High Tech Meets Horse and Buggy

Freida Miller, her hair pulled back tightly under her Amish bonnet, gently cradled her frail 7-year-old daughter in her lap in a 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.

China-born 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 northeastern Ohio and unlocking its genetic risks.

Wang began making house calls in late spring, and the clinic officially opened with a community reception in June.

In mostly rural Geauga County, located between Cleveland and Youngstown, Amish represent about 12% 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 sister who lost a nearly blind 5-year-old son to degenerative neuropathy, a nervous-system 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 genetic disorder.

He said rare inherited conditions occur less frequently in other groups that have less intermarriage, and thus bigger gene pools.

The Millers have four healthy children, ranging in age from 7 months to 15. Kristina can’t talk or sit up by herself. Despite glaucoma, her vision is good and her eyes follow Wang as he goes about his exam.

The first hint that something was wrong with Kristina came early. “She didn’t do things that babies normally do,” her mother said, “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 swelling is related to Kristina’s other problems.

The Ohio facility is modeled on a pioneering clinic in Strasburg, Pa., in the heart of Pennsylvania’s Amish community.

That 13-year-old clinic was founded by Dr. Holmes Morton, who has identified more than 80 genetic disorders among the Amish.

Some of these are metabolic disorders -- such as glutaric aciduria and maple syrup disease, named for the odor of the victim’s urine -- which can cause brain damage. 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 Morton 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 start-up money through foundation grants and community fund-raising, including auctions of Amish quilts and buggies.

The financial backing will help supplement doctor fees, said Tom Stone, the board’s president. No fee schedule has been set, but the board hopes to keep doctor fees below the $60 to $100 charged by other physicians in the area, said JoAnn Leach, a clinic board member.

The state helps pay for the care of multiple disabled 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 see dozens of patients each day, Wang expects to see maybe four, and most during house calls.

“These patients are complicated,” the 39-year-old Wang said. “It’s pretty challenging for the physician.”

He said a physician aware of a patient’s complex problems and medications would be able to manage a new problem without, for instance, duplicating a test done by a consulting doctor.

That can offer convenience important in the sometimes-isolated Amish community, where people shun electricity and travel by horse-drawn buggies 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.

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 daughter and son watched in the family’s 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 disabled Amish youngsters by parents.

“They feel they are special kids,” he said. “They are also God’s gifts. They take care of them very well.”

It was that spirit amid the Amish communities 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 haven’t been a cultural barrier in the Amish community.

“We got off well,” he said.

He smiles as he recalls the hospitality of the Amish, who are known for their huge dinners.

“I just use common sense,” he said. “I respect them. I respect their culture.”