As a pediatric immunologist, Christine Seroogy, MD, associate professor of pediatrics at the University of Wisconsin School of Medicine and Public Health (SMPH), saw tragic and serious medical conditions that could have been prevented. The medical conditions, that were sometimes fatal or resulting in permanent disability and costly hospitalizations, could have been diagnosed earlier and referred to proper medical care with newborn screening.
Though all newborns in Wisconsin are required by Statute and Administrative Rule to undergo newborn screening to identify numerous metabolic and genetic disorders, and virtually all Wisconsin babies born in hospitals are tested, this is not the case for all out-of-hospital deliveries, including Amish births in Wisconsin. This puts these newborns at risk for death or serious disability.
Wisconsin has the fourth-highest population of Amish in the United States, but has not had a recognizable health care delivery system for this unique culture. As a population, the Amish and Old Order Mennonite, collectively called Plain communities, have an increased frequency of inherited genetic diseases, many of which are screened for with newborn screening. Not all Plain newborns undergo newborn screening, and it was estimated that potentially several hundred Amish babies escaped newborn screening in Wisconsin each year.
Seroogy and her team of investigators and collaborators are using their award from the Wisconsin Partnership Program to address this critical health care need. The long-term goal of the project is to improve access to approachable, culturally appropriate, high-quality affordable health care for all Wisconsin Plain community children. To achieve this, the project aims to expand newborn screening tests to all Amish infants in a high-risk area of southwestern Wisconsin, and assure appropriate communication and follow-up care.
Focus on cultural sensitivity helps build trust
Throughout their work, Seroogy and her team have focused on cultural sensitivity.
“The Amish have long traditions not always understood by the general population,” said Seroogy. “Our goal was to develop an understanding and work with the Plain community in a way that was respectful and beneficial.”
The funding from the Partnership Program has been invaluable in helping us improve health care delivery for Amish infants, and what we are learning about genetic disorders and how to treat them gives us knowledge that transcends culture and translates into potential health care improvements for all children in Wisconsin.
The project’s comprehensive community survey not only focused on querying about genetic disorders within families, but also on understanding the community’s beliefs about newborn screenings and access to care.
“The progress and success of our project has been based upon the relationships and trust we’ve built in this community,” says Seroogy.
The most powerful way the project team has been able to build trust is through testimonials and examples from individual families.
“When a baby is born with a critical heart condition and we are able to make a genetic diagnosis in a matter of days, we give the family and doctor a definitive diagnosis that leads to valuable information about life-saving treatment options,” says Seroogy.
This builds trust and underscores the importance of the team’s work in understanding the community and its genetic disorders, as well as the importance of providing cost-effective genetic testing.
One of the project’s collaborators, family physician James DeLine, MD, of the La Farge Medical Clinic, Vernon Memorial Healthcare, has developed strong relationships and trust through his clinic. He has been reaching out to and treating members of the Plain Community for decades. Through his work, the Center for Special Children was established in 2015 within the La Farge Medical Clinic.
The center offers low-cost genetic testing and care for Plain children and their families with rare genetic and metabolic disorders. Project members and other UW Health specialists work with DeLine and his team to provide care for the families seen at the Center for Special Children.
Through this collaboration with the Center for Special Children, Seroogy and the project team also seek to further define the genetic disorders within the Wisconsin Plain communities by using state-of-the-art genetic testing. This will provide an improved and broader understanding of the more frequent genetic conditions and help to develop affordable genetic testing.
Strong team, Partnership funding lead to improved care
Seroogy credits the strong team of investigators and collaborators who are working to improve health for Plain families and their children. The team includes members of the UW School of Medicine and Public Health Department of Pediatrics including Jessica Scott-Schwoerer, MD; Greg Rice, MD; and Ashley Kuhl, MS, genetic counselor, who provide care at the Center for Special Children.
The team also includes Jennifer Laffin, PhD, who is spearheading the development of cost-effective genetic testing, and Mei Baker, MD, and the Wisconsin State Laboratory of Hygiene.
Project team members also include are DeLine, family physician at La Farge Medical Clinic, Center for Special Children; Gretchen Spicer, licensed midwife, community organizer and highly trusted resource within the Plain community; and Murray Katcher, MD, professor emeritus in the School of Medicine and Public Health Department of Pediatrics.
The project includes cross-campus collaborator Professor Mark Louden, German department, UW College of Letters and Science, who serves as linguist and cultural advisor.
“The funding from the Partnership Program has been invaluable in helping us improve health care delivery for Amish infants,” says Seroogy, “and what we are learning about genetic disorders and how to treat them gives us knowledge that transcends culture and translates into potential health care improvements for all children in Wisconsin.”