New Clinic Seeking Genetic Answers In Amish Community
July 5, 2002 at 6:02 PM EST - Updated July 3 at 4:16 PM
By THOMAS J. SHEERAN, Associated Press Writer
MIDDLEFIELD, Ohio (AP) - Freida Miller, her hair pulled back tightly under her Amish bonnet, gently cradled her undersized 7-year-old daughter in her lap in a slice-of-America backyard swing.
Kristina's arms and legs droop limply to her mother's sides and her head stays upright only when she is placed between neck supports in a padded walker.
Kristina has cerebral palsy symptoms, juvenile arthritis and glaucoma, which the energetic new doctor in town suspects are related to genetics. Amish have traditionally married among themselves.
Dr. Heng Wang was hired as the first physician of the Das Deutsch Center for Special Needs Children, a clinic dedicated to serving the tight-knit Amish community of northeast Ohio and unlocking its genetic risks.
In mostly rural Geauga County, located between Cleveland and Youngstown, Amish represent about 12 percent of the population but nearly half the local cases of severe mental and physical retardation.
Miller, whose husband, Dan, is a "distant, very distant" cousin, has a relative who lost a nearly blind 5-year-old son to a disorder believed to be inherited. Dan Miller has a mentally retarded sister.
Michael Graf, a genetic counselor at Case Western Reserve University in Cleveland, said marrying a relative increases the risk that both parents will be carriers of a rare gene disorder.
"These rare conditions occur in other populations, but it's so much more rare (elsewhere) because people are spreading the genes," he said.
The Millers have four healthy children, ranging in age from 7 months to 15.
Kristina can't talk or sit up by herself. The first hint of something wrong came one month after birth.
"She started getting fussy," Miller said. "She didn't do things that babies normally do, like reach for toys."
At the Miller home, Wang removes Kristina's lacy sock to check an inflamed foot that appears to be healing. He isn't sure whether the inflammation is related to Kristina's other problems.
The clinic is modeled on a pioneering clinic in Strasburg, Pa., in the heart of Pennsylvania's Amish community. The 13-year-old clinic was founded by Dr. Holmes Morton, who has identified more than 80 genetic disorders.
Morton has emphasized infant screening and detailed attention to routine sicknesses that can lead to life-threatening complications.
About a third of the genetic disorders he identified can be successfully treated if caught early, giving children a chance for a normal life, Wang said.
The Das Deutsch Center raised $700,000 in startup money through foundation grants and community fund-raising, including auctions offering Amish quilts and buggies.
The financial backing will keep fees in line with other doctors in the area, according to board president Tom Stone. The state helps pay for the care of multiple handicapped youngsters, and some Amish have self-insurance.
Along with treating young patients, Wang eventually plans to do genetic research locally and in conjunction with researchers elsewhere. Backers emphasize that the clinic's genetic findings can help other close-knit communities.
While many pediatricians might spend 15 minutes with a patient and see dozens each day, Wang expects to see maybe four a day, and most during house calls.
"These patients are complicated. It's pretty challenging for the physician," the 39-year-old Wang said.
He said a pediatrician with many patients might hospitalize a multiple handicapped pneumonia patient out of an abundance of caution. But a doctor familiar with the patient and the patient's routine of up to a dozen or more medications might be able to successfully treat the pneumonia at home, he said.
One physician immersing himself in a patient's complicated array of problems can avoid the repeat tests that can occur if different doctors are separately involved, Wang said.
That can offer convenience important in the sometimes-isolated Amish community, where people shun electricity and travel by horse-drawn buggy on roads increasingly clogged by commuter and tourist traffic.
Over the years, Kristina has been to many doctors, some as far away as Akron and Cleveland, a two-hour round trip that can cost up to $50 to $75 by taxi.
Some Amish families in the area have several children with multiple disabilities, like the four disabled children, ages 5 to 16, of Mark and Esther Kauffman.
"There's no question it's genetics," Wang said. "The gene pool is smaller."
Miller, 36, said she has learned to cope with Kristina's disabilities.
"As long as she's comfortable, I'm happy," she said as she ducked out of the aim of a photographer recording the scene. Most Amish don't want to be photographed, based on religious tenets.
"I try to accept it as it is because that's probably the way God wanted her to be," Miller said as a bonneted daughter and floppy-haired son watched in the family's spotless farmhouse kitchen.
Wang spent several weeks making mostly social visits to his prospective patients while getting his medical license in Ohio. He has been impressed by the love shown to the handicapped Amish youngsters.
"They feel they are special kids. They are also God's gifts," he said. "They take care of them very well."
It was that spirit amid the Amish communities concentrated here and in Holmes County south of Akron that convinced Wang and his wife that they should move with their two children, ages 5 and 9, from Little Rock, Ark.
"I'll be able to do my research, I'll be able to take care of my patients," he said.
Wang, who was born in Anhui, China, said his accent and foreign background hadn't been a cultural barrier in the Amish community.
"We got off well," said Wang. He smiles as he recalls the hospitality of the Amish, who are known for their huge dinners.
"I just use common sense. I respect them. I respect their culture," he said.
Freida Miller, her eyes still on her nearly motionless daughter, agreed. "I think we communicate pretty well. He's a good doctor," she said.
(Copyright 2002 by The Associated Press. All Rights Reserved.)