Healing Little Hearts: Helping Babies With Cardiac Defects
There may be nothing more frightening to new parents than sitting down with a doctor and hearing this sentence: “Your baby was born with a heart defect.” However, every year in the United States, about 40,000 children are born with a heart that didn’t develop perfectly in the womb—it might have a hole between its different chambers, a missing or malformed valve, thickened muscles on one side, or more. “When your baby is diagnosed with a congenital heart defect, the most important thing is to inform yourself about treatments and options and to remain hopeful,” says Randall Caldwell, MD, a pediatric cardiologist at Riley Hospital for Children at IU Health. “There is no heart problem we can’t fix or transplant. And children have an amazing ability to regenerate heart tissue, which adults don’t.”
Additionally, Dr. Caldwell points out that there have been life-changing breakthroughs in coronary medicine over the last few decades, including fetal echocardiograms and high-tech surgeries, that have helped babies with heart problems live longer and healthier lives than ever before.
If your baby is born with a heart defect, it will likely be diagnosed before you even leave the hospital, since all newborns are screened for heart conditions. When your doctor shares the news, however, you may be too stunned and upset to really absorb the details. “Most parents hear congenital heart defect, and then they can’t hear anything after that,” says Dr. Caldwell. “The doctor may recommend immediate surgery, or he may say, ‘We’ll see you back in a few weeks, a few months, or a year.’” If that’s the case, don’t be afraid to call and ask for a follow-up a few days later to find out more details, bringing all your questions and notebook to write the details in.
If surgery is required, your doctor may recommend waiting a few days, even if the baby is cyanotic (that’s when the skin and lips turn a bluish tinge from lack of oxygen in the blood), says Dr. Caldwell. “You can do surgery at day one, but there is actually less risk if you wait five to seven days to allow the lungs to develop a bit more and the arteries to mature,” he explains. And as with any major conditions, especially those requiring surgery, don’t be afraid to ask for a second opinion.
When your baby comes back home with you—either with or without surgery—pay attention to any advice from your doctor, but otherwise treat him or her as a normal child, says Dr. Caldwell. “Just keep a low threshold for asking questions,” he says. Any time you’re worried about something, like the baby not eating or getting tired quickly, always check in with your doctor.
It’s also important to keep to the regular schedule of check-ups your pediatric cardiologist recommends, whether it’s once every few months or once a year, and to seek out the help of a specialist, rather than your local pediatrician. “Choose a pediatric cardiology center that has a full gamut of care, from simple day-to-day care to the most complex heart transplants,” Dr. Caldwell recommends. “Hopefully, you’ll never need it, but it means they have a full complement of health-care providers and won’t have to refer you out to another place if needed,” he explains.