Pregnancy, CHD, and the Questions I Kept Asking

I started asking whether I could have children when I was around 14 years old. I was in high school, not sexually active, and nowhere close to actually trying to have a baby, but I knew I wanted kids someday, so I asked.

At cardiology appointments, often with my parents sitting right there in the room, I would ask my cardiologist if pregnancy could ever be possible for me. For years, the answer was reassuring: as long as I continued doing well, then yes, pregnancy could be a possibility. At that age, that was really all I needed to hear. I remember feeling comforted by it. In my mind, the question was basically: Can I have a baby someday? The answer was yes. Great. Done.

What I did not understand yet was what actually going through a pregnancy might look like for me.

What would pregnancy look like for me day to day? How would my heart handle the extra strain? What would it require from my body while I was pregnant? And what could it mean for my health long term? At 14, I was really only asking the first question: Can I have a baby someday? It took getting older for me to realize how many layers there were to that question.

As I got older, the answer itself never drastically changed. My doctors still felt pregnancy was something I could potentially do. In fact, as the conversations became more serious, I was told that from a health standpoint I was essentially an ideal candidate, considering my congenital heart disease and Fontan circulation. But there was an important second part to that answer: if I wanted to try to become pregnant, it needed to be planned.

My care team wanted to know before I started trying. They wanted testing beforehand, including a closer look at my heart function and rhythm, to make sure I was healthy enough to move forward and that my testing looked good. As I moved into my 30s, the conversations also became more time-sensitive. I was told that if carrying a pregnancy was something I really wanted, sooner would likely be better than later.

Women in general hear that fertility and pregnancy can become more complicated with age, but for me there was another layer to it because of my heart. I was already beginning to feel the effects of getting older in a body with complex congenital heart disease, and the concern was simply that pregnancy would likely be harder on my body the older I got.

What really started to change things for me was a question I kept asking my cardiologists over the years: Could pregnancy affect how long I live? Could the extra strain on my heart and Fontan circulation take years off my life? No one could give me a definitive answer, and that was the part I could not stop thinking about.

I understood that pregnancy might be possible. I understood that I could be monitored closely and that my care team could plan for it. But no one could tell me what putting my body through pregnancy might mean for me five, ten, or twenty years later. I understand why they could not and still cannanswer that question. Adults living long-term with Fontan circulation are still part of a relatively young and evolving population. There are questions medicine simply cannot answer with certainty yet. But that uncertainty mattered to me.

For years, I went back and forth about whether carrying a pregnancy was something I wanted to do. Then last year, I attended the CATCH conference, where there was a panel focused on pregnancy and congenital heart disease. Doctors and nurses spoke about the medical side of pregnancy, and patients shared their own experiences of what it had been like for them.

Hearing those stories made everything feel more real. I heard women talk about how hard pregnancy had been on their bodies, including patients whose heart conditions were less complex than mine. I had already been going back and forth for years, but that panel helped solidify something I had been feeling for a long time. I left thinking: I don't know if carrying a pregnancy myself is worth that risk for me.

That experience, combined with years of asking about longevity and receiving the same honest answer of we just don't know, helped me make the decision I had been moving toward for a long time. I decided I do not want to carry a pregnancy.

But making that decision did not make the grief disappear. There are still moments when I question it. There are still moments when I picture what it would be like to be pregnant, to feel a baby move, to have that experience for myself. Sometimes I still wonder, What if I could do it? What if everything turned out fine?

I think that is part of what makes this so complicated. You can make a decision because you believe it is the right one for your health and still grieve the version of your life that decision asks you to let go of. Those feelings do not mean I made the wrong choice. They mean I am still allowed to grieve what I am choosing to let go of.

Not because my doctors told me I could not. Not because there was no chance my body could handle it. And not because another woman with congenital heart disease should make the same decision.

