Talking to your child about taking risks with hemophilia

This is part of an advocacy series that honors Hemophilia Awareness Month. To read more in this series, published throughout the month of March, click here.

When you’re a parent of a child with hemophilia, it can be daunting trying to balance their safety and independence. You can’t stop every bleed, bruise, or hospital trip.

I wanted my sons to stay curious, but still always be on the lookout for potential risks — corners of furniture, unexplored areas at the park, etc.

Over time, I realized letting them play and explore was best — particularly for their emotional development. It also helped them see themselves as more than just “the boy with hemophilia.”

Safety vs. independence

When my second son, Caeleb, was 5, he wanted to play T-ball, even though he already had a bad knee and ankle. I worried whether he could really play.

Caeleb hit the ball, and his coach told him to run. Watching him limp as fast as he could made my husband and me realize this sport wasn’t right for him. What could I realistically say to him, except: “Yay, Caeleb! That was a great game. The season is over, and you did a fantastic job!” He didn’t ask any questions, and we went out for ice cream. But sometimes, realizing an activity might do more harm than good for your child isn’t that simple.

Talking about playing it safe with kids who have hemophilia can be hard. Contact sports like football and wrestling aren’t the best options. Even basketball can be tough on their joints, and playground time can be risky. Kids want to fit in, so how do you set limits without discouraging them?

Talking through risks

When kids are younger, it’s easier to guide them about living with hemophilia. Some activities, such as swimming, aren’t as physically demanding, so safety concerns are easier to manage.

As children get older and better understand their bleeding disorder, you can teach them more about hemophilia. But try to focus on explaining your reasons — instead of just saying no or that the season is over.

Some discussion questions to help your child decide whether an activity is worth the risk include:

• What happens to your body during a bleed?
• What will it mean if you play the sport and a specific joint is injured?
• Is there a high risk of bodily injury, including head injuries?
• How do you know if the risk is necessary or not?
• How can you protect yourself with prophylaxis and pre-treatment?
• What are some safer options to explore (swimming, golf, archery, etc.)?

It’s also important for teachers, coaches, and other adults who supervise your child to understand hemophilia and how it affects the body. Some will be supportive and ask for guidance. Others may worry about the extra responsibility, so education is key.

• Clearly explain the process for a potential bleed or injury, including calling their parents and bringing your child to the nurse.
• Advocate for reasonable accommodation.
• Encourage questions and concerns.
• Empower your child to speak for themselves instead of you, the parent, sharing all the information.

Of course, it’s impossible to avoid all risks. My sons, who have severe hemophilia, can get a joint bleed just from sitting in class. Bleeds happen. The goal isn’t to avoid every injury, but to make sure everyone, including your child, understands the risks.

Trust that you’ve shared your wisdom, and trust that your child will find their way. Sometimes, that’s the bravest thing a parent can do.

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 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.