Six-year-old Mattias Thompson loves to play hockey, but he was born with a rare hip disease that is keeping him off the ice. However, thanks to early intervention and surgery, the Grade 1 student from Chilliwack may just have a chance to get back in the game one day.
Mattias is a major Pittsburgh Penguins fan, and loves sports, says his mother Nikki Thompson. While it may be years before he can play hockey, the family is hopeful he will be able to play baseball next year.
Dr. Kishore Mulpuri, the orthopedic surgeon at B.C. Children’s Hospital who performed Mattias’s surgery, said it’s too soon to comment on his long-term prognosis, but said he has a much better chance of a full recovery because of early treatment.
“We caught it very early and that will help him. If he was older he would be more at risk for arthritis. So we want to get it to as normal as we can,” said Mulpuri.
Mulpuri was recently awarded a $450,000 research grant from the federal government’s Canadian Institutes of Health Research program for his team’s project, I’m a HIPpy, which he started three years ago to help children here and in other countries receive early screening and treatment for hip dysplasia and other hip conditions.
Mattias was diagnosed with Legg-Calvé-Perthes disease, which restricts blood supply to the femur, eventually killing the bone. He spent weeks at B.C. Children’s in April having a full hip reconstruction. Preparation for that surgery included five days where for 23 hours a day he had to be in traction with his legs splayed apart.
In the summer of 2018, Mattias starting limping severely and so his family took him to the local hospital in Chilliwack. At first doctors told the family it was a virus that would go away in six weeks. After his limp got worse, they went back to the hospital and a paediatrician took X-rays and then diagnosed him with juvenile arthritis. They went to B.C. Children’s for an MRI and on that night the radiologist called the family to say he doesn’t have arthritis but instead had Perthes disease.
His journey is documented on a Facebook page called Mattias’ Perthes Journey.
He really wants to be able to run and play with his friends, but otherwise he is doing so much better, said Thompson.
“Early detection can really change the outcome for these kids,” she said.
She said the family’s steel business recently held its annual softball fundraiser and raised more than $32,000 for I’m a HIPpy to helps kids like her son benefit from early detection. On Oct. 5, the annual I’m a HIPpy fundraiser gala will take place at the Vancouver Convention Centre.
Mulpuri says if hip dysplasia goes unchecked, many adults develop arthritis and will need hip replacements.
“People don’t realize that every single child around the world should be screened to see if their joints are loose,” he said, adding that roughly 40-50 people per 1,000 people are born with loose hip joints. “If it is picked up early on then they could have a normal life with an early brace treatment. So the key message is we need to get to them early.”
Overall in B.C. the mean age is three months for detection, he said, but in other countries like India and China the age is two to three years, so that means the kids at nine to 12 will be having 15 to 17 surgeries.
“Their entire childhood goes to just surgery after surgery. It affects their mobility and takes their childhood away,” he said.
Mulpuri and his team created the International Hip Dysplasia Registry, which is the largest research and patient registry in the world. The registry is funded by HIPpy, with the goal that this research will help children worldwide.
While early screening is the best method to prevent the burden of hip dysplasia, Mulpuri said there are still other risk factors that need to be addressed like baby swaddling, for example.
“A lot of people wrap the babies tight for comfort, but that puts them at risk of hip dysplasia,” he said,
Other conditions that put kids at risk include being in a breech condition or having unequal leg lengths.
“As soon as we figure out they have a dysplasia or dislocation based on the severity we then treat with a brace treatment, which has over 90 per cent success rate if you treat early,” he said.
Mulpuri advises watching children for signs of hip dysplasia including if they’re having knee pain or walking with one foot turned out. He also says parents shouldn’t worry about getting a hip X-ray or asking their doctor if their baby was screened. At birth, all newborns in B.C. are tested for hip dysplasia, but there is currently no standardized testing and in some countries, little testing at all.
When not properly diagnosed, children can go on to have numerous surgeries and physical limitations that will impact them for life, causing much suffering and significant costs to medical systems, said Mulpuri.
Mulpuri said thanks to the CIHR grant, the support of B.C. Children’s Hospital, donors and volunteers, they are expanding their network, building data and statistics into the database “at an extremely fast pace.”
The financial impact of missed hip-dysplasia diagnosis to Canada and U.S. health-care systems is about $625 million a year, according to Regina Wilken, executive director of I’m a HIPpy.
Mulpuri works with doctors in Canada, the U.S., Europe, China and India sharing the database knowledge and assisting with hip-dysplasia patient surgeries.
He says the ultimate goal is to help all children improve their quality of life.