Resilient 3-year-old will lead team in HeartWalk Sunday

By Pamela Mcloughlin
Register Staff
NEW HAVEN — Lisa and Steven Romano tried for so long to have a child that they were about to give up and change direction in life, even move out of state for new adventures, when the news came in 2004 that she was pregnant.
Their joy was hard to contain.
And weeks later, so was their trauma, when they learned in Lisa’s 18th week of pregnancy that their unborn son had a congenital heart defect. The doctor had picked up the abnormality in a routine visit.
“It was the most devastating day of my life,” said Lisa Romano. “We were scared to death.”
Doctors offered to terminate the pregnancy, a standard offer in such situations, Lisa Romano said, but the couple wasn’t about to give up, especially after nearly three years of trying to conceive.
Today, every second with their son, Nicholas, 3, reminds the Romanos, of Orange, how right they were to persevere.
After four surgeries, one of them a major open heart surgery at age 2, Nicholas bounces around with typical preschooler energy, is heading toward perfect potty training and can count to 10 in Spanish, just one of many signs of his “genius” mind, Lisa says.
Nicholas has come so far that Sunday May 18he’ll lead Team Romano as a Junior Red Cap Ambassador in the American Heart Association’s HeartWalk at Lighthouse Point Park in New Haven beginning at 11 a.m. Registration is at 10 a.m.
Steve Romano said they walked last year and raised $500 for the cause so close to their hearts and this year have set the goal at $1,000.
“We want people to know (the family’s story), so other families don’t have to deal with what we went through,” Steve Romano said, referring to money to be raised through the walk for research.
Susan Daddio, regional director of New Haven’s HeartWalk, said it’s important for people to realize through real life stories such as Niicholas’ that heart disease often affects the young, though it’s often thought of as an elderly disease.
“My heart goes out to children with heart disease,” Daddio said, noting how those littlest ones have an entire life ahead of them.
Lisa Romano, 40, said while some people consider Disney World the greatest place on Earth, she and Steve, 41, believe that title goes to Children’s Hospital of Philadelphia, whose doctors have watched Nicholas since soon after the in utero diagnosis.
He was a planned delivery at the University of Pennsylvania, right next to the children’s hospital, and was whisked away immediately, his mom said.
Nicholas weighed a whopping 10 pounds at birth and was pinkish, not blue, which was an indication he was better off than first thought.
His first surgery occurred when he was 3 days old, to suture his lower intestine and bowel because he also had Heterotaxy Syndrome, a malformation in anatomy that could have caused a blockage. Two months later, he had a second surgery at Children’s Hospital of Philadelphia. His third surgery was July 2005 at Yale-New Haven Children’s Hospital for an abdominal obstruction caused from scar tissue from the previous surgery.
At age 2, he had open heart surgery to repair his congenital heart defect. He will have to have surgery again to replace the patches that they use because the patches will not grow with him, and his heart will never function the way a normal heart does.
But Lisa Romano said doctors told them Nicholas will live a healthy and happy life just the way he is.
The biggest day-to-day worry for the Romanos is infection because Nicholas doesn’t have a spleen, the organ that filters bacteria before it gets to the liver. That means he has to take Amoxicillin daily and the Romanos use antibacterial wipes a lot more than even the fussiest germ warriors. They say they keep the house extra clean. Should Nicholas get a fever, he has to go to the hospital as a precaution.
The goal of the HeartWalk here is to raise $375,000 in pledges, and they aren’t there yet. Daddio said anyone interested in helping can sign up to walk up to the last minute, either by joining a team or forming their own. They can also pledge to Team Romano. For more information, call Daddio at (203) 294-3529 or visit the New Haven HeartWalk Web site.
“I just want to how proud and happy we are of our son,” Lisa Romano said. “He is the most incredible little boy you will ever meet; polite, gentle and so loving.”