November 15, 2009 By Katherine Hannon for the Mail Tribune
It's time for a new fashion statement for Kassidy. The petite 9-year-old is trading in patriotic stars and stripes for a retro floral motif on the rigid plastic orthotics that support her legs from feet to knees.
Kneeling before her, Don Hayhurst fastens straps and checks the fit. Hayhurst is a certified prosthetist-orthotist, but Kassidy knows him as the wry man with the dry wit who insists on calling her "George."
Kassidy had surgery in August to strengthen a cracked hip bone and lengthen calf muscles. She will wear the orthotics for about a year.
"She has spastic diplegia, a form of cerebral palsy, from a seizure at birth," explains her mother, Ginger. "We adopted her from Korea when she was 8 months old. We knew when we got the call that she had medical problems, but we said, 'OK, send herover." Kassidy, clearly fond of this story, asks her mother to repeat the best line. "We said, 'OK, send her over.' "
Bringing the hospital to you
Kassidy is one of 114 children from Southern Oregon seen at an Oct. 31 outreach clinic by orthopedic specialists from Portland's Shriners Hospital for Children. The clinic was held at Rogue Valley Medical Center's rehabilitation center in Medford.
For these children — many of them in wheelchairs, many of them bearing surgical scars — Halloween generosity didn't wait until dusk. A team of 16 medical specialists traveled 250 miles to provide thousands of dollars of medical treatment and equipment — all free of charge.
"Families at outreach are the happiest of any we see. They don't have to travel to Portland, it's Saturday, they don't have to miss work. It's one of the best things we do — bringing the hospital to you," says Dr. Michael Aiona, chief of staff.
Dr. Aiona has been with the Portland Shriners Hospital for 23 years. "It's the best medical philanthropy in the country. It's a great mission, but not enough people know about it."
Shriners doctors treat a range of disabilities: scoliosis, kyphosis, spina bifida, cerebral palsy, cleft palate, muscular dystrophy and deformities of the hips, hands and feet.
"Along with the underlying diagnosis, we have to understand what's going to happen over time," says Dr. Aiona. "There are conditions a child may not have at age 5, but over time might develop."
Brenda's son, Joey, 8, was born with Down Syndrome and club feet, which were treated with serial casting when he was an infant.
"Dr. Aiona told us that with Down Syndrome you have to watch for neck problems that can develop," says the Medford mother. "They could have fixed his feet and been done with him, but Joey is a part of them. They'll continue to keep up with him until he's an adult. I've heard people say, 'Once a Shriners baby, always a Shriners baby.' "
Mobile MASH unit
The outreach team left Portland early Friday morning like a medical Noah's ark — two doctors, two residents, two nurses, two medical assistants, two radiology technicians. The team is rounded out by experts in orthotics, prosthetics and physical therapy.
"Outreach is fantastic. We're like a mobile MASH unit. We understand the financial drain on families who make the long haul to Portland," says X-ray secretary Ralveen Schrock.
Patients requiring X-rays are seen at RVMC before arriving at the rehabilitation center on Black Oak Drive. Families are escorted through the hospital by gentlemen in distinctive hats — the maroon fez that signifies members of the Shriners fraternal order. Local members from the Hillah Shrine Temple volunteer at each outreach clinic, providing assistance, support and refreshments.
Saturday started early for Shriner Jack Adams. By 6 a.m., the 2008 Potentate was organizing volunteers and setting up the two locations.
"When you walk in the hospital and see smiles on children's faces, when you see them accept what they're going through, you just want to make them as comfortable and happy as you can," says Adams.
There's no smile brighter than that of Stephan of Chiloquin. The 12-year-old has little verbal language, but his eyes reach out eagerly and his smile is heart-melting. Born with cerebral palsy, Stephan's brain was injured by a prenatal stroke. He's been to Portland twice for surgery.
His mother, Sylvia, describes their last trip to Portland. "We took Amtrak up, but Shriners paid for a cab ride all the way from Portland to Chiloquin. It was over $500.
"Stephan was treated like a king. He came back with all kinds of loot; a remote-control truck, a Walkman, Beanie Babies. It was awesome."
Stephan, with his eyes and smile, makes it clear he agrees.
The hospital that gave us so much
Mike Mehl, rehabilitation manager for RVMC, coordinates the Black Oak facility. His daughter, Nisha, 30, was a Shriners patient until she was 21. Dr. Aiona performed spinal surgery on her when she was 17 to correct severe scoliosis.
"My daughter maintains contact with Dr. Aiona, Don Hayhurst, people we've seen over the years. She usually comes in the afternoon to say hello. Because of our own personal Shriners experience, I'm happy to still help out."
Peggy is another former Shriners parent. Her daughter, Joah, 32, was treated with a corrective device after being diagnosed with hip dysplasia as an infant.
