WATCH: An Ottawa family is reaching out to the world to try to find a cure for their baby son’s rare disorder that leaves him unable to open his mouth. Shirlee Engel has the story.
Wyatt is a blue-eyed, bubbly, 11-month-old baby. But the Ottawa boy suffers from a rare disease that locks his jaw, stopping him from eating, drinking and speaking.
His mom Amy Miville knew there was a problem right away.
“It was right when he was born. It’s part of the nurse protocol to check for the palette and she tried to insert her fingers into his mouth and she couldn’t,” Miville told Global News.
That same day, the mother and son were checked into the Children’s Hospital of Eastern Ontario.
Wyatt spent three months there as doctors uncovered the baby’s rare disease.
He was born was congenital trismus, which has locked his jaw, according to Dr. Kheirie Issa, a CHEO paediatrician specializing in complex care.
Watch video: The cause of an Ontario baby’s rare condition is puzzling doctors. Crystal Goomansingh reports.
Trismus is a condition that restricts movement in the jaw. Lockjaw is one form.
“[The disease] is pretty rare because obviously when we first met Wyatt early on…there was barely any literature for congenital trismus,” Issa said.
Through genetic testing, the doctors were able to rule out any other syndromes that might be affecting the baby’s health. No one knows what’s causing the trismus.
Since his birth, Wyatt has been feeding through a nasal gastric tube. He has trouble moving his facial muscles, and his eyes don’t always blink at the same time, Miville said.
He’s not able to swallow properly either – his parents are constantly watching him to make sure he doesn’t choke on his own saliva or block his airway.
The parents make sure an adult is always around him and within arm’s reach – his equipment to help clear his passageway is also right beside him, too.
Wyatt also receives the help of a string of specialists: ear, nose and throat doctors, a physiotherapist who conducts exercises on his mouth twice a day, and geneticists and neurologists. The baby is also learning sign language to help him communicate.
Because it’s hard to tell what’s causing this, Issa doesn’t know if this will be a lifelong condition Wyatt will have to face. It could be the joint itself or the muscles around his face, for example.
Without a diagnosis at first, Wyatt’s parents, Amy and Andrew, felt they were “standing still.”
“Nothing was getting done because we were only treating the symptoms. We weren’t finding out the answers to why it happened,” Amy told Global News.
For now, his parents launched the website whatswrongwithwyatt.com, in hopes of finding answers and reaching out to kids around the world who may have a similar condition.
Read his full story here.
© Shaw Media, 2014