Southlake Regional Health Centre announced yesterday it has joined a growing network of Ontario hospitals that are working together to boost the care it provides to children and youth closer to home, and one local family couldn’t be more pleased.
Mark and Nicola Tucci, along with their son, Max, 4, attended this morning’s news conference at the Newmarket hospital and shared what it means to them to have their local community hospital become a partner in the Kids Health Alliance.
Founded in 2017 by SickKids, Holland Bloorview Kids Rehabilitation Hospital, and Ottawa’s Children’s Hospital of Eastern Ontario, the alliance is a not-for-profit network of nine hospitals so far that aims to make tangible improvements to the local care of children and youth.
Southlake joins Markham Stouffville, Orillia Soldiers’ Memorial, Humber River, Pembroke Regional, and Michael Garron hospitals, all of which will contribute and draw on expertise to make front-line, evidence-based improvements to pediatric care.
The Tuccis' son, Max, has a rare condition known as spastic ataxia-5. The disorder is so rare that Max’s case is only the fifth known in the world.
It is a mitochondrial disorder which has caused his cerebellum to atrophy, Mark Tucci said. Max has low muscle tone, receives nutrition through a gastrostomy tube, is non-verbal, and fights severe seizures that can sometimes last six to eight hours.
“He is a tough little boy that almost always has a smile on his face,” Tucci said. “He enjoys all the things that other four-year-olds enjoy, he loves to read, go swimming, interacting with others, going to school, and listening to music, especially the 1970s rock band, Journey.”
“Max still does all the things other kids do, we just do them a little bit differently,” he said. “So, while Max’s disorder makes him one rare little guy, he’s not too rare for the care provided here at Southlake.”
The Tucci family knows many of Southlake’s pediatric staff by name. Max has been admitted to the pediatric floor countless times, sometimes just overnight but at other times the stay can last weeks on end.
“Our family believes that, when possible, there are many benefits of staying in our local community hospital,” said Tucci. “It allows our family and friends to come visit us, as hospital stays can often be isolating. It allows us to continue working, and gives us the mental sense of being at home. And, in a sense, it allows us to go home when needed. It provides a sense of comfort.”
Where the benefits of a hospital being part of a network such as Kids Health Alliance shows up is when the Tuccis plan a little getaway.
The family doesn’t travel much, but recently visited the Midland area. Max enjoyed the lake, eating ice cream and staying in a hotel, Tucci said. But what is always in the back of their mind is what happens if Max has a seizure.
There is a drug that aborts the young boy’s seizures, but the parents worry about whether or not the local hospital in the community they are visiting will have it on hand.
“These are the concerns that we face,” said Tucci. “The Kids Health Alliance helps fills a gap in consistency of quality of care. I encourage other community hospitals to consider this partnership as it could mean the world to families like ours.”
SickKids president and CEO Dr. Ronald Cohn, who is also board chair of Kids Health Alliance, is inspired by the network’s “core intent of trying to develop a system that provides all children of Ontario with the kind of standard of care they all deserve”.
“The Ministry of Health has rolled out an exciting and, probably, the biggest transformation of the system over the last 20 years and, personally, I’m very excited about this because it puts the patient at the centre,” Dr. Cohn said.
“From a kids’ health perspective, I do think it’s more important than ever that the alliance is stepping up to the plate to demonstrate the actual complementary value of this new health-care system,” he added.
As supporters stepped up to the podium one by one to offer their perspective on the value of the alliance, a theme emerged: infants, children and youth are not little adults; their health-care needs are unique and they are the future.
“To pick up on children being the future, this speaks to some of the culture change in health care that this transformation is going to bring about, and that’s around thinking more proactively and less reactively around how to keep people healthy (from pregnancy, and infancy),” Southlake president and CEO Arden Krystal said.
“We’re behind the eight-ball in Ontario and also throughout the rest of Canada, around trying to invest the time, energy and resources in those upfront proactive strategies,” she said. “It’s all about improving the care that we provide to children, and creating a seamless experience for patients and families.”
“Having a child with a major health issue is stressful, in itself, but having to navigate a fragmented system, repeat the same information over and over, contend with providers who may not understand your history and what you’ve gone through, and treatment regimes, is stressful for a family and for the child,” Krystal said.
“We really wanted to join the alliance as an opportunity to make improvements. It specifically will help us to enhance our quality of care, smooth those transitions, and enable staff to work at the highest level of practice.”
Last year, Southlake saw 20,000 pediatric patients in its emergency room and admitted 438 children to its neonatal intensive care unit. The hospital’s pediatric clinic saw nearly 3,800 visits, and 1,200 children attended its pediatric oncology satellite clinic.
The Tuccis noted that they sometimes have to leave their community for Max’s care, including visits to Toronto’s SickKids hospital for such things as specialists appointments, but much of what the family requires is delivered locally.
“In many instances, Southlake doctors will consult with SickKids and leverage their specialized expertise, and we avoid a trip downtown to adjust medications,” Tucci said.
This kind of collaboration with the alliance is anticipated to improve the level of service available closer to home, and provide Southlake with greater access to the expertise and knowledge of clinicians at specialty children’s hospitals, Krystal said.
Kids Health Alliance interim executive director Larissa Smit said the Southlake team is engaged and already a contributor to its network of partners.
“We look forward to Southlake’s input since we know that you put a lot of work and strategic thinking into your Ontario Health Team application,” Smit said.
The current focus of the alliance is on delivering evidence-based care and strengthening pediatric quality and safety, and coordination in community emergency departments, as well as neonatal intensive care units, said Smit.
Partners will develop and roll out best practices in clinical care and share specialized pediatric resources and expertise. The alliance also plans to continue to grow the network to include organizations across the health-care field to provide patients and families with more seamless transitions between health-care providers.
Southlake aims to build on its ongoing efforts to bring high-quality children’s services to northern York Region and south Simcoe Country, including:
- A pediatric oncology Group of Ontario satellite clinic
- A level 2C neonatal intensive care unit
- Regional child and adolescent mental health services
- Regional child and adolescent eating disorders program