"Joah did great," says Peggy. "She was able to do sports, and she has four children. I've volunteered for 20 years helping with registration. It's really rewarding to give back to the hospital that gave us so much." Her eyes fill with tears when she recalls her daughter's hospital visits. "Seeing children so much worse off than my own, I got over my pity party pretty quick. I remember when Joah got older ... she said, 'Mom, I don't need to take up their time.' "
A visit to Shriners does puts things in perspective.
"I remember our first couple of visits," says Ginger. I just about left in tears. I saw the strongest moms on earth in that waiting room."
Don Hayhurst is a Shriner himself. "Lots of Shriners find the hospital depressing. But the kids don't allow it — they're full of smiles because here there are kids just like them. For them, the hospital is not a depressing place."
'I know he's in good hands'
By mid-morning, the waiting room is full. The aisles are clogged with wheelchairs, but no one minds — where else can a child in a wheelchair blend in.
Beyond the waiting room, there's a swirl of activity. In the central physical-therapy area, doctors, residents and nurses crisscross the room as they evaluate patients, study x-rays and perform exams.
The room where orthotics and prosthetics are fitted is hectic. The three CPOs are in constant motion; taking plaster molds of legs and feet, bending to adjust devices, shaving down orthotics on a loud, grinding sander.
While Kassidy takes laps in her walker, a rhythmically rocking child accidentally bangs his head against the wall and begins to cry. Across the room, a mother spoon-feeds her teenager a snack the consistency of baby food.
CPO Sabrina Huston carefully helps 11-year-old Cameron from his wheelchair to tentatively test his new brace. Despite the noisy chaos, when Huston leans in to support Cameron's weight, the room seems completely quiet.
There's one last stop before patients depart — cookies and punch provided by the ladies auxiliary.
Lori's three boys are happy for the handful of cookies. Kole, the eldest at 13, had metal rods taken out of his leg on Tuesday. The Medford outreach saved the Eagle Point family a second trip to Portland in one week.
Kole confidently discusses his treatment. "Having the rods out didn't hurt. My cast will stay on for four months. I'm supposed to walk with it."
A veteran of 10 surgeries, Kole brushes away any talk of nervousness before undergoing surgery. But his mother tempers his bravado.
"Right before he goes under he's a little scared. ... Shriners is amazing, I couldn't ask for anything better. When my son goes under, I know he's in good hands."
'We just focus on the patients'
Shriners hospitals began in 1922 in response to the polio epidemic. Since their inception, they have treated more than 900,000 children. Their commitment always has been to provide quality medical care for children without financial obligation to their families.
"We don't charge patients," says past hospital board chair Jim Westerfield of Medford. "We don't care if you have insurance or assets, if you're a rocket scientist or a gas station attendant."
"It's a great mindset that our doctors don't think about insurance," says radiology manager Scot Duncil. "It shouldn't be an issue. Families shouldn't be stressed by that burden. We take that out, we just focus on the patients."
The hospitals are supported by an endowment fund built on donations and bequests. The budget to run all 22 hospitals is $7 billion. Portland's annual expenses are $23 million.
The economic downturn has hurt the organization. "The endowment fund has lost a lot of value," says Westerfield. "We're trying desperately to cut the budget, but not discontinue any services."
Hard hit are the outreach clinics. Clinics in La Grande and Bellingham, Wash., were eliminated several years ago. Anchorage, Alaska, has been cut to two annual visits, and Medford is being reduced from four to three clinics per year.
'They are just so kind'
Gratitude is the word of the day for families attending the outreach clinic.
"I'm a single foster parent," says Sandy King of Grants Pass. "For me to go to Portland is really hard with a handicapped child. This is easier for the children, they get really worn out on a trip."
Judith Anderson's daughter, Nina, has had nine surgeries in her 19 years, most recently for scoliosis.
"There's $120,000 worth of hardware in her back," says Nina's mother. "All that was included, plus the hospital stay. I'm so grateful for all they've done, for the steps they've taken for a better quality of life for Nina for as long as she is alive. They are just so kind."
The admiration between patients and staff is mutual. Dr. Aiona works through his heavy patient load with quiet efficiency, but his emotions are deep when he speaks of the families he meets.
"I have so much respect for our parents, for how hard — how impossible — their jobs are."
The medical marathon seems entirely worthwhile to the tired Shriners staff. Radiologist Scot Duncil sums up their feelings with a story about a chipper "Morning, Mister!" greeting from a little boy with no legs.
"We're here to help him improve his life, but he warmed up my day from the inside out."
For more information on Shriners Hospital for Children or to make a donation, visit www.shrinershq.org.
Katherine Hannon is a freelance writer living in Medford. She can be reached at katehannon17@yahoo.com.
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