GROUNDBREAKING PARTNERSHIP
Four pediatric hospitals collaborating
When the doctors told Linda Moreau her daughter Nia would never walk or talk, she quit her job to become a full-time advocate for the child.
“After the diagnosis ... the stress was unbearable. We were swimming in the unknown,” said Moreau. “If I kept working, who would take care of Nia? There was no other way to co-ordinate all those appointments and therapy and operations.”
Like thousands of young Quebecers, Nia was born with a musculoskeletal disorder. Because she was born paralyzed on the right side of her body, she would require surgeries and therapy that would take her and Moreau on a trek across Montreal’s network of four children’s hospitals.
Moreau says the stress of ferrying Nia from one institution to the next could be overwhelming.
But those four hospitals are teaming up on a project to take that burden out of parents’ hands. On Wednesday, the Shriner’s Hospital, Montreal Children’s Hospital, Ste-Justine Hospital and the Marie Enfant Rehabilitation Centre launched the MUSCO initiative.
Thanks largely to a $10-million donation from the Mirella and Lino Saputo Foundation, families will get to work with a nurse who’ll accompany them across the network of hospitals. The child’s doctors, physical therapists and other professionals from the network will work together to make sure their care doesn’t overlap or that the patient’s family doesn’t receive conflicting information.
“It’s not only about transforming the care, it’s about making sure the family gets rest, that their experience is as smooth as it can be,” said Stefan Parent, an orthopedic surgeon at Ste-Justine. “If a patient is seen at Ste-Justine Hospital, they might need surgery here at the Shriners, they might need their post-operative rehab done at Marie Enfant.
“We want that transition to become a non-issue. We want to take as much administration out of this as possible so the patient can just focus on care.”
MUSCO is the first collaboration of its kind in Canada.
It took three surgeries, 10 casts, Botox injections and over a decade of physical therapy, but today Nia looks just like any other 13 year old. Not only does she walk and talk, Nia does gymnastics, she sings and speaks on behalf of the Shriners Hospital.
She recently finished in fifth place in the Miss Teen Quebec competition.
“I worked hard to get where I am today,” she said. “I’m hopeful that the collaboration we’re talking about today helps kids like me and their families.”
Parent says the project wouldn’t be possible without Mirella Saputo, who has insisted on being involved from its inception three years ago.
“For us it’s difficult. My children and grandchildren were blessed with good health and I can only imagine what these families go through,” said Saputo. “The answer that I get from all the families is that they get the strength from the child . ... The goal is always helping the children and the families.”
When she was born, Angélique Bélec’s scoliosis was so bad her spine was suffocating her vital organs. The doctors were able to operate and, as years went, Angélique soldiered on through treatment after treatment.
“She never gave up, she was always our ray of sunshine,” said Angélique’s mother, Isabelle Courchesne. “She would minimize it. And yet she spent so much time in the hospital so for us, we find our strength from her. She’s my inspiration.”
The MUSCO project will also see each of the four institutions buy better medical equipment and meet regularly to find the best practices for helping families navigate the medical system. Parent says that, over the years, parents have experienced long waiting lists and “gaps in services” associated with communication problems between the institutions.
Luca Patuelli’s experience speaks to the sometimes overwhelming nature of musculoskeletal disorders. He had his first spinal surgery as an infant and went through another 15 surgeries before his 18th birthday.
“When I look back, it was hard on my parents because they had to be there all the time and worry and make sure I got the best care. But it was hard on my brother, too,” said Patuelli, who uses crutches to walk because of his rare neuromuscular disorder.
“My brother doesn’t have a disability but it could be lonely for him growing up. My parents were focusing so much on me — they didn’t abandon him or anything — but I got a lot of their attention and sometimes it could be isolating for him.”
Despite his medical condition, Patuelli is now a professional dancer and choreographer who’s performed in 30 countries.
“I wouldn’t be where I am without the doctors, nurses and the team who were there to help us along,” he said. “I hope it can be even better for other kids like me.”