I was asked for an interview leading up to the AHA Heart Walk that was published in The Tennessean. The following is a portion of the article.
Heart association launches online support network
Catherine Clinkscales thought she was giving herself a gift when she scheduled an ultrasound on her birthday to find out whether the baby she carried was a boy or a girl, but the celebration quickly ended.
She learned that the 20-week-old embryo would be a boy — a boy with hypoplastic right heart syndrome. If he survived birth, he would have to make it through life with basically half a heart. His right ventricle was missing.
“Our world changed that day,” Clinkscales said. “I felt so alone and didn’t know where to turn or what to do.”
She is working to make sure no other parent feels so isolated. This West Meade mother and staff at the American Heart Association in Nashville have launched an online support network for parents of children with congenital heart defects and cardiac disease. Nashville served as one of the beta sites for the initiative, which offers a secure place where people of all ages affected by heart disease and stroke can share their experiences and reliable information from the organization.
Support groups under the Caring for Kids category include “just diagnosed kids,” “pediatric stroke” and “preparing for surgery.”
Clinkscales knows all about the emotional turmoil of having a child undergo open heart surgery. Her boy, Cain, is now a 5-year-old starting kindergarten. To see him running about, no one would know about his three open heart surgeries or the fact that he is still missing his right ventricle, she said. Only the scars on his chest give a clue.
“Two years ago, the pulmonary artery was narrow so he needed a stent to widen that,” she said. “We know that as he grows, that stent will need to be replaced and be widened.”
The time will also come when he will likely need a heart transplant, she said, unless ongoing research yields another surgical treatment.
As a volunteer with the American Heart Association who lives in the city, Clinkscales gets to have face-to-face time with parents of other children with heart disease at events such as the Greater Nashville Heart Walk on Saturday. People who live in rural areas will have better opportunities to join this community through the online support network, she said.
The American Heart Association in a news release said younger cardiac patients also often find themselves isolated.
“We shouldn’t just be concerning ourselves with pills and procedures,” said Dr. Harlan Krumholz of Yale University, one of the study’s authors. “We have to pay attention to things like love and friendship and the context of people’s lives.”
And of course I had to do what any other mother would do when their child is in the newspaper....I bought as many copies as I could. :)