Two-year-old Léo is a happy little boy. “he is always smiling,” says his mom, Adeline. Happy though he may be, little Léo doesn’t have an easy life.
Léo was born with MEDNIK Syndrome, an extremely rare, inherited multisystem disorder that kept him in the Children’s Neonatal Intensive Care Unit for the first nine months of his life. He was finally able to go home, but only once his parents were taught critical skills to deal with their baby’s many health issues, including serious gastrointestinal problems, a severe skin condition, and low muscle tone.
“It was bewildering, everything we had to learn,” says Adeline. She and Léo’s dad, Martin, had to manage different catheters, and learn about colostomy care, feeding tubes, and different creams and medications. “The most astounding thing is administering antibiotics intravenously, directly to the heart,” says Adeline, adding, “To us, this is parenting. We know nothing else.”
Léo’s care is now a little less complex: while there is still some tube-feeding, the central line to his heart has been removed. His communication and mobility skills are developing, and his parents expect he’ll start walking in the next few months.
According to Nathalie Aubin, assistant nurse manager of complex care, Léo and his parents benefit from the new Children’s: “Instead of sitting in a little corridor, they use our bright waiting room. There’s the atrium right below, where children can play and parents have access to commercial services. This is especially important as families who come for complex care can stay a few hours at the hospital between appointments.”
Exam rooms are also bigger and offer easy access to families with strollers or children in wheelchairs.
For Adeline it’s the team that really counts: “We couldn’t have dreamt of better service, of more compassionate, kind, and devoted people.”
A new era of health-care delivery
Because of you, we now enter an exciting new era of health-care delivery
. The new facility allows us to purchase equipment and provide services that would have been impossible in the old facility on Tupper St. On behalf of our patients, the hospital staff who were instrumental in designing their new work place, and the Best Care for Children campaign cabinet members who did an outstanding job, we thank you for being there for sick kids.
With your ongoing support, we are dedicated to forever keep our promise of preventing pediatric diseases, and treating and curing the children who face these challenges.
