Valérie Jean

I’m the mother of three amazing girls: Angélique, 10, Céleste, 6, and Félicité, 4. I’d never been to Sainte-Justine before working there as a research assistant in 2005. My first visit as a mother was in 2012, when I was around seven months pregnant. The ultrasound showed suspicious‑looking spots on the baby’s heart. And, then, like a bolt out of the blue came the bad news! We were told our baby had heart defects (tetralogy of Fallot with complete AV canal). She’ll have these defects for the rest of her life. The surgeries won’t cure her, but they will keep her alive and she’ll live an almost normal life. When she was born, we were dealt another surprise: she had no spleen. She’ll need to avoid certain bacteria and take antibiotics for the rest of her life. We’re learning to divide our time between the hospital and home, and to juggle life with two other children and one child who’s in the hospital all the time. We also suspect she has a syndrome that has yet to be diagnosed.

 

And that’s not all! Now we’re also worried about Céleste, after the doctor in Emergency who treats my baby noticed several spots on her body. We managed to get an appointment with a dermatologist. During the appointment, the resident went to get the dermatologist, who told us he thought she probably has a neurological disorder called neurofibromatosis. The meeting with the neurologist confirmed our fear. He did tests, which turned out to be negative. We were relieved, but even though the tests are negative, she could still have the disease. So, we still need to see the specialists every year.

In spite of ourselves, we can now say that we’re part of the Sainte-Justine family!

We’ve had great experiences and met wonderful people at this hospital, and we always feel safe when we’re here.

To make sure that continues to be the case, I decided to become one of the parents who joins the Users’ Committee.