When Stephanie and Jamie Paruolo’s son Noah was born five years ago, he made what Stephanie described as a “continuous humming sound.”
When he was two weeks old, the pediatrician listened to his heart and kept the stethoscope on him for what seemed like 15 minutes.
“I’m a nurse,” Stephanie, an RN who is the Assistant Vice President, Patient Care Services at St. Luke’s Cornwall Hospital, said. “I knew that wasn’t good.”
The pediatrician had heard a severe heart murmur, and Noah’s moms were told he’d have to go see a cardiologist.
Noah was diagnosed with two congenital heart defects: an atrial septal defect, which is a hole in the wall (the septum) that divides the upper chambers (the atria) of the heart; and a persistent superior vena cava, where a second heart vein fails to regress during embryonic development.
“We were hopeful that the hole would close on its own, so every three weeks, he had an echocardiogram to evaluate if surgery was necessary,” Paruolo said. “That eventually became every month, then every six weeks.”
At a routine appointment when Noah was 18 months old, that changed, and the doctor said that open heart surgery was necessary as soon as possible. The hole in his heart got larger and he was going to have to start diuretics.
Paruolo said sending their son to surgery was very difficult.
“We are both nurses, and we had to leave him in the O.R., knowing they’d have to open his chest, and operate on his tiny heart,” Paruolo said. “We waited three and a half hours, and to this day, remember what a great feeling it was when we got the call that everything had gone well.”
The Paruolos said they noticed an immediate improvement, as Noah’s coloring improved, his energy increased, he slept better, and they even saw an impact on his behavior.
In 2020, the Paruolos’ second child, Emilie, was born. While expecting her, the couple had in vitro echoes to see if she would have a congenital heart defect. Emilie has pulmonary arterial stenosis, a narrowing of the large blood vessel that takes blood from the right ventricle of the heart to the lungs, and pulmonary valve stenosis, a narrowing of the valve located between the lower right chamber of the heart and the lung arteries.
“We thought she would need a cardiac catheterization to correct her defect, but she didn’t,” Paruolo said. “She is monitored by a cardiologist, and she’s thriving and healthy.”
The Paruolos are committed to sharing their story so they can give back to others facing the same challenges they have faced. Noah has a best friend who is also from a two-mother family, and was also diagnosed with an atrial septal defect after Noah had his surgery.
“Noah and his friend are both 5 now, and have matching scars.”
Paruolo said they are fortunate to have their children, and that their children have had such good outcomes.
“My wife was an ER nurse, and when Noah was diagnosed, congenital heart defects became her passion,” Paruolo said. “She went to the cardiac cath lab, found all the resources, and learned and understood everything she could. We want to give back, to raise awareness about congenital heart defects, and share our knowledge. We want people to understand the importance of early screening for congenital heart defects and recognizing red flags in family history.”
It was hard to go through everything they did, Paruolo said, but they have come out the other end of it. She praised organizations like the American Heart Association, who research congenital heart defects and provide resources about them.
“Noah won’t need any more surgeries, and he loves soccer and jujitsu,” Paruolo said. “Emilie is just the sweetest little thing. She loves Paw Patrol, Minnie Mouse, and her brother.”
The Paruolo family, who live in Beacon, will share their story at the Tri-County Heart Walk at Lake Welch Beach on the Harriman State Campus on Saturday, May 21. For information, visit TriCountyHeartWalk.org.