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This timeline is where you’ll spend most of your time, getting instant updates about what matters to you. Tweets not working for you? Hover over the profile pic and click the Following button to unfollow any account. Say a lot with a little When you see a Tweet you love, tap the heart — it lets the person who wrote it know you shared the love. Add your thoughts about any Tweet with a Reply. Find a topic you’re passionate about, and jump right in. Get instant insight into what people are talking about now. Get more of what you love Follow more accounts to get instant updates about topics you care about. See the latest conversations about any topic instantly. Never miss a Moment Catch up instantly on the best stories happening as they unfold.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. Hartley has advice for other children undergoing treatment: 'If it's a big procedure, you're going to be asleep, so it's really really fast and you won't feel it.' 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."
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. Dr. Paul Wales is 'a really cool guy and he saved my life,' Hartley says. 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." Hartley says he's thinking of becoming a stay-at-home dad when he's older. 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. 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. Dr. Paul Wales is the co-ordinator of the Group for the Improvement of Intestinal Function and Treatment (GIFT). "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. Hartley being treated as a baby. 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. 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. Hartley says he pretends to be Wolverine for every surgery, because he is not afraid of anything. His other advice to youngsters heading to hospital is to stay calm and to bring a book. "I finished a whole chapter book about dragons when I was here."