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Dilan

'We’ve been infusing our son since he was 7 1/2 months old'

Nathalie, Francis and Dilan

We’re a family from Victoriaville, Quebec, living with a young hemophiliac child. My name is Nathalie and my husband is Francis.

In November 2005 we learned that our first son, Dilan, 4 1/2 months old at the time, had severe hemophilia A. It was a total surprise, since no one in our family had this disease! We were saddened and frightened because we really didn’t know anything about the disease.

Following the diagnosis, we were referred to the treatment centre at Hôpital Sainte-Justine 200 kilometres away in Montreal, in order to get information about treatment. Right from the first meeting, we were told that we would be learning to infuse our son ourselves as soon as possible.

Two months after the diagnosis, during the night of January 1, Dilan had his first joint bleed into his right elbow.We went to the emergency room at the Hôtel-Dieu d’Arthabaska and they transferred us to pediatrics, where we met Roxanne Nadeau. For those who don’t know her, she’s a nurse and the mother of two boys with hemophilia. So it was very reassuring to know that our son was in good hands!

Following this first joint bleed, Dr. Georges-Étienne Rivard decided to start Dilan on prophylaxis.We didn’t think it was going to happen so quickly. It frightened me to know that I’d soon have to infuse my child, but I saw that it wasn’t all that bad. I think that when you don’t have a choice, you find the inner strength that helps you get through things. All I wanted was for Dilan to be well, so I had to overcome my fears.

The staff takes great care of us: they take the time to answer our questions and offer us documentation and, especially, support. Since we live in an outlying area and we don’t have a treatment centre near us, Hôpital Sainte-Justine offered us the tele-medicine service. This tool allows us to communicate by Internet with our nurse.We can see and hear each other; it’s as if we’re in the same room!

Beginning on January 12, we traveled once a week to Sainte- Justine for an infusion. During this time, our nurse, Claudine Amesse, taught us. Francis and I began by watching Claudine do it, and the next week, we practiced on a plastic arm, then on each other both at the hospital and at home.We practiced twice a week. The fact that Dilan is a chubby baby was a challenge and, at that age, it’s not easy to find a good vein and especially to keep him immobile.

On February 24, after five visits, the great day arrived when Francis infused Dilan for the first time. The next week it was my turn. I was really happy to have overcome my fears because infusing my husband and infusing my son were two completely different things. I was teary-eyed because I was so proud that we were both able to infuse him so quickly. Dilan was only 7 1/2 months old, and I didn’t think I’d be infusing him before he was a year old, but I guess anything is possible when you have confidence in yourself and are well supported! Claudine constantly encouraged us and motivated us; she believed in us!

Since April 12, we infuse Dilan at home. During the first three weeks, we had a nurse from the local community health centre come to our house and supervise us, helping us immobilize Dilan. Now, we do it without help and it’s going well.

However, if we need it, we can go directly to pediatrics at the Hôpital de Victoriaville where a nurse will give us a hand to do the infusion. It’s great not having to travel to Montreal and wait for his injection every week. The infusion takes a few minutes and then he can get back to playing!

When we attended the family weekend organized by the Quebec Chapter, we realized how important it is to meet other parents of children with hemophilia. During discussions, we realized that we weren’t the only ones living with this disease. This was a great comfort to us since, as everyone knows, the first months are extremely difficult.

Dilan’s hemophilia has helped us to grow and allowed us to realize how important the support of family and friends really is. Now we live day to day and appreciate every minute.

Dilan’s hemophilia has helped us to grow and allowed us to realize how important the support of family and friends really is. Now we live day today and appreciate every minute.