This is such a personal choice, and it is going to look different for everyone. For some people, experiencing pregnancy may matter so deeply to them that they are willing to accept more uncertainty or risk in order to pursue it. I completely understand that.

Someone else can hear the exact same information I did and make a different decision.

For me, when I looked at what mattered most, I kept coming back to the same thing: I want to do everything within my control to give myself the best chance at living as long and as healthy a life as possible.

The unknown around what pregnancy could mean for my long-term health was ultimately more risk than I wanted to take.

And I also began to realize that carrying a pregnancy is only one way to build a family.

There is surrogacy. There is adoption. There are blended families. There are other paths to motherhood and parenthood.

I also recognize that those paths are not simple. Surrogacy and adoption can come with their own emotional, logistical, and financial complexities, and I still have questions about what those options could realistically look like for me. Cost is a real consideration. So is access. So is whether one of those paths will ultimately feel right for my life.

I do not have all of that figured out yet. But what gives me comfort is knowing that carrying a pregnancy is not the only possible path forward.

Deciding not to carry a pregnancy did not mean deciding not to have a family. It just meant accepting that my path may look different than the one I imagined when I was younger.

I actually think this deserves an entire conversation of its own, because there are so many different ways family can take shape, especially when health changes what you once imagined your path might look like.

But there is another part of this story that I think is just as important: I was the one who brought pregnancy up, again and again.

I have had quite a few cardiologists over the years, and I do not remember any of them being the first to ask me about pregnancy or what I wanted my future family to look like.

I had excellent doctors, and I was fortunate enough to feel comfortable asking these questions myself. But not everyone is going to think to ask about pregnancy at 14 years old. Not everyone is going to know what questions to ask, or even realize that their heart condition could affect those decisions later in life.

I believe these are conversations that should be brought up.

Pregnancy, fertility, contraception, and family planning can be heavy and emotional topics, but that does not mean they should be avoided. Patients deserve the opportunity to be educated, to ask questions, and to understand what their diagnosis could mean for their future before they are suddenly faced with a decision.

Even if someone is nowhere near ready to have children, the conversation can still start.

Sometimes simply knowing what questions to ask gives you more time to understand your options, revisit them as you get older, and make decisions with more information.

Living with congenital heart disease can force you to weigh risks that most people never have to consider. That can feel frustrating, unfair, and overwhelming, especially when there is no perfect answer.

What I would tell anyone else with CHD is to ask the questions anyway.

Ask early. Keep asking as you get older. Gather as much information as you can. Revisit the conversation as your health changes and as medicine learns more. Ask what something could mean for you long term. Ask what pregnancy itself might look like for your body. Ask what testing would be needed. Ask about the risks. Ask about the unknowns. Ask what other options exist.

And if your doctor has not brought it up, you are allowed to.

You are allowed to ask about pregnancy years before you are thinking about becoming pregnant. You are allowed to ask about contraception before you are sexually active. You are allowed to ask what your diagnosis could mean for your future, your fertility, and becoming a parent.

You do not need to wait until a decision is directly in front of you.

Then give yourself permission to make the decision that feels right for your life.

There is no universal answer here.

For one person with congenital heart disease, experiencing pregnancy may feel worth the uncertainty that comes with it. For another, it may not.

Neither choice is more courageous. The important thing is that the decision is informed, intentional, and yours.

If I could tell my younger self anything, it would not actually be to ask sooner. She was already asking.

I would tell her to keep doing exactly that.

For me, self-advocacy started long before I understood that phrase. It looked like a 14-year-old girl sitting in a cardiology appointment with her parents and asking a question about a future that felt incredibly uncertain and far away.

I am really grateful she asked.

Still growing, still glowing,

Courtney

Medical Disclaimer: The information shared in this article is based on my personal experience and is intended for general informational purposes only. It is not intended to provide medical advice, diagnosis, or treatment, and should not be used as a substitute for guidance from a qualified healthcare professional. Always consult your healthcare team regarding your individual health needs and circumstances.