Born with DiGeorge syndrome, Peyton Kaehler is missing part of chromosome 22, causing a host of issues. She must travel with her family every two months to get expert medical care. A team of area health-care providers is hoping to change the situation for Peyton and other children with a local dedicated medical center.
Jason Kaehler and Kara Jenkins enjoy morning coffee and the antics of their 18-month-old daughter, Peyton. The couple travel from their home in Waitsburg to Spokane every two months to seek the specialty medical care their child needs.
WALLA WALLA - Kara Jenkins' life is ruled by medical appointments. Her family's routine pivots on road conditions, dependable transportation and the health of their little girls ... one in particular.
If she and Jason Kaehler are lucky, the couple can get their daughter Peyton into several specialists in one or two days, meaning home life is that much less disrupted, the Waitsburg couple said.
Still, about every two months, the family is on the road, headed to Spokane and beyond to take the 18-month-old to see as many doctors as there are fingers on her tiny hands, or nearly so.
There's the immunologist, pulmonologist, ophthalmologist, ear-nose-throat specialist, hematologist, endocrinologist ... "I know I'm forgetting someone," Jenkins said with a laugh.
Her youngest child was born with DiGeorge syndrome, a disorder caused by a defect in chromosome 22, according to the Mayo Clinic. The syndrome can cause a host of problems, including heart defects, poor immune system function, cleft palate, complications from low calcium levels in the blood and behavioral disorders.
Jenkins and Jason deal with Peyton's medical issues continually and often far from home, due to a lack of specialists in the area. The situation keeps Jenkins from being able to work - there's not only the travel but the need to keep Peyton's immune system protected from any onslaught of communal germs - and takes the couple away their oldest child, 5 year-old Madison Kaehler.
And her baby isn't going to outgrow the diagnosis, Jenkins pointed out. "There's such a broad spectrum on how affected they can be."
The paucity of sub-specialists for Walla Walla kids is a situation Dr. Joseph Wren and others are hoping to change.
Wren, a pediatrician with Adventist Health Medical Group, has cared for Peyton since she was born. It's taxing to send families for care three or more hours away right after they've been plunged into all that "severe" news brings, he explained.
"Parents, when they get the diagnosis, are in shock already. Then to find out, on top of that, that we can't meet all the needs of their child in the community, it is difficult. And once they start navigating the waters of all those appointments, it's more difficult ... the task becomes very daunting."
He and a group of equally passionate people have teamed together to create a visioning group for an idea currently titled "Walla Walla Children's Center."
The concept is a child-friendly medical facility dedicated to giving patients with special medical and developmental needs the services they require. In their home town, or within easy distance -not hundreds of miles away.
Such a center would provide developmental screenings, therapies such as physical and behavioral therapy, parent support services and case management.
The proposed facility would do referrals and health interventions for kids. What it would offer most, however, is a chance for area families to treat their special-needs kids while maintaining a life. Wren pointed out. "People have lost their jobs because of care and travel and (services) coordination for their kids."
About 12 percent of the children living here, 1,500 or so, would directly benefit from a medical "village," he said. His vision includes a brick-and-mortar site, everything under the same roof and perhaps a day care center so siblings can be accommodated. An outdoor activity center, pediatric dentistry and psychiatry, as well as space for telemedicine visits between patients and far away specialists are part of the early blueprints.
Right now, local parents have to coordinate everything for their children's care, which is a consuming and never-ending task. An on-site care coordinator at the medical center would be integral in helping families gain time to be, well, a family, the doctor noted.
The American Academy of Pediatrics agreed the concept is worth developing, granting the group $12,000 to explore and plan the Children's Center over the course of a year.
Wren and his team are using the time to pick the brains of doctors, social service and health officials, and take the pulse of local parents like Jenkins and Kaehler to design future services. The energy that can come from pairing up all those folks is invaluable for his project, Wren said. "The next step is focus groups."
The Waitsburg family is more than ready for the idea to grow legs. Peyton began traveling for medical care before she was 24 hours old and hasn't stopped, although frequency of trips has dropped.
Nonetheless, those impact everything, Jenkins said.
"Right now I worry about taking a job and then saying ‘Oh by the way, I have to take a couple days off every couple of months.' It's not very fair."
As a single-income household, the Kaehler family must save for the Spokane trips and will eventually need to travel to Seattle Children's Hospital, which Wren refers to as the "mecca" for specialty services.
"If we didn't have to go," Jenkins said, "it would mean that we could focus on putting money away for the girls, for going on vacation or just to build a nest egg."
As well, Madison enters the public school system next month, which presents a new slant on appointment planning, her mother added. "Do I sacrifice by taking her out of school or do I leave her with friends? Neither Jason or I have family in Waitsburg."