By Taylor Knopf
Three-year-old Ryan Sutton rolled into UNC Orthopedics holding his stuffed dog Marshall, wearing his firefighter PAW Patrol hat and double leg casts.
He doesn’t say much, but leading up to this visit he told his grandmother Vicky Sturgill, “casts off!”
Ryan is somewhat of a medical mystery to Duke and UNC specialists.
His diagnosis?
“They don’t know,” Sturgill said. “The doctors are discouraged.”
Ryan has been in and out of doctors’ offices from the day he left the newborn ICU at Duke. His patient records detail a long list of symptoms and diagnoses, including nail-patella syndrome, fever convulsions, poor muscle tone, anomaly of chromosome pair 19 and congenital eyelid drooping.
The family lives in Halifax County, and transporting Ryan to get the care he needs has become a full-time job for Sturgill and his mother McKenzie Sutton. They load their Toyota Corolla with snacks and activities before making routine all-day trips to Chapel Hill, Greensboro and Oxford for Ryan’s appointments.
Not only are Ryan’s medical issues complicated, but the situation is worsened by the limited number of resources and specialists in rural North Carolina.
Sturgill said they’ve put more than 40,000 miles on their car since they bought it new in the spring of 2016.
Lack of specialists
Sturgill said she wishes there were more specialists in their area. Not only is driving to these appointments time consuming, but it’s expensive for Sturgill and her daughter Sutton who live together on disability on a tight budget.
They each have their own health issues also.
Sutton said she’s had to forgo refilling one of her own prescriptions recently to pay for gas to take Ryan to an appointment. While they receive gas reimbursements from social services workers, Sutton said those payments can take four to eight weeks to process.
Sturgill says she’s considered moving closer to the Triangle, but it’s expensive. Also, the majority of their relatives live in Halifax County and they are a close-knit family.
Though Ryan’s ailments are unusual, this family’s story is not uncommon. Sturgill said she often runs into patients in doctors’ waiting rooms who travel equal or greater distances for medical care.
Almost half of the 70,000 inpatients at UNC Rex and UNC Medical Center last year came from outside Wake, Orange and Durham counties, according to Alan Wolf, media relations manager for UNC and Rex healthcare.
“UNC Medical Center has long been the safety net hospital for North Carolina, and treats patients from all 100 counties – for cancer, heart ailments, burns, children’s diseases, etc.,” Wolf said.
“In recent years, through its affiliations with smaller community hospitals such as Nash, Wayne, Pardee, High Point, Johnston and others, UNC is treating more patients from those regions who need specialized care at UNC Rex or Chapel Hill,” he added.
For families like Ryan’s, navigating all the appointments and services is a challenge.
Organizations such as like the Family Support Network are there to help. The group promotes and provides support for families of children with special needs with 11 regional affiliates across the state.
Tamara Norris, the director of the Family Support Program, said her organization matches parents seeking information and support with people who have been through the convoluted system before ahead of them. There are 800 parents like this who have been through support training and advise others.
“The services for children with disabilities are often a complex array of services,” Norris said. “It’s daunting to navigate that complex service system.
“We help families understand what services are available and what’s out there.”
Family Support Network toll free number: 1-800-852-0042
The need to leave
Brian Harris has been the CEO of Roanoke Rapids-based Rural Health Group of NC for 13 years and said he spends a lot of time on the phone greasing the wheels for the group’s 40,000 active patients to see specialists.
“For people who don’t have the insurance to help with costs of seeing a specialist, I have to sometimes convince the provider to see our patients,” he said.
Additionally, he said rural North Carolina is not a place where people can stay in their community for care. His group refers patients to specialists in the Triangle all the time. He does what he can to get them appointments and the group can even help coordinate transportation.
“But there is a burden for people who need specialty care. They have to take time off work, and driving to Chapel Hill is an all-day adventure,” he said. “They are gone all day for an hour appointment.”
Harris said the specialists in the northeastern part of the state are aging, and there is no one in the pipeline to take their place.
Occasionally, specialists such as cardiologists come for clinics, he said.
“I advocate all the time. Health care is a human right. The richest nation in the world cannot figure that out,” Harris said. “This is a travesty and one of the bigger social justice issues we have.”
Economics of rural health
The problems facing rural health are multi-faceted. To get physicians and particularly specialists to an area, the population must support it. Unfortunately for many rural counties, the population is dwindling and aging. The infrastructure is crumbling and the economy lacking.
State lawmakers recently turned their attention to issues surrounding access to health care in rural parts of the state. The general consensus was that economic development and rural health care go hand-in-hand.
Job creation depends on a good education system, physical and digital infrastructure, and a robust health care system, John Coggin, an economist and advocacy director at the North Carolina Rural Center, told lawmakers earlier this month.
“New entrepreneurs need access to health care in order to take the risk of opening their own business,” Coggin said. “A community that doesn’t have a good health care system isn’t going to get to first base in recruiting new companies.”
Coggin added that rural hospitals — which are already struggling or closing — are on “razor-thin” margins and cannot hire more people or add specialties.
He said that large health care systems moving to remote, rural areas of North Carolina will never make economic sense.
Coggin said he believes telemedicine is the future of health care delivery in rural America.
“It’s going to be one of the most efficient ways of targeting those areas,” he said. “The problem is when you look at the areas that need those telemedicine services the most, they are almost an exact match with those areas that lack the broadband access necessary to deliver them.”
He told lawmakers that broadband is “the” rural economic development issue of our time.
“It has profound implications for health care, education, business development and public safety,” Coggin added.
Access to broadband won’t solve all of the problems, he said, but it would have an immediate impact on rural health care access.
Casts off, braces on
At UNC Orthopedics, Ryan got his wish. They took the casts off in November.
The nurse put him up on the table as he held onto his plush dog Marshall for support. At first he was curious and sat up watching as the nurse cut the casts. Half way through he panicked and had to lie down.
Once the casts were off, he hugged his mother tightly and said, “I love you.”Afterwards, he sat in his wheelchair examining the bandages covering the incisions on his knees. In August, he had surgery on both knees in order to straighten his legs in an effort to help him walk.
Nail-Patella Syndrome can cause underdeveloped knee caps. And in Ryan’s case, his elbows and legs appear to bow rather than bend at a right angle.
When the doctor came in to examine his legs, she said he would need physical therapy to strengthen his leg muscles as he learns to walk. Initially, she suggested a place in Greenville, and Sturgill and Sutton both sighed.
That would be another three hour round trip.
Later, they found a physical therapy provider for Ryan 15 minutes from their house and Sutton was thrilled. This is the first appointment Ryan has that doesn’t require a long car trip.
Before they left, he was fitted with a back brace and two leg braces. As the technician began explaining how they worked, Sturgill and Sutton unanimously said they already know. This would be his fourth pair of braces.
It was a good day for Ryan. He tolerated the brace fitting and asked the technician questions. He waited patiently playing games on an iPhone.
“He’s a trooper,” Sutton said. “This child has been through more than I ever thought. He’s passed with flying colors.”
“He’s so patient,” Sturgill added. “He’s a sweetheart. It hurts to see him go through this.”
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