The upside is that they caught the problem early.
Aiden Rodgers, now 10 months old, was diagnosed with hypoplastic left heart syndrome (HLHS) as a 20-week-old fetus. Affecting about one in 6,000 live births, HLHS is a defect that causes the left side of the heart to stop developing. An underdeveloped left ventricle, mitral valve and aortic valve means a lack of blood flow to the left side of the heart — the part that would typically circulate oxygenated blood to the rest of the body. But mom Jenny Rodgers tries to stay positive.
"We’re lucky because a lot of these go undiagnosed," she tells Fox News. "A lot of these babies, moms take them home and at two days old they start having issues, start turning blue, have difficulty feeding or go into cardiac arrest."
Because the right side of the heart does more work than the left in fetuses anyway, and because mom is breathing for baby, a fetus with severe congenital heart defects may not even show symptoms until delivery or shortly after. And by the time mom notices — often because of blueish color or if the baby isn't eating well — enough damage may have already been done to weaken his candidacy for heart surgery.
“The best outcome for delivery of a baby [with HLHS] would be at a major medical center that can actually take care and are available for emergency procedures after the baby goes from in utero to normal structures — those are the life connections for a baby with [HLHS],” says Nancy Ayres, MD of Texas Children's Hospital. Rodgers heeded that advice, moving from her Benton, LA, home to an apartment at Texas Children’s Fetal Center, only seeing her husband and 19-month-old son on the weekends or before a scheduled procedure.
Born on May 19, Aiden had his first surgery at four days old. A reconstructed aorta and opening of his atrial septum allow all of the oxygenated blood to flow to his body. Aiden was able to return home to Louisiana in October, following a second surgery in September.
Developmentally, Aiden is doing well, but will need another surgery around age two or three. And unfortunately, he may never be completely in the clear. Ayres says some kids with HLHS need heart transplants by their twenties.
“These kids with heart defects, it’s not always genetic [and] can happen as a fluke,” she says. “I want everybody to know it’s out there and to fight for these kids.”