Another Orphan Medical Condition

"We have no idea how he's going to progress. We can understand the family's frustration, but we don't know the diagnosis or the underlying condition."
Dr. Kheirie Issa, pediatrician, Children's Hospital of Eastern Ontario

"We don't know where (the condition) is going to go. Is it going to affect his speech? And how much? So he needs to be able to express himself."
"We're the only kind of people we know personally who have a baby being fed through a tube, so it's interesting."
"It's been a roller-coaster with ups and downs. You're so happy he's here but then you almost lose him. Sometimes you ask yourself, why me? But then it is what it is and we've made do. We have a lot of family and medical support. It's about perspective at this point."
Andrew Scott, Amy Miville, parents of Wyatt Scott, 9 months

Nine-month-old Wyatt Scott, with parents Andrew Scott and Amy Miville at Children’s Hospital of Eastern Ontario on Thursday, suffers from a condition that has locked his jaw, preventing eating, drinking and speech.    Photograph by: Hannah Yoon , Ottawa Citizen

 

Two young parents of a very unusual infant have set up a website named What's Wrong with Wyatt? On the site there are entries explaining the baby's medical health condition, and it tracks the family's appointments with Wyatt, and their hospital visits. Wyatt's mother, Amy, has received, she says, dozens of emails from nurses offering advice. And from parents who have had the unusual experience of their babies as well, having to be nourished through feeding tubes.

Every parent naturally enough thinks of their offspring as being special, and they are, to them. But the child that Andrew Scott and Amy Miville have is quite, quite special. So much so that doctors are puzzled over what it could conceivably be that has caused an extremely rare health condition. The baby suffers from a congenital trismus, where his jaw is locked, effectively preventing him from fully opening his mouth to eat, drink and speak.

The underlying cause is unknown. The condition has an effect on his facial musculature, on his ability to blink his eyes and to swallow. He experiences copious oral secretions, and thus drools often. He is fed through a nasal tube, since his birth. His mother is anticipating that it will soon be replaced with a tube inserted directly through his abdominal wall into his stomach. And they have been busy teaching their very young son sign language as a method of communication.

This is a communication process they began when the baby was only two months old, and he has the capability of some basic signs. "The website is a way to get his story out there. It's not enough through Facebook", his mother explained. "You can only tell so much through it." The longest they've been at home with Wyatt since his birth, as a family, has been for a six week period. Usually two or three weeks is the average duration, before they must return to CHEO.

In January Wyatt was unable to open his mouth after vomiting. He was rushed to the hospital, because he then stopped breathing. To the immense relief of parents and doctors the child hadn't suffered brain damage. Who wouldn't ask 'why me'?