White Coat, Black Art

How complex care services delivered to rural areas became a 'life-changer' for this family

The Tucker family lives in Orillia, Ont., whose hospital is home to a clinic specializing in complex care for children living in remote parts of Ontario.

'I was feeling like half of our life was being spent in hospital,' father says

Jason Tucker and Lisa Tucker with their son, Ridley, and daughter, Abby. Abby was born with two rare genetic conditions called Cornelia de Lange Syndrome and Mounier-Kuhn Syndrome, requiring around-the-clock care. (Dr. Brian Goldman/CBC)

Jason and Lisa Tucker remember the long costly trips they would have to take between SickKids Hospital in Toronto and their Waterloo, Ont., home to care for their then-infant daughter, Abby.

"I was feeling like half of our life was being spent in hospital," said her father, Jason.

Abby was born with two rare genetic conditions called Cornelia de Lange Syndrome and Mounier-Kuhn Syndrome, requiring around-the-clock care.

Her medical issues back then included breathing problems, difficulty swallowing food, heart problems, physical deformities and developmental delay.

A few years later, the family moved to the smaller town of Orillia, whose hospital is home to a clinic specializing in complex care for children living in remote parts of Ontario.

Abby Tucker, 17, with her doll named Promise. Abby likes to take care of her just like a real person. (Dr. Brian Goldman/CBC)

The team of pediatricians at Orillia Soldiers' Memorial Hospital (OSMH) help administer much of Abby's care locally.

They communicate with and receive guidance from SickKids specialists through email, phone calls and teleconferences.

It was an absolute life-changer for us to be involved with a program like this.- Jason Tucker

It has helped reduce the number of times Abby and her parents have to make the long trek to SickKids. When they still need to go there, the clinic helps to ensure they see multiple specialists in one visit whenever possible.

"It was an absolute life-changer for us to be involved with a program like this," Jason told White Coat, Black Art host Dr. Brian Goldman.

"We can drive to our hospital 10 minutes away, park in the lot, walk in the door … and have a nice informal meeting with the doctor via teleconference and be out in half an hour and be home, or have Abby back at school."

The complex care 'quarterback'

Dr. Michelle Gordon, director of OSMH's complex care clinic for medically fragile children, described herself as the clinic's "quarterback," helping to build diagnoses and treatment plans for Abby and the approximately 50 children who are enrolled in the program at any one time.

"The ability for us to deliver more of this care close to home, to try ... to hospitalize them closer to home, I think, makes a huge difference," said Gordon, who is also chief of neonatal and pediatric medicine at the hospital. 

Gordon recalled another young patient, who lived nearly an hour's drive outside of Orillia and had complications after an organ transplant. The first visit to the OSMH clinic was daunting as the staff had never dealt with the high level of complexity needed to care for this child, she says. But they persevered, consulting with the Toronto-based transplant team, learning as they went.

Dr. Michelle Gordon, director of OSMH's complex care clinic for medically fragile children, helps build diagnoses and treatment plans for Abby and the approximately 50 children who are enrolled in the program at any one time. (Dr. Brian Goldman/CBC)

Eventually, Gordon and her staff created a detailed treatment plan, which could be implemented by health-care workers not accustomed to patients with extraordinary medical needs.

"She wasn't well enough to come directly to us, and she landed in this little level one hospital," Gordon said. "They knew they had a script of exactly what they were supposed to do the moment she landed in their doorway. And that saved her life a number of times."  

Community-based services

Reseachers have examined the benefits of complex care delivered locally. A two-year study of community-based complex care practices in Ontario, published by BMC Health Services Research in 2012, found that families enrolled in these programs needed an average of five fewer trips to SickKids Hospital a year.

It also found a decrease in time away from work, pharmacy costs and overall health-care costs for families. Children were also less likely to be hospitalized, which eased costs on the health-care system itself.

Dr. Michelle Gordon and Joanna Soscia, pediatric nurse practitioner at the complex care clinic at OSMH. (Dr. Brian Goldman/CBC)

As the largest hospital in its area, OSMH also provides complex pediatric care to surrounding towns, including Collingwood, Bracebridge and Parry Sound.

"Children who need non-urgent consultation come down to us, and then somebody from my group goes out to each of those centres and offers consultations in each of those communities," Gordon said.

Another complex care program for kids was established at Brampton Civic Hospital around the same time as Orillia's OSMH. But the Brampton clinic closed after the two-year pilot ended. Gordon says colleagues are working to establish similar programs in other remote Ontario areas like Timmins, Sudbury and Sault Ste. Marie.

First diagnosis

Before the Tuckers connected with Gordon 14 years ago, they didn't have a diagnosis for Abby's condition. Gordon and her team were key to finding the right specialists at SickKids to provide the information that the parents couldn't track down themselves.

"Immediately, we were seeing cardiology [and] respirology. Not long after we were down to see immunology, endocrinology," Jason recalled. "The '-ologies' kinda keep going."

Abby and her parents discuss her care with Dr. Gordon and pediatric nurse practitioner Joanna Soscia at OSMH. (Dr. Brian Goldman/CBC)

Gordon connected the family with a gastroenterologist, who quickly recognized the calling cards of Cornelia de Lange Syndrome in Abby, helping to nail down the first diagnosis.

"It was really helpful having that not to be a mystery anymore," she said. "I think it would be very naive of me to say that it's been without its challenges … but I think we've done pretty well getting her connected to services here."

Aging out

Today, Abby is 17 years old. Once she turns 18, she can no longer be treated under the pediatric complex care program.

I would feel better knowing she lived here than living in a big city centre where she's going to get lost in the numbers.- Jason Tucker

Gordon has already begun work connecting her parents with the right adult-care specialists for the next phase of her life.

"I've been choosing carefully who I want to send her to, and I know I'm sending her to people for whom medicine is a passion and not just a job," she said.

Abby's parents hope that she'll be able to live a long life with a measure of independence — something they believe will be easier in Orillia thanks to the foundation set by Gordon's team.

"If I wasn't here tomorrow, I would feel better knowing she lived here than living in a big city centre where she's going to get lost in the numbers," Abby's father said.

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