The hidden cost of fear-based parenting for children with hemophilia

If you’re raising a child with hemophilia, I understand the fear. It starts early — before sports, sleepovers, and field trips, and often before they’re old enough to understand their diagnosis.

You learn about joint bleeds, head injuries, emergency room visits, and all the things that can go wrong. You hear stories that make your stomach drop. And because you love your child, your instinct is to protect them. That’s normal.

But one thing I’m learning as a mom is that we can’t parent effectively from a place of fear.

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I should acknowledge that my daughter hasn’t been tested for hemophilia. But she’s a carrier, which means it will likely always be part of our family’s story. And my husband, Jared, grew up with the condition.

Through him, I’ve had the privilege of seeing not just what it’s like to raise a child with hemophilia, but what it looks like when that child becomes an adult. I’ve seen the resilience, self-advocacy, and careful calculations that become second nature. I’ve also seen how difficult it can be when the people who love you most struggle to see that you’ve grown.

Fear can help us identify risks. It can encourage us to plan ahead and stay vigilant. But when fear becomes the foundation of every parenting decision, it can quietly shrink our children’s world before they’ve had a chance to explore it.

And sometimes, without meaning to, we become our child’s first bully. Not by yelling at them or calling them names, but by becoming the first voice that tells them they can’t do something. When we see weakness before strength, they learn to doubt themselves.

Start with their abilities, not your own fears

Most parents of children with hemophilia have probably asked some version of the same question: “What if they get hurt?” It’s a reasonable concern, as hemophilia isn’t something we can afford to ignore. But I sometimes wonder if we’re asking the wrong question.

Instead of starting with what could go wrong, what if we started with what our children are capable of? What skills are they developing? What accommodations might help them participate safely? What would happen if we assumed competence before limitation?

Every person with hemophilia is different. Their treatment plans, bleed histories, and comfort levels vary. But I’ve met children and adults with hemophilia who’ve succeeded at doing seemingly impossible things. They play sports, travel, and build colorful careers. They become advocates, partners, parents, and leaders — not because hemophilia disappeared, but because they learned how to live with it.

That process starts when someone believes they’re capable and when they’re allowed to try. It starts when they hear, “Let’s figure out how,” instead of an immediate, “No.”

When fear outlives childhood

What concerns me even more is what happens when these dynamics follow our children into adulthood.

I’ve met far too many adults with hemophilia who have spent years proving what they’re capable of. They’ve learned to self-infuse, navigated jobs and relationships, travel, and live independently. They’ve managed bleeds, advocated for themselves, and solved problems without a parent stepping in. Yet some are still treated as though they’re one wrong move away from disaster. The fear that may have been understandable when they were 5 years old never evolved as they did. And that’s a painful thing to experience.

At some point, overprotection stops feeling like protection and starts feeling like a lack of trust. It sends the message that no amount of competence will ever be enough, and no amount of experience will change how you’re seen.

Every person deserves the dignity of being recognized for who they are today, not who they were during their most vulnerable moments. Our children will grow. Their skills and confidence will grow. As parents, we have to grow, too.

Otherwise, we risk holding them hostage to a version of themselves they outgrew years ago.

Preparing them for a world without us

Perhaps the hardest truth of parenting is that our job isn’t to eliminate every risk. Our job is to prepare our children to manage risk themselves.

One day, our children will attend events without us. They will have to make their own decisions and face their own unique set of challenges. We won’t always be there to assess every situation for them. But we can help them build the confidence and judgment they’ll need when that day comes. We can teach them how to recognize problems, communicate their needs, advocate for themselves, and understand their condition.

Hemophilia is real. The risks are real. But so are our children’s abilities.

So if you’re a parent like me, carrying fear in one hand and love in the other, maybe the question isn’t “What could go wrong?” Maybe it’s “What might my child be capable of if I give them the chance to show me?”

Note: Hemophilia News Today 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 consult your physician or another qualified healthcare 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.