Finding Support When Your Child is Battling the Most Common Type of Birth Defect
By Jenny NowatzkeCardiology February 13, 2019
On the first Thursday of every other month, you’ll find a group of adults gathered inside a space designed for pediatric cardiology patients. Every person is from a different background with a different story, but they all have one common connection – congenital heart disease (CHD).
“We want to connect these families because they’re a great source of comfort to each other,” says Jean Waldron, RN, staff nurse at Northwestern Medicine Central DuPage Hospital who helps organize the support group through the Pediatric Congenital Heart Association of Illinois (PCHA-IL). “Carol Raimondi is the Illinois board president and is instrumental in our support group’s success. We try to make each meeting a learning experience, while also giving the families a chance to share their fears, struggles and triumphs.”
CHD is the most common type of birth defect in the country. According to the American Heart Association, approximately 400,000 children are born with a heart defect each year, meaning, the heart or blood vessels near the heart don’t develop normally. The pediatric cardiology clinic at Central DuPage Hospital continues to grow, treating patients with complex and serious heart conditions.
“Our goal is to catch these new cases in time and increase survival rates,” says Michael Perez, MD, pediatric cardiologist at Lurie Children’s at Northwestern Medicine Central DuPage Hospital, who spoke to the support group in January. “Congenital heart defects in children can vary from mild to severe. Surgery or medication is often needed, but in some cases, these heart defects can improve or correct themselves over time. It’s important for the public to be aware that children can have heart disorders too, which can be very different from adults.”
During the bi-monthly support group, a guest speaker or activity is arranged for the first 30 minutes, followed by a question and answer session. The second half of the meeting allows time for individuals to talk and share their own experiences. The group is open to patients, caregivers and loved ones who have been affected by CHD – like Ashley Ruud of South Elgin, Illinois, whose daughter was born with complex CHD. Ruud has helped coordinate the PCHA-IL support group at Central DuPage Hospital for nearly eight years.
“Having a baby born with CHD can make you feel so alone,” Ruud explains. “With so many babies born around you perfectly healthy, you can struggle wondering why your baby isn’t. I want people to leave our meetings with new knowledge and support, ready to tackle the next steps in their CHD journey. This group has become my extended family.”
The next scheduled meetings will be held on March 7, May 2, July 11 and September 5, from 7 – 9 p.m., inside the Pediatric Outpatient Center on the first floor of Northwestern Medicine Central DuPage Hospital, located at 25 North Winfield Road, Winfield, Illinois. Healthy snacks are also provided.
To register for the support group, please call 630.933.4234.