Brenda: Facing Challenges! Mom Takes Charge

Age 48. Carlisle, Ontario.

Q. You say your experience as a mother of a son with hemophilia has been different from other experiences you’ve heard about from the hemophilia community. Can you explain?

A. Josh developed inhibitors at two years old. When a child with hemophilia develops a bleed, you treat and the bleeding generally stops. With Josh, because he has inhibitors, treatment wasn’t stopping the bleed and the bleeding would continue. During his most difficult time, he would have, on average, three bleeds per week.

Now, we’re feeling very fortunate with Josh because the prophylaxis has been working  to keep the factor levels in his blood high enough to avoid the recurrence of the inhibitor and to avoid spontaneous bleeding.

Q. Staying active can be challenging for anyone with hemophilia, but is particularly difficult for those with inhibitors. How has that been for Josh?

A. When he was younger, he would get bleeds quite regularly . Because of that, he spent a considerable amount of time in a wheelchair and never became involved in team sports. With sports, you tend to develop skills as you grow, so now that he’s 17 – even though his body is in better shape than when he was younger – it’s a late time in life to start playing a sport, especially team sports.

We’ve always tried to encourage him to stay active in ways he can though. Swimming is very, very good for him, and he likes going for walks with his dog.

Q. What new challenges is Josh facing as a young man at 17 years old?

A. The issues we’re more concerned about as his parents are more of a social nature. He wants to fit in with the other kids. He doesn’t want them to know he has hemophilia. He’s seeing that kids can do things he can’t, and he wants to join in, but he doesn’t play any sports because he doesn’t have some of the physical skills necessary since he never learned them as a child. Sometimes he finds that it is tough to fit in.

Q. He’ll soon be transitioning from pediatric to adult care. How have you prepared him?

A. We led him into his teenage years by trying to help him become a good decision-maker on his own, rather than always making the decision for him. It would be easier to just keep him from doing everything, but then how is he going to learn what he can and can’t do?

He’s been infusing himself every day for three years or so, which I think is a huge step. This was a big transition period for me as well. I’ve always had the control of his care, so it will be hard to give that up.

Q. What concerns you about giving up the control in his care?

A. I’m worried about him not wanting to ask questions when he goes to an appointment without me. Is he going to come home and tell me everything that was said? Is he going to ask everything I feel we need to know? That worries me a bit. But it’s his responsibility and he’ll have to learn. And I think he’s ready for it.

Q. What advice do you have for other mothers of teen sons with hemophilia?

A. I think as a parent your job is to guide them into becoming a responsible adult – not always making those decisions for them, but helping them and working together to make the best decisions about their care. It’s difficult because you’ve always been there to protect them and make sure that they’re doing what they should be doing to protect their bodies. But you can’t always be there.