Author: Jen Franklin Kearns, ds-connex team member

As part of our ongoing effort at ds-connex to showcase the great work of our partners and promote idea sharing in the Down syndrome community, we had the pleasure of interviewing Kim Baich at the Down Syndrome Association of Central Ohio (DSACO) to learn more about their Ds Medical Edge program. Kim, a Program Coordinator at DSACO, leads and facilitates this groundbreaking initiative for the 23 counties in Ohio which are served by the organization. This program is just one of many services funded through the annual Columbus Buddy Walk®.

The vision of the Ds Medical Edge program is to “target OB practices, hospitals, genetic counselors/genetic counseling students, nurses/nursing schools, and social workers to provide accurate, up-to-date and balanced resources for medical professionals and parents,” Kim explained. “It is our goal to make a solid connection and have Ds Medical Edge resources in all of the 23 counties we serve.” The goal is that the resources provided will help families “make an educated and well informed decision when they receive a prenatal Down syndrome diagnosis. The resources also provide physicians and genetic counselors information on best practices when delivering a Down syndrome diagnosis.”

This information is dispersed by volunteers who must attend a training session with Kim to learn about the goals of the program, the differences between cell-free DNA screenings and testing, the resources provided and why the information was chosen for the program, and ideas for building relationships with the medical practices they will visit. Those who volunteer have expressed interest in serving in this capacity for a variety of reasons. They may have had a poor experience receiving a Down syndrome diagnosis for their own child and want to ensure others don’t share a similar experience, while others may have received outdated resources (or no resources at all!). Other volunteers are medical professionals and have connections to the medical community; that networking is a valuable resource! Some have a sibling or family member with Down syndrome and want to volunteer in some capacity, and were drawn to this initiative. One of the volunteers is a nurse who has two children with Down syndrome, and he has helped create materials specifically for nurses who work with patients who receive the diagnosis.

The 20 individuals who currently make up the Ds Medical Edge volunteer team have, to date, reached out to 260 obstetricians in the community, visiting 75 practices throughout the 23 counties that DSACO serves. On their quarterly visits, volunteers ensure the practices are well stocked with the resources and share information about the ways DSACO can provide support to families who receive a prenatal diagnosis. They also answer any questions the staff may have and extend invitations to Lunch and Learn seminars where lunch is provided and the volunteer shares the resources available to staff members so that they can better serve the families.

Kim also works to make connections with staff at local hospitals, sharing these valuable resources to any professional that may work with a family receiving a prenatal, or postnatal, Down syndrome diagnosis. Through networking within the medical community, word of mouth, or connections generated through prior relationships with DSACO, she also reaches out to maternity ward nurses, genetic counselors, and social workers.

With such a large area of service, DSACO is creating a tremendous impact on families who receive a Down syndrome diagnosis. Kim described an example of this impact: “We have had families that have received the Ds Medical Edge materials that were unsure about continuing with the pregnancy. There is a great resource available to families entitled, Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome, which we provide to all genetic counselors. This book is specifically written for expectant mothers as they navigate and prepare for the birth of a baby with Down syndrome. It answers pregnancy and birth questions and validates the mother’s emotions. It also provides advice for coping and hope for the future. Occasionally parents reach out to our office to speak to one of our trained mentors who have received a prenatal diagnosis as well. There is comfort in speaking with a family that has already been through the experience and can honestly answer any questions.”

While the Ds Medical Edge program has already seen great success since its creation in 2014, Kim and the program’s volunteers hope to see even more growth this year, including the following goals:

1) To continue the relationship with all of the OB practices, hospitals and medical professionals they currently serve.

2) To make connections with all of the birthing hospitals in the counties they serve and to continue to build the volunteer base, especially in those counties that currently do not have representatives to visit the local OB practices.

3) DSACO is also in the process of creating a Medical Advisory Committee made up of medical professionals in the community to enhance their relationship with the medical community and to help keep current on the latest health issues and trends related to Down syndrome. DSACO’s goal is to have this committee filled with representatives from a variety of medical specialties by year end.

As a parent of a child with Down syndrome who received a very abrupt postnatal diagnosis but no supporting resources, I am absolutely thrilled that this program is available to members of our Down syndrome community in Central Ohio. I look forward to learning about its accomplishments as Kim and her volunteers continue their great work.

For more information about the Ds Medical Edge program, please visit DSACO’s website.