I say that I would keep it, the inevitable next question is, what about for your kids? Assuming I’d have kids. 

In my last serious relationship, I made it clear early on that I didn’t want children. I was militant about it, and I didn’t need to be—at least not so early in the relationship. He was undecided. All I could think was, what a privilege, what a privilege not to feel like you need an answer to that question.

As regular readers know, I was born with a complex congenital heart defect (CHD). My cardiology team started asking me whether (or when) I would have kids when I was in my early 20s. 

My first adult congenital cardiologist specialized in pregnancy in CHD patients. He asked me at every annual appointment, and I would tell him the answer—it was always the same. After several appointments, I looked him in the eye and told him, “I don’t want kids. I understand that if I have them, I need extra cardiac care, and I will tell you. But I don’t want them. You don’t have to keep asking me.” 

At one appointment, I asked what a pregnancy would involve for me. He said I could do it if I wanted, but it would be higher risk—echos¹ every month, stress on my heart and probably more beyond that. He added that I should consider not just the pregnancy but also how I would age with children. When I got older, would I have enough energy to take care of them? Neither of us knew. 

For a solid decade, I told my cardiology team over and over that I didn’t want children. On my medical chart, a document filled with specificities, this was expressed in a euphemism: “doesn’t want to have a family right now.” The system had one definition of “family.” 

The pregnancy assumption

I’m not the only female patient born with a heart problem who fielded repeated questions about pregnancy from her cardiology team. 

One 30-something woman I know had a cardiologist tell her they would make pregnancy happen for her, despite the risks of her congenital heart condition. When, in her mid-20s, she told them that instead she preferred to be sterilized, her cardiology team balked. A fellow told her he was concerned she wasn’t ready to make the decision, adding that if she had been married and came to the clinic with her husband, he’d consider it. But she was making a rational choice—forgoing a high-risk, 9-month endurance test in favor of an outpatient procedure—and supporting adoption, a cause she cares about. She had to convince her team why it made sense. Now, she has two kids she adopted from foster care. 

The default assumption in the congenital cardiology community, as in the culture at large, is that women want biological children. Of course, many women do. When the community works from this assumption, however, it means some patients lose out. 

Every scientific study, expert panel, conference session, webinar or community conversation that focuses on pregnancy and CHD—and, trust me, there are a lot of them, relatively speaking—is one that doesn’t focus on menstruation, menopause, abortion or other aspects of women’s health. Why have I never seen a panel on navigating adoption with a heart defect? (If I’ve missed this, please let me know about it in the comments!²) 

And pregnancy is perilous. We don’t know enough about how it affects the delicate cardiac repairs that many CHD adults have. Many women born with heart conditions will have biological children and be just fine. Others will not. Some women will grow up expecting to have kids, only to learn later that it will be too risky. Others will know from an early age that pregnancy isn’t feasible. We do these patients a disservice when we prioritize it above all women’s health issues.

As I’ve gotten older, questions about having children have come up less and less, inside and outside my cardiac care. I became an aunt three times over—a position I cherish. My risk level has (presumably) increased as I aged and my heart health got more precarious. At some unknown point, it became clear that I would not be having biological kids, whether I wanted them or not.

Another thing I’ve learned: When you tell people you can’t have kids, you get zero follow-up questions. 

I want to hear from you. Do you want kids? Why or why not? What has been your experience discussing pregnancy with cardiologists?

1. Echocardiograms, i.e. ultrasounds of the heart

2. Update, Aug. 7, 2023: The Adult Congenital Heart Association hosted a webinar in November called “Alternative Ways to Start a Family.” I haven’t watched the webinar yet, but I’m told adoption is one of the topics covered.