New podcast episode: Mandy's voice - the mom and daughter journey that continues to inspire and educate

Carrie Cobun-Stark shares her daughter's story to spread empathy and compassion

Monday, March 11, 2024

Episode 15: Mandy's Voice - Carrie Cobun-Stark, the mom whose journey with her daughter continues to inspire and educate

"I still remember exactly what he said, he was eating lunch; his quarter pounder with cheese and fries, and he pulled up the scan on the viewfinder and said, 'See this big black hole? This is what's left of Mandy's brain'".

Carrie and her then husband, Mark, had a healthy pregnancy and were prepared to bring their new baby home. After a stressful delivery, and overhearing a doctor refer to their new baby as one of the "bad babies" to be delivered that day, Carrie and Mark confusedly took Mandy home with little to no explanation and with no futher reason to be concerned about Mandy's health or development. 

Doctors talked about Mandy with Carrie in some of the most incompassionate ways when Carrie began to notice differences in Many's development, and it wasn't until Mandy was 18 months old that any health care professional finally sat her down to tell her that nothing she did caused Mandy's condition, and there was hope for them to all live happy lives. 

Carrie's experiences with medical professionals, in advocating for her daughter, and in finding the services Mandy would need, led to a new career and a new life as Mandy's mom. By sharing Mandy's legacy, medical students learn empathy and compassion from the best possible source: a parent. 

Adjusting the Sails is a podcast about the lives and specific challenges children with special healthcare needs and other disabilities face along with their families, caregivers and service providers, and how to manage those challenges. The podcast is a platform for all disability-related topics to be discussed and serves as a mediator between families and caregivers, allowing them to share their stories and experiences. Adjusting the Sails features guest speakers, panelists and a variety of program representatives and service providers to offer education and training to the listener.

This podcast is sponsored by the West Virginia Department of Health and Human Resources, Office of Maternal, Child, and Family Health/Children with Special Health Care Needs Program and the West Virginia Family 2 Family Health Information Center and produced by the West Virginia University Center for Excellence in Disabilities.

Listen to the episode.

View the transcription.