It’s a parent’s worst nightmare – your doctor tells you that your baby has heart defects. The diagnosis of congenital heart defects - structural problems with the heart present at birth - can come when the baby is in utero, and with the right testing like low-cost, non-invasive pulse oximetry, it can be detected immediately after birth. Either way, the diagnosis is frightening for parents at a time when emotions and anxiety are already high.
Out of 1,000 births, nine babies will have some form of congenital heart disorder, most of which are mild. Defects range in severity from simple problems, such as "holes" between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves. Sometimes multiple serious defects are present, which was the case of Carmel resident, Nico DiFabio.
Nico DiFabio was diagnosed in-utero at 24 weeks with a complex congenital heart defect. His mother, Donna, was told that his only chance of survival was to have a series of three operations over 3-4 years, two of which were open-heart surgeries. His cariologist did not know whether Nico would need immediate surgery or whether he would be able to wait for a few weeks. Nico was born on August 12, 2002 and had cardiac catheterization at 2 weeks old. He had open heart surgery at 4 months old.
Just shy of his second birthday, Nico had another cardiac catheterization and for six hours doctors worked to fix his tiny arteries. A few days later, he had his second open heart surgery. Just over a year after that, he endured another five-hour catheterization to close defects in his arteries.
Today, ten-year old Nico sees his cardiologist two times a year. His mother says he cannot play contact sports, which is difficult because he loves sports and wants to play football. He will eventually need another cardiac cath.
“The doctors have taken a serious life-threatening medical condition and made it into a chronic manageable condition,” said a grateful Donna DiFabio who shared her son’s story recently at the American Heart Association’s Putnam Heart Walk kick off event.
“We don’t know what the future holds. He may need a pacemaker or heart transplant,” she said. She is grateful for the scientific progress that has helped keep her son alive.
Nico is serving as an Honoree at this year’s Putnam Heart Walk. The funds raised at the event will support the American Heart Association’s awareness and education programs and scientific research. The American Heart Association’s funding for pediatric cardiac research is second only to the federal government.
Funds will also support the AHA’s advocacy goals including policies to require birthing facilities to perform a pulse oximetry screening on every newborn prior to discharge. Residents can join this grassroots effort at www.yourethecure.org .
Teams and individuals can join Nico at the Putnam Heart Walk, on Sunday, April 28th at Brewster High School. Register at www.putnamheartwalk.org or call Jennifer Gelick at 914-640-3274 or by email at Jennifer.gelick@heart.org
