One of the things worse than finding out your baby has cerebral palsy is not knowing for certain whether he has it.
This is the situation that is frustrating Meg Croken and her husband, Sheldon, about their five-month-old son Nash.
To look at the happy, blond baby, it doesn’t appear that there’s a thing wrong with him – until he is held. Nash is very stiff with what’s known as high muscle tone. He’s also not hitting many of his developmental milestones and is retaining other reflex behaviours that should have already faded away.
Nash’s family doctor, a pediatrician and a neurologist suspect cerebral palsy (CP), an umbrella term that refers to a group of disorders affecting a person’s ability to move. It is due to damage to the developing brain either during pregnancy or shortly after birth.
Cerebral palsy affects people in different ways and can affect body movement, muscle control, coordination, muscle tone, reflex, posture and balance. Although cerebral palsy is a permanent condition, some of these signs of cerebral palsy can improve or worsen over time.
An MRI scan is an essential piece in determining whether Nash’s has CP or some other issue. The problem is, pediatric MRI scans require children to be put under anesthetic and can only be done in B.C. at BC Children’s Hospital. This means extremely long wait lists unless it is the most dire of emergency. For Nash, the wait has been pegged at 27 months.
“This is not OK,” says Meg, “If it is not CP, we need to be moving forward trying to find out what it is. If it is CP, the delay in diagnosis means we have delayed starting physical therapies or other treatments. Every professional I’ve talked to agrees that the earlier the interventions, the better the results, but you can’t get access to many of these services without a diagnosis.”
Croken and her family doctor made attempts to get Nash onto MRI wait lists in Alberta, where there are pediatric MRIs done in Edmonton and Calgary, but with no success.
“I’ve had people say, well be glad your child isn’t being airlifted to Vancouver today for an urgent MRI, but I feel like, to you this may not be urgent, but to me it is. If we wait 27 months, Nash will be two-and-a-half. We will have missed some very important windows. All the research says there are things you can do to have another part of the brain take over some of the damaged functions, but they all say the success rates are much higher if this happens before six months, before a year. So the clock is ticking,” says Croken. “There are also clinical trials for things like stem-cell therapies, but we are not eligible without a diagnosis.”
Never really envisioning herself as an advocate, Meg says, as a mother, she will do whatever it takes to get the best care for her child.
“If earlier treatment means that instead of a possibly wheelchair, he could use a walker, that’s huge for his quality of life.”
As she sits at her sunny kitchen table with Nash in her arms, Meg juggles the phone, as a call comes in from a doctor’s office. She gets transferred around trying to get an answer as to how long Nash would have to wait for an MRI in Alberta or at a private clinic. Now they have been told Nash is not eligible in Alberta and most private MRI clinics will not take pediatric cases due to their complexity and the need for general anesthetic.
“It’s frustrating. I’m not an Albertan, I’m from B.C. I feel like my province should be doing a better job for Nash – for all the kids on that wait list.”
Meg has high praise for her family doctor in Salmon Arm and the Shuswap Children’s Association’s Infant Development Program, which is offering some services to Nash in advance of a diagnosis.
Meg is working with Penny Ogasawara with the Infant Development Program to assist Nash by monitoring his developmental milestones, incorporating muscle development and infant massage techniques, as well as getting information and resources that could help Nash’s condition, regardless of his diagnosis.
“Our saying is babies can’t wait,” says Ogasawara, whose program serves families of children from birth to three years old who are at risk for, or already have, a delay in development. They work with such young children because of research that shows 90 per cent of a baby’s brain development occurs in the first three years of life.
If Nash has to wait the 27 months for an MRI diagnosis, he will be two-and-a-half before a diagnosis could be confirmed. And if it is not cerebral palsy, then additional medical consultations will be needed.
“It’s so hard trying to navigate the system,” says Meg. “You feel so on your own, trying to talk to one booking office here and one specialist’s office there and then a report gets misplaced over here, and you don’t have the right form for something else,” she said. “I really feel I have to advocate for my child and for others like him. It wasn’t really what I had planned, but someone’s got to do this. The system needs to be doing more. Nash deserves more.”