Envisioning my daughter’s life as a hemophilia carrier

As she ages beyond nursery school, I'm vigilant about clues to her status

Alliah Czarielle avatar

by Alliah Czarielle |

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I think about my daughter’s future a lot, especially now that she’s getting older. At 5 and a half, she’s just finished senior nursery and is headed for big school in a month. She’s skinny and nimble, having lost most of her baby fat except for her cheeks. She loves to play online games on the phone and computer and has learned to video call her friends.

As I write this, in fact, she’s gone to her cousin’s house next door to play. She says she’s brave enough to go alone. (To that, I can only shake my head and smile.)

My Google Photos app gives me automatic push reminders of happy moments with family. It’s perfect for a mom like me, who has attention-deficit/hyperactivity disorder (ADHD), since I don’t naturally remember these things. So far, my favorite memories are of my daughter taking swimming lessons, running around the school campus like the free-spirited kid she is, and receiving “Awesome Artist” and “Nursery Buddy” awards for making excellent art and being so friendly to people of all kinds and ages.

But these also remind me that my little baby is growing up. As she matures, there’s a reality she’ll need to face — that of being a hemophilia B carrier.

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Hemophilia B carrier concerns

My husband, Jared, has severe hemophilia B. Our daughter is familiar with his bleeds and understands how they occur. She helps care for him when he’s injured and has seen him perform self-infusions of factor IX at home. She’s even helped with the process. While she playfully screams at the sight of a needle, she’s stoic and indifferent during her own blood tests. In our home, needles are a regular part of life.

So far, she doesn’t exhibit any significant symptoms of a bleeding disorder, but it might be too early to tell. I’ve been vigilant since she was a baby, especially when she was just learning to walk. She’s always been physically active like her dad, constantly scaling furniture and jumping off high places as soon as she’d learned how. She gets scrapes and bumps now and then, but none of the kind that would warrant serious attention.

When she was a toddler, she cut her lip when she hit a table by accident. The wound bled profusely for a few minutes, and her grandfather, who’s a doctor, was concerned. But it ended up resolving, so there was no more need to panic.

I can’t tell whether she’d bled longer than I would’ve in such a circumstance. Without a formal factor assay, it’d be impossible to know for certain.

Testing and psychosocial impact

Other circumstances that could cause hemophilia concerns include her menstruation, which is still several years away, and loss of teeth. In the event she experiences problems, I’d want her to get tested. I believe it’s important for her to know, so she can learn to manage any issues as early as possible. Since her father has managed hemophilia all his life, it won’t be a foreign concept to her, and she won’t be alone. Plus, given the resources now available for women and girls with hemophilia, I’m hopeful that she’ll receive good care.

The psychosocial impact of a hemophilia diagnosis can be significant. It often changes the future, especially regarding childbearing, often a central aspect of identity for many women. I don’t wish to pressure my daughter in this regard. However, Jared is firm that he wouldn’t encourage her to have a child, knowing what it’s like to grow up with hemophilia in the Philippines. It wasn’t easy for him. But of course, at the end of the day, we believe it’s her body, her choice.

I support my daughter in seeking psychological help. I have ADHD and bipolar II disorder and rely heavily on therapy. Likewise, Jared has seizures that are triggered by psychological events. I’ll encourage her to seek mental health support, not just when needed but as part of her general health maintenance.

Hemophilia carriers often face anxiety related to their potential symptoms and possibility of having a child with a bleeding disorder. Understanding what it means to be a hemophilia carrier is one thing, but knowing her disease status early can help her gradually come to terms with what she’s inherited.

I often remind myself that while the future holds uncertainties, being proactive and informed can help us navigate it better. For my daughter, knowing her hemophilia status will empower her to make informed decisions about her health and future.

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.


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