Haemophilia is just a part of who my sons are, like being tall

03/01/2016
Histoires de patients

My sons Nathan (aged seven) and Ben (aged nine) have lots of energy and are very funny and entertaining. They play basketball and want to play in the NBA when they grow up. I coach their basketball teams, and before they go to practice I infuse them with their factor concentrates. Nathan and Ben have severe haemophilia A. Ben loves all sports, and most of all he would love to play hockey; even today he still asks why he can’t play. For my boys, hockey and American football are out of the question.

Strange bruises started appearing on Ben’s body when he was 10 months old. He had really bad swelling and luckily our paediatrician was on the ball and recognised the symptoms of bleeding and referred us to the SickKids Hospital in Toronto. The diagnosis tore us apart. It was shocking. We were confronted with understanding what this condition would mean for our son, and figuring out how we were going to live with it. Our life trajectory changed in a huge way. We didn’t deal with it well. We went through a grieving process, mourning what we thought our life was going to be. There was a lot of fear.

Eventually we came to realise that the diagnosis wasn’t life ending, but it was life changing. Having the support of our healthcare system and working with nurses taught us a tremendous amount. We learned that if we give the treatments right our kids are going to be fine. Now we have found a very good path to live with the diagnosis. In fact, all the family have been very active in the bleeding disorder community, including grandparents, on the national board and at local level. We talk to newly diagnosed families and give them tools to help them face the diagnosis.

The kids get their factor concentrate every other day. We have been doing home treatment for seven years. You get into the routine. We have to get up early to do it. Infusing my sons every other day helps me to do my job as a father, and them to do their job, which is to be kids. We make the most of the time we spend doing the infusions. We talk; in fact we are getting really good at talking, and not all families take the time to do that.

God, grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

Ben was 20 months old when he bit his tongue badly. The recombinant factor we gave him triggered an inhibitor. We had only been living with this condition for 10 months and suddenly the treatment no longer worked. It was a double blow. We quickly learned how to administer immune tolerance induction (ITI), which pushes the body into submission. Imagine infusing 3,000 IU of factor every day in a two year old; Ben’s current dosage is half that. Ben was inhibitor free within a year, but it was a hard year. No kid wants to have to sit still for an hour. We used to lay him down and wrap him in a towel to hold him still. Even now we battle with trust issues because we had to do things that in the mind of a kid were traumatic. He just didn’t understand, and I think that had an impact.

The haemophilia treatment centre (HTC) team worried that Nathan would develop an inhibitor like his brother. They recommended he use human von Willebrand factor. First it was used on demand whenever he got a bleed, then at nine months old he started prophylactic treatment with Octapharma's human von Willebrand factor. Thankfully the approach worked and Nathan did not develop an inhibitor.

It’s hard when you are a little different but my sons’ haemophilia does not define them; it’s just a part of who they are, like being tall. This year our boys went to haemophilia summer camp for the first time. It’s great for their confidence to go away for a week and be with other kids with haemophilia. It gives them a feeling of independence. Nursing staff are there to give factor if the kids don’t know how. Ben is learning to self-infuse; he puts his hand on his nurse’s hand, and is becoming more active. They should be in charge of how they live with their condition. Learning to self-infuse means they can decide when and if they infuse, and they are in charge of the consequences. We want them to own it.

Every time my cell phone rings I always check, even if I’m in a meeting, because it might be the school and my first thought is: “Oh my god, what’s happened?”

Haemophilia has made them more compassionate and caring kids. We go to the SickKids Hospital twice a year and spend a lot of time in the same clinic as children fighting cancer. Being exposed to kids and young people with life-altering challenges has an impact. When compared with those kids, our boys just have to get a needle every other day. It allows them to be more supportive and empathetic. I am amazed by their poise when I give them their injections, and their perspective on life.

Eventually we came to realise that the diagnosis wasn’t life ending, but it was life changing.

We are very fortunate with the healthcare system we have in Canada. We’ve got it good; but it could always be better and our goal should be to make it better. There have been great advances in treatment, and pharma companies continue to do research into how to make these conditions even easier to live with. As leaders in the community, we need to make sure we safeguard our fantastic healthcare system and ensure that we don’t take it for granted. We also need to advance awareness globally to ensure that children in other countries are given access to treatment for this very treatable condition. It ought to be a human right not to live in fear of injury because of haemophilia.

I am not religious, but my mantra is the serenity prayer:“God, grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.”

Keywords

Rapport annuel

Maladies et thérapies

Hématologie

Hémophilie