Helene: Adjusting to Motherhood

Age 35. Montreal, Quebec.

Q. How has your life been since you had your first son, Gabriel, two years ago and was told he had severe hemophilia B?

A. Like any other parent who has a child with a disability, I think you start off a bit in denial. I didn’t really address the issue for Gabriel until he started walking and falling. In the first year of his life, I just thought, “Oh, it’s not a big deal.” But once he started to become more active, I think it hit me like a ton of bricks and I realized that he does have a disability and I need to deal with it.

Having a child with hemophilia, you’re more aware. You’re more aware of your environment, and you’re more aware of his condition. The challenge is that you can’t let the hemophilia lead his life; you have to let him lead his life.

As he gets older, hopefully it’ll get easier. And as we start treating at home, it’ll definitely get easier.

Q. How have you had to adjust your own life to give Gabriel the care he needs?

A. I decided to start my own business – an online boutique selling baby items. It gives me the flexibility to take care of Gabriel without having to report to anyone.

The other thing my husband and I had to consider in thinking about our own plans was whether to have more children. With hemophilia in my genes (my brother has hemophilia, so we know I’m the carrier) I had a 50/50 chance of having another child with the disease. My husband and I chose to have another child but we had to discuss it in detail and lay out what it would mean for us and for Gabriel. Thankfully, our second son Robert was born four weeks ago and is hemophilia-free!

Q. What other aspects of being a new mom of a baby with hemophilia have been challenging?

A. The stress. You’re constantly worried that something’s going to happen to them. Sometimes it makes me stressed to even take him to a birthday party. Other moms will say, “Why don’t you just relax?” And I say, “Well, if your son tumbles down the stairs and bumps his head, he’s okay, but if my son bumps his head, I have to take him to the hospital.” I have to be more vigilant than they do about watching him.

Also, guilt plays a big factor in this. You feel like you brought this into their lives and they’re never going to have a normal life because of you. It’s definitely a learning experience to try to overcome that feeling.

Q. As Gabriel is getting older and seems to be more aware of his own disease – with frequent treatments and hospital visits – you said it seems to be getting harder for him. What has this stage been like and how are you helping him deal with it?

A. It’s been a struggle. Recently, we had to go to the hospital a number of times over a few months because he was starting to walk and hurting himself more often. I think it traumatized him. I couldn’t take him out of the house without him losing his mind. If I went to the mall or the supermarket, he’d start screaming if someone came close to him.

Eventually, we spoke to a psychologist through our hemophilia clinic and she suggested medical play at the hospital. So he’s been going to the hospital once a week or every two weeks to just play, and he’s slowly becoming desensitized to being there. It’s helping him learn that it’s okay for him to go to the hospital; he doesn’t have to be scared.

Q. What advice do you have for new mothers in your situation?

A. My advice is to take advantage of all the resources that are offered. Our hemophilia treatment centre has been phenomenal! Just last weekend, he bit his tongue and he wouldn’t stop bleeding. I called the nurse at 8 p.m. and again at 6 a.m. The fact that that’s possible is fantastic!

I also recently joined my local chapter of the Canadian Hemophilia Society. I realize now that I should have done that earlier on. At the beginning, when your baby’s not doing anything and not hurting himself, you don’t think about it, but once the reality hits and you start living with the disease, you realize it’s not a bad thing to speak to someone else who’s going through what you’re going through. Really, the best thing I can say is to just talk about it.