Caring for the Amish Children of Wisconsin

Pediatric Pathways

Caring for the Amish Children of Wisconsin

Clinic for Special Children founder Holmes Morton, MD, visits UW

Holmes Morton, MDOn October 10 and 11, 2012, the UW Department of Pediatrics welcomed Holmes Morton, MD, the founder of Pennsylvania’s Clinic for Special Children and winner of an Albert Schweitzer Prize for Humanitarianism and a MacArthur fellowship, as a visiting professor.

The Clinic for Special Children has cared for children with over 100 rare genetic disorders, advanced newborn screening methods, and furthered clinical research on inherited disorders. Its successes have translated into improved care for all children with inherited disorders - not just those in the Amish and Mennonite communities.

Dr. Morton’s visit focused on improving newborn screening for and health care delivery to Wisconsin’s Amish and Mennonite population - which, at over 16,000 for the Amish and growing rapidly, is the fourth largest in the U.S.

A "Phenomenal" Community Event

Dr. Morton spent his first day at a community health event in Norwalk, near one of the more concentrated Amish settlements in the state. Half of the 400 attendees were community practitioners, state and county health personnel, and UW School of Medicine and Public Health faculty, staff, and residents. The remaining half were Amish and Mennonite individuals, families, and midwives - some of whom came from 300 miles away.

Dr. Morton gave an inspiring presentation on ways to improve newborn screening and health care delivery to Amish and Mennonite communities. A licensed midwife provided newborn screening training for Amish midwives, and Jim DeLine, MD, a family physician who cares for many Amish and Mennonite families at the nearby La Farge Medical Clinic, led a question-and-answer session for all participants. Lunch was provided by Amish women from several nearby communities, and participants lingered for hours afterwards to speak directly to Dr. Morton.

“This was a phenomenal event that truly helped define barriers to healthcare for Amish and Mennonite communities in Wisconsin, and created new lines of communication between those communities and UW,” said associate professor Christine Seroogy, MD, who organized the professorship.

Connecting Further on Campus

Dr. Morton then gave several presentations on the UW School of Medicine and Public Health campus. His Pediatrics Grand Rounds talk, “Genomics, Plain People, and Local Medical Homes,” delved into the science behind some of the genetic disorders encountered in the population the clinic serves. Dr. Morton went on to explain how more than 20 years of deep, population-specific knowledge enables him and his staff to make faster and more cost-effective diagnoses, and recommend appropriate interventions.

He emphasized that many genetic disorders seen at the clinic can be identified in the first 24 hours of life. What’s more, nearly 80 percent of those disorders are treatable, furthering the case for more comprehensive newborn screening for all children.

Later, in “Cutting-Edge Diagnostic Testing the Low-Budget Way,” he shared concrete suggestions for advancing newborn screening in Amish and Mennonite populations. Now, Dr. Seroogy and others are considering how to implement some of his suggestions in Wisconsin.

“The one thing [he] hammered home is that you have to be in the community,” Dr. Seroogy said. “There are a lot of babies that are not being seen, and if we had a presence in the community, that could change.”

References

http://www2.etown.edu/amishstudies/Population_by_State_2012.asp

Financial support for the professorship was provided by a grant from the American Academy of Pediatrics and its Wisconsin Chapter (Ellen Wald, MD, principal investigator); the March of Dimes; and the American Family Children’s Hospital.