Eight years of care, and counting
Rémi has been a heart warrior since he was an infant. He was born with a heart murmur, and then unfortunately diagnosed with subaortic stenosis – when the heart’s aortic valve narrows and reduces blood flow. He would undergo not one but two open-heart surgeries before his 8th birthday.
According to Rémi’s mom, Andrée-Kim, "it was a big shock to hear that our son needed open-heart surgery. But the staff at The Children’s were very reassuring. I knew they had decades of experience and knowledge and that really helped. We felt comfortable trusting them with our son’s life."
"What really stood out in the care we received was how much the nursing staff cared about Rémi’s well-being, as well as my whole family’s," adds Andrée-Kim.
Thanks in part to the generous support of En Cœur, The Quebec Foundation for Children with Heart Disease, The Children’s Cardiology Division added a dedicated nursing position to ensure that young patients with cardiac conditions receive a seamless transition of care from the fetal and neonatal age, through to adolescence and adulthood. Michele Zegray, who has been a member of the cardiology team for more than 20 years, currently occupies this position.
"Michele provided extraordinary care and support for us. She was constantly checking in with me, and giving me tips on how to navigate the system. She gave me books to read with Rémi and his little brother too, so everyone could understand what was happening. Michele managed logistics like parking passes for us, and was always there when we really needed her – from pre-op, to the Pediatric Intensive Care Unit, to today!
She gave us so many tools and so much advice, and most importantly, she really listened to our needs. It is extremely comforting to know we will be followed by a dedicated transition nurse for years to come," says Andrée-Kim.
"We are extremely grateful for the amazing care we are receiving at The Children’s, and will continue to receive for another decade! We are also very thankful that En Cœur, The Quebec Foundation for Children with Heart Disease is supporting this crucial position. I can’t imagine this experience without it," says Andrée-Kim.
"We know there is a whole team of people taking care of us, and our hope is that Rémi continues to be OK, and nothing ever prevents him from doing all the things he loves," Andrée-Kim adds.
Michele also highlights the importance of collaboration in successfully helping families through this process – from pre-op, to Child Life, to the Pediatric Intensive Care Unit staff, nurses and surgeons – everyone plays a pivotal role. As she explains, "I can only do what I do because so many people do so much other important work." Together everyone truly achieves more!
Thank you, En Cœur, The Quebec Foundation for Children with Heart Disease, for making this position possible," concludes Rémi’s mom.