The Green River Area Down Syndrome Association (GRADSA) has extended its services to create a more positive experience for parents when being informed that their newborn has Down syndrome. Through a Certified Medical Outreach Program, the group provides local OB-GYN doctors, maternal-fetal medicine, and maternity services at Owensboro Health Regional Hospital with informational materials on presenting a positive diagnosis experience.
Upon receiving a scholarship from Lettercase National Center — a program at the University of Kentucky’s Human Development Institute — The board voted to expand the outreach committee to include the medical portion last in March 2020. Christie Ashby, Cindy Wimsatt, and Renee Estes compose a portion of the committee and will engage in monthly training with Lettercase until July 2022.
Ashby cited a recent study at the University of South Carolina that showed that roughly half of women did not receive the support and information they needed when providers suspected a Down syndrome diagnosis.
“The presentation of the diagnosis such as saying ‘I’m sorry or I have bad news’ leaves a light bulb moment on new parents when getting the diagnosis … Ultimately, they want to hear ‘Congratulations’ because all new parents want to hear that when having a baby,” Ashby said.
She added that “new parents report wanting information materials, face-to-face meetings with providers when receiving the diagnosis, and parent-support services.” The GRADSA program provides informational bags for parents at diagnosis, welcome baskets at delivery, and new parent meetings to meet with other parents sharing a similar experience.
“We connect new parents to other nationally well-known support groups for more specific health concerns,” Ashby said. “The sooner we connect to new parents and help answer questions or just provide emotional support, the better they hopefully feel overall about the diagnosis.”
GRADSA executive director said the entire outreach committee is “working hard to not only improve the medical diagnosis but to maintain relationships with the families as they develop.”
There are typically three-five Down syndrome births in the area annually. Ashby said providing information about Down syndrome strengthens the connection formed between the program and medical professionals.
“Making sure each provider has the most up-to-date materials, providing lunch-n-learns which has been more difficult due to COVID-19, and Down syndrome awareness events in October and March increases the connection,” she said. “Keeping open communication with each office on new families and the support they need is our priority.”
Lettercase provides training to the group via learning modules, webinars, support calls, and comprehensive ongoing support, including customized medical outreach plans, ongoing webinars, and connections with medical mentors in the local area.
“As a scholarship recipient, we participate in a University of Kentucky study to determine the impact of medical outreach efforts by advocacy organizations on the diagnosis experiences of families and provider knowledge about genetic conditions,” Ashby said.
Any new prenatal or postnatally diagnosed parent can contact Ashby by phone at 812-301-2235 or via email at [email protected]. Parents can also submit a form on the GRADSA website here.
