Seminar Helps Children Born with Broken Hearts
California Heart Connection, a nonprofit support network for children and adults with congenital heart defects, hosted a seminar for parents on Saturday, October 20th, 2007 at the Tustin Area Senior Center from 8:30am to 3:30pm. This first-of-its-kind event brought together medical experts and parents of children needing open-heart surgery from all over Southern California.
Sponsored by a grant from Edwards Lifesciences, this was the first time so many Southern California hospitals have participated in an event to help families with infants and young children with congenital heart disease. Speakers included pediatric cardiologists and other specialists from children's hospitals throughout San Diego, Orange County, Long Beach and Los Angeles.
"We're fortunate to have so many experienced children's hospitals in Southern California which can perform pediatric heart surgeries," said Debbie Hilton Kamm, co-founder of California Heart Connection. "Our members include over 500 families from all over California and we are happy to provide one cohesive event which incorporates experts from many different hospitals."
Topics included diagnostic tests and medical procedures in addition to other issues that affect children having heart surgery at a young age. Developmental delays and learning disabilities are potential consequences of being put on cardiopulmonary bypass, enduring long stays in the intensive care unit, living with low oxygen levels, or surviving strokes, a potential complication of open-heart surgery. Attendees learned about Early Intervention Services, which can help with developmental delays, and how best to work with the school system if learning disabilities are evident. Future advancements in pediatric heart surgery was also presented to an audience filled with parents hopeful for the future. (See a complete list of speakers and topics.)
Congenital heart defects are more prevalent than most people realize, with the number of survivors growing considerably over the last few decades due to medical and surgical advancements.
According to the Children's Heart Foundation, congenital heart defects (CHDs):
- are America's most common birth defect, affecting nearly one out of every 100 births, or 40,000 babies a year.
- result in twice as many deaths annually than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
- occur largely from unknown causes and there is currently no cure.
"In addition to all of the emotional turmoil, there's so much parents need to know when they learn their child needs heart surgery it's overwhelming," said Debbie Hilton Kamm.
And she should know. Her son was diagnosed during pregnancy with a condition called Hypoplastic Left Heart Syndrome. He would be born with just half a heart.
The options: decline surgery, resulting in his death within a week of birth, place him on a list for an infant heart transplant, or choose a 3-stage surgery to allow his heart to work with just two of its four chambers. None of the options guaranteed survival. Kamm and her husband opted for the 3-stage surgery for their son, Braedon, who underwent all three surgeries before the age of two.
Soon after Braedon's birth, Kamm met Karin Yospe, whose daughter, Rebekah, was born with a backwards heart that lies on the wrong side of her chest. This defect went unnoticed until after birth, despite routine ultrasounds. She may face surgery in the future to close a ventricular septal defect a hole between the lower chambers of her heart.
When the two mothers, both of Irvine, discovered there were no support networks in Southern California, they founded California Heart Connection to help families throughout the state. They began by holding annual picnics which drew families from all over Southern California, and even nearby states. The all-volunteer 501(c)(3) organization now also offers an online support group, matching of those with similar defects, and resources and information on their website (www.caheartconnection.org) including free downloadable handouts and forms. The organization also provides teddy bears to children's hospitals for babies and children undergoing heart surgery as a way of letting families know they are not alone.
"Congenital heart defects just aren't on most parents' radar," says Yospe. "We were stunned to learn that they are the most common type of birth defect, yet no one had mentioned the possibility."
Kamm and Yospe want to raise awareness of congenital heart defects so that parents are aware of its prevalence and to know there is hope even for the most serious heart defects.
"Just twenty-five years ago, prior to the advent of the 3-stage surgery, my son would have had no chance of survival," said Kamm. "Now he is a typical, active 7-year-old - except for having only half-a heart," she says.
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