Congenital heart defects in general are considered the most common cause of birth defects. Approximately 32,000 infants are diagnosed with a congenital heart defect each year. The causes of congenital heart defects among most babies are unknown and thought to be caused by a combination of genes and other risk factors such as exposure to the environment.
Catherine L. Webb, M.D., M.S, pediatric cardiologist and professor of Pediatrics and Communicable Diseases at the University of Michigan Medical School, says she often finds herself reassuring parents after their babies are diagnosed with a congenital heart defect.
“I always make a point of telling parents their baby's congenital heart defect isn't a result of something they did or didn't do during the pregnancy,” Webb says. “They often feel tremendous guilt and yet there's nothing they could have done to prevent their child's congenital heart defect.”
Webb notes symptoms of a congenital heart defect vary from child to child but can include a heart murmur, rapid breathing or panting, trouble with feeding, or cyanosis, a bluish tinge around the mouth and nose that indicates a lack of oxygen (these babies are often described as “blue babies”). Slow growth and profuse sweating during feedings can also signal a problem.
“Since 1980 we've seen tremendous progress in treating congenital heart defects in infants,” Webb says. “Through both medical and surgical interventions, many cases of congenital heart defects are highly treatable, and if detected early, allow children to lead full and happy lives.”
Support for families who have a child born with a congenital heart defect is critical, adds Webb.
When their daughter Addie was diagnosed with the congenital heart defect ALCAPA, or anomalous left coronary from the pulmonary artery, Dana Klein and her husband, actor Mark Feuerstein, found comfort on websites such as BabyCenter.com. The site has an online forum for ALCAPA families, and they also found an ALCAPA Facebook group online. (To read more about Addie, see “For the Love of Addie,” the cover story of the August 2013 issue of Heart Insight.)
“Addie's condition was so rare that it really helped to connect with other families who were familiar with ALCAPA,” Dana says. “We even had one little girl who was born with ALCAPA who came to visit us in the hospital. She was six years old and it was so great to see her so strong and doing so well.”
Webb says the overall prognosis for children born with a congenital heart defect is also quite hopeful when the condition is diagnosed and treated early.
“The prognosis for patients with congenital heart defects is far superior today compared to even 10 years ago,” Webb says. “There are as many as 1.3 million Americans living today with some form of a congenital heart defect.” Due to the treatments now available for the most common types of congenital heart defects, the outcomes generally are excellent, with normal life expectancies and normal activity levels for most.
For more information on congenital heart defects and support for caregivers, visit the American Heart Association's site at heart.org/congenitalheartdefects and heart.org/caregivers.