Our approach to talking with children about being a hemophilia carrier

Recently, my husband, Jared, and I asked our 7-year-old daughter what she knew about being a hemophilia carrier.

It wasn’t a serious family meeting. There was no carefully prepared speech. She was stimming and half-playing while we talked, and at times I wasn’t entirely sure how much of the conversation she was absorbing.

We started with something she already understood: genes.

“What are genes?” we asked.

“Traits,” she answered.

Close enough for a 7-year-old.

We explained that genes help determine the traits we inherit from our parents. She already understands that children take after their mothers and fathers. She enjoys watching short science videos, so the idea wasn’t particularly strange to her.

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Envisioning my daughter’s life as a hemophilia carrier

From there, we ventured into chromosomes. I’m considerably less confident that all of that landed. But it’s OK. There wasn’t going to be a quiz afterward.

Then I asked what being a hemophilia carrier meant to her. She understood that it meant she could someday pass hemophilia on to her children.

Hemophilia is already part of her world

I asked what she thought she’d do if someday she had a child with hemophilia.

“Infusion time!” she announced in a funny voice.

That made us laugh. Infusions are simply part of the scenery of her childhood. She’s watched her dad prepare factor and infuse himself. Hemophilia isn’t an abstract condition she encounters only in a textbook. It’s something that exists in our house alongside all the ordinary things families do.

Sometimes it even sneaks into her jokes. Once, while we were walking through the supermarket, she spotted a dining set called “Infuse.” “Infusion for Daddy!” she exclaimed.

That’s the relationship with hemophilia she’s grown up with. She knows it can be serious, but we choose to face it with a sense of humor.

But after making us laugh about her hypothetical child’s infusion, she offered a more serious answer.

“I’ll decide when I grow up,” she said.

Fair enough.

At the moment, she isn’t particularly interested in having children at all. Her reasoning echoes something I hear from plenty of teenagers and young adults today: Having kids is hard.

I can’t exactly disagree. Here in the Philippines, providing for a family on a typical paycheck isn’t easy. Parenthood is a major decision even before genetics enters the picture.

But she’s also 7. What she thinks about having children today doesn’t have to become a decision about the rest of her life. She may feel differently when she’s older. She may not. Being a hemophilia carrier shouldn’t make that decision for her, either.

It won’t be our last conversation

I want our daughter to understand the information she has about her body and her family. As she gets older, that understanding will need to grow, too. Being a carrier can have implications for her own health, not only for children she may or may not choose to have someday. But she doesn’t need to map out that future now.

I also don’t expect one conversation to accomplish everything. We’ll talk about hemophilia and carrier status again and again. The questions will change as she grows older. So will the answers we give her.

For now, our job is to offer information at a level she can understand, whenever she’s receptive to having the conversation. Sometimes that may look like a serious discussion. Other times, apparently, she’ll be playing while her parents attempt to explain chromosomes in the background.

Toward the end of our conversation, I asked what she’d say if she met another girl who was a hemophilia carrier.

“I’d say hi.”

Jared asked what she imagined they’d talk about. Would they talk about hemophilia? Or would they talk about having fun with their daddies?

Without hesitation, she chose the latter.

Then she reconsidered. She said she’d be OK talking about hemophilia, too, if that’s what her new friend wanted to talk about. I loved that answer.

Someday, being a carrier may become more significant to how our daughter understands herself. She may have questions we can’t anticipate yet. She may make choices entirely different from anything we imagine for her now.

That’s why I don’t think there should be one big “carrier talk” that parents give once and consider finished. These conversations can grow with our children. We can give them information when they’re ready for it without handing them adult decisions right away.

We want our daughter to have the knowledge she’ll need when those days come. But hemophilia doesn’t have to consume her understanding of herself before then.

Right now, she knows she’s a carrier. She knows her dad has hemophilia. She knows what an infusion is. And if she meets another little girl like her, she’d rather connect with her through play.

For a 7-year-old, I think that’s plenty.

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 seek the advice of your physician or another 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.