The complexities of deciding to have more children in a rare disease family

When people hear about in vitro fertilization (IVF) after a rare disease diagnosis, they probably think the hardest part is either the cost or the medical side of things. Those parts are definitely overwhelming. But for me, the hardest part wasn’t the science; it was the question that kept circling in my mind, over and over: Could I mentally handle another child?

After my daughter Caroline was diagnosed with Pompe disease, our whole world shifted in ways I never saw coming. Parenting a child with a rare disease changed everything: my routines, my priorities, even the way my body reacts to stress. I had to get used to living with uncertainty, and I learned how to keep going, even when fear was always present, just under the surface.

Eventually, I found myself asking hard questions about what our future might look like. One of the biggest questions for our family was whether we should try for another baby.

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Emotional endurance

Every rare disease family faces this crossroads in their own way. Some decide that their family feels complete after a diagnosis. Others can’t imagine going through pregnancy again after what they’ve been through. For some, the cost of IVF or genetic testing is just too much. And for many, there are big questions about ethics, grief, and the unknowns that are hard to untangle. There is no universal right answer.

But I think many of us share the same quiet fear: How do you keep growing your family when you’re already carrying so much?

In our case, we were fortunate to have access to IVF with genetic testing. I know not everyone has that option, and I don’t take it for granted. For us, the decision wasn’t really about money. It was about me — my heart, my mind, and what I honestly felt I could handle.

As much as I wanted another child, I couldn’t ignore the reality of our daily life. Pompe disease is unpredictable and relentless. Even when things seem stable, it needs constant attention. There are always appointments, infusions, therapies, and so much monitoring and advocating. The worrying never really stops. Parenting a child with a rare disease doesn’t pause just because life is busy. It finds a way to fill up every bit of your mind.

I worried constantly about balance. Would my older kids feel left out because so much of my attention goes to medical needs? Would a new baby need more from me than I could give? Could I really split myself in enough directions without letting someone down? The truth is, I didn’t feel sure of myself.

I don’t think people talk about this enough. Sometimes, deciding whether to grow your family after a diagnosis isn’t about love. There’s always enough love. Parents always find more love to give. It’s about whether you have enough emotional endurance.

There were times I felt guilty just for wanting another child — as if acknowledging that desire somehow meant I wasn’t fully content or grateful for the children I already had. Other times, I felt guilty thinking about how my healthy children might end up carrying extra worries because of their sister’s disease.

Parenting a child with a rare disease adds so many layers to decisions that used to feel simple. But somewhere along the way, I realized I was never going to feel completely unafraid.

No amount of planning or testing can remove all the emotional risk. IVF could help lower some of the medical risks for our family, but it couldn’t answer the deeper questions in my heart. Could I do this again? Could I stretch myself further? Could our family hold both joy and hardship at the same time?

In the end, I realized fear couldn’t make this decision for me. I had to choose the kind of future I wanted for our family, even with some uncertainty. And honestly, I still don’t think there’s a perfect answer to any of this.

I think most rare disease parents are just doing their best, making impossible choices with only part of the picture. We’re always trying to protect our kids, but also trying to protect ourselves, too.

If you’re wrestling with this decision right now, I hope you know that whatever you choose is valid. Choosing not to have more children is valid. Choosing IVF is valid. Choosing to grow your family naturally is valid. Choosing to pause and wait is valid. There isn’t a brave or a selfish choice here. There’s only what’s right for your family.

For me, IVF wasn’t just about medicine. It was a journey through my own limits, fears, hopes, and what it means to be a mother. I still carry a lot of those fears, but I also remind myself that rare disease families are capable of holding extraordinary amounts of love alongside extraordinary uncertainty.

Sometimes both exist at the exact same time.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.