I don’t know if most parents of kids with developmental or intellectual disabilities remember, as clearly as I do, the day a doctor finally put a name to problems we’d seen in my youngest daughter but so far been able to explain away.
My beautiful Mary, who was born in 1987, was a week shy of 3, and we were at Oregon Health & Science University in Portland when, after what seemed like hours of testing, a doctor told us she had Williams syndrome, a genetic condition that is caused by the spontaneous deletion of 26 to 28 genes on chromosome 7 — though that hadn’t been discovered at the time. It occurs at conception in either the egg or sperm. It’s not particularly common, one in every 10,000 live births.
There were no pediatricians who specialized in serving kids with developmental disabilities in Bend in the mid-1980s, nor, as nearly as I can tell, anywhere else. The term “developmental” or “developmental-behavioral” pediatrician hadn’t been coined, and, in fact, it didn’t become a recognized specialty until 2002. A developmental pediatrician is one with advanced specialty training in the physical, emotional, behavioral and social development of children, and there are none in Bend. Of the more than 118,000 pediatricians in the U.S. in 2016, only about 800 were developmental specialists.
Our local lack may change, if Sondra Marshall, a Bend psychologist, has her way. Marshall, whom I’ve had the pleasure of knowing since Mary was young, was a driving force behind the creation of St. Charles’ Programs of Evaluation, Development and Learning (PEDAL) clinic, which specializes in diagnosis, assessment and intervention for children and their families.
A developmental pediatrician from OHSU provides services for the clinic.
But, Marshall says, while that’s good, the region could use one of the specialized children’s doctors of its own. We’re big enough, for one thing — experts say there should be one developmental pediatrician for every 150,000 residents, and Deschutes County alone has roughly 192,000 residents.
So what would the developmental pediatrician provide that we don’t have now?
For one thing, having a doctor here full time would help the local health care community standardize services for children with intellectual and developmental disabilities. That, in turn, would help raise the treatment bar for the group, surely not a bad thing.
Drawing a developmental pediatrician to the area isn’t a slam dunk, unfortunately. Because their patients have high intensity and complex needs, they see far fewer patients than other doctors do. And that means, if we’re to enhance the care for our children, the community must demonstrate it’s willing to help draw and keep a specialist here.
I hope we step up.
Discovering your child has an intellectual or developmental disability can be scary business. Having to travel to Portland makes it even scarier, and knowing there’s a local doctor available both to discover just what’s wrong and help get everyone over the worst humps would be wonderful.
Local physicians are apparently supportive of the idea, as is the St. Charles Health System. But it will no doubt take more financial support than those two groups can provide to hire and keep a specialist in Central Oregon.
Fortunately, the hospital’s foundation no doubt will help, and Marshall, who’s truly passionate about the need to bring a developmental pediatrician to the area full time, is happy to talk to folks to explain, no doubt far better than I’ve done, what the specialist would bring to the area and why that’s so important. Her telephone number is 541-706-6312, if you want to know more.
Meanwhile, I know for myself that the presence of a developmental pediatrician close at hand would have made Mary’s diagnosis far less scary than it was at first.