'A surgery is not that bad,' boy, 7, says after 16 of them

A seven-year-old Ontario boy who has undergone 16 surgeries to treat a rare intestinal disease is telling other kids to "stay calm" if they are heading to hospital.

Hartley Bernier spent the first 100 days of his life at SickKids Hospital in Toronto and has been back "millions of times" for followup procedures to repair a colon that did not properly develop in utero.

"When I was born, I didn't poo and they found out I was missing part of my bowel," Hartley said, sitting cross-legged on an examination table in the hospital. 

A backpack carrying an IV pump is propped up next to him with a tube running out of the top connecting an ostomy bag tucked inside his pants. 

"I have a stoma now, which is this red kind of blob," Hartley explains lifting his shirt to show off the small opening into his abdomen where the bag rests.  

The Grade 2 student knows as much about his medical condition, called Hirschsprung's disease, as he does about dragons and Lego. He wants other children heading into the operating room to take his advice. 

"If it's a big procedure, you're going to be asleep, so it's really really fast and you won't feel it," Hartley explains. 

"A surgery is not that bad." 

Lucky to be alive, stats show

The gap-tooth child, still waiting for his adult teeth to push through, is a success story at the country's largest children's hospital. 

Hartley says he knows the odds were against him in the early days, and he calls his treating physician his hero. 

"Why? Well he's a really cool guy and he saved my life," Hartley said matter-of-factly. He advises other kids to always say, "Thank you" when the doctor leaves the room. 

Pediatric surgeon Paul Wales politely chuckles when he hears Hartley's comment, and he credits the hard work of his unique medical team.

The interdisciplinary group of surgeons, nurses, nutritionists and other medical professionals has turned the tables on intestinal disease that 15 years ago would likely have killed patients like Hartley. 

"When I started the program, [it] was a 40 per cent mortality rate at SickKids, so about half the babies died, " Wales said from an operating suite in the hospital.

"Most never left the hospital."

Today, the overall mortality rate is five per cent — the result, he believes, of a dedicated team streamlining the care of newborns with severe intestinal problems. 

Patients, parents need coaching  

Wales said his team, created in 2002, is the only one in Canada that is ministry funded, and while other hospitals are adopting the model, none is doing it to the same scale. 

He said liver failure is often the cause of death in children with intestinal disease. Referral for a transplant often comes too late when a patient is seen by many medical professionals.

"When you have a complex patient and numerous cooks in the kitchen, the messaging can be inconsistent, and that can be frustrating." 

Wales said his team, which has several hundred young patients who will be treated until they are adults, has not lost a child to liver failure since 2006.  

"If Hartley were born in another province, we probably would not be sitting here," Daniel Bernier said, helping his son adjust the backpack that holds the IV pump.

The father of three explains how the medical team has taught the family to be expert nurses, able to change IV lines at home and to monitor all Hartley's nutrition.

'Bring a book'

It's been over a year since Hartley's last trip to the operating room, and he and his doctors hope he doesn't have to go back. 

Still, he knows what to expect, especially the part of surgery he says is "the worst."

"Not eating is bad and sometimes I'll fight to get food." Once Hartley  s in recovery, he gets all of his favourite foods, including sushi and pasta.

His other advice to youngsters heading to hospital is to stay calm and to bring a book.