At the Nemours Kinder Clinic, doctors take a new approach with precision medicine
Meredith Newman
As mom talks to the pediatrician about her daughter’s feeding schedule, dad amuses their toddler by tickling her while they crow like the rooster in the painting on the wall.
“You got cuter, I’ll tell you what,” Dr. Matt Demczko said to the blonde Amish girl.
The girl, who has Down syndrome, needed surgery at 3 months to repair a hole in her heart. Now, years later, she is smiley and active. A long pink scar is still visible on her chest.
On this February day, the little girl and her parents are visiting the Kinder Clinic, which is Nemours/A.I. duPont Hospital for Children’s newest health center in Dover. It treats only sick Amish and Mennonite children, some of whom have rare genetic illnesses not seen in the wider Delaware population.
The clinic is run by Demczko and Dr. Mike Fox, who specialize in treating medically complex children.
“We’re good friends now,” Demczko says to the child as he places a stethoscope on her belly. "Last time we weren’t good friends."
The inspiration for the Kinder Clinic came from the success of the Clinic for Special Children in Lancaster, Pennsylvania. Open since 1989, that health center has become a leading expert in genetic testing and disorders that affect the Amish and Mennonite.
Dr. Jay Greenspan, chair of pediatrics at Nemours, said the hospital hopes what doctors learn from the Kinder Clinic will help create a blueprint for a "perfect medical home" that offers precision medicine for all Delaware children.
Although the Amish eschew many of life's modern conveniences, such as electricity in their homes, some have embraced the high-tech world of genetic testing and medical treatment.
The Amish don't believe in having insurance, instead trusting God and the community to help. Both Dover and Lancaster communities routinely hold auctions to help raise cash for medical treatments among their people.
By treating Amish children, the hospital hopes to learn more about using genetic testing to help doctors choose the best course of treatment for patients.
“My dream of where this is going is we take this model in Dover and use it as a way to say, ‘Look we can save a lot of money and heartache by understanding the genetics,” Greenspan said. "We want them to teach us … how to take care of us."
Right now, using genetics to inform a patient's treatment — known as precision or personalized medicine — is easier to do with the Amish because the community has a closed population, Fox said. Few non-Amish people marry into the community.
This means there are certain genetic problems doctors know exist — and dozens they can rule out.
Since opening the Kinder Clinic about a year ago in another Nemours facility, the doctors have about a dozen patients. When Demczko and Fox come to the clinic every month, they walk through a typical waiting room for pediatrician offices, with toys and bright accent colors.
Off to the side, there’s a separate waiting room for Plain families, since some of the children have compromised immune systems and are often not vaccinated. It leads to three exam rooms.
In this area, the decor is simple. Wood accents frame the walls, which feature paintings of the countryside and farm animals. The doctors plan to add a hitching post in the parking lot for horses and buggies. The Amish have said they would build it.
Before the clinic opened, Demzcko and Fox spent six months at the Clinic for Special Children learning from medical director Dr. Kevin Strauss.
The genetic diseases seen in Lancaster Amish are not the same seen in Dover's, Strauss said. This is because Amish settlements are like isolated islands with “no gene inflow.”
While the Lancaster clinic does genetic testing for Nemours' Amish patients, it can't be the primary doctors for Dover's Plain people, Strauss said, and it welcomes the new Delaware clinic.
“That community isn’t going to go away,” Strauss said. “Those children won’t vaporize because you don’t pay attention to them. They’re still going to be born. They’re still going to be sick.”
In late November, Demczko and Fox met with eight of 11 Dover Amish bishops to talk about the clinic and their hopes for it. The doctors hope to encourage community-wide genetic testing to determine what diseases the community faces.
The bishops were open to the idea. The elders recommended Nemours consider testing a day or two before church services, which are held at community members’ homes every other Sunday.
The doctors hope to begin testing this month.
Nemours officials also expect Amish families to be treated at the new Bayhealth Sussex Campus in Milford, where Nemours will have 35,000 square feet of space. The hospital plans to offer a range of specialty care services, including cardiology.
Fox and Demzcko said they have never had a patient's family turn down treatment or testing. Families often have questions about the potential cost or what it's like to be on Medicaid. In situations like those, the doctors often turn to Laura and Toby Miller.
The couple's son, John David, died at 25 months in 2015 from a rare genetic disorder identified by the Lancaster clinic after his death. Toby and Laura became close to Nemours doctors while their son was sick.
Now, when the doctors have a question about Amish culture or meet a family whose child got recently diagnosed, the Millers are the first people they call.
At the end of the appointment with the Amish toddler, Demczko brought up vaccinations. The Amish parents looked at each other hesitantly. The couple feared children can get sick from vaccinations. None of their other six children are vaccinated.
Although a bout of flu or chickenpox likely won't be severe for their other children, either could be deadly for the girl, Demczko said. Her condition brings with it a weakened immune system.
“If it was my child, I’d do it,” he said. “It’s worth a little fever.”
“How much would give your child at one time,” the mother asked.
All of them, Demczko said.
“Let’s do it, she replied.
Contact Meredith Newman at (302) 324-2386 or mnewman@delawareonline.com. Follow her on Twitter at @MereNewman.
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