BY KATHY CHANG
Staff Writer
WOODBRIDGE — Port Reading resident Liz Paonessa found out when she was 17 weeks pregnant that her son Anthony was going to be born with half a heart that actually works.
“It is scary because you don’t know if he’ll need a heart transplant and you don’t know what the next steps are,” she said.
Now her son is 3 years old. Anthony, who attends pre-K at Port Reading School No. 9, was diagnosed with hypoplastic left heart syndrome and has endured two open heart surgeries, one at a day and a half old and a second surgery at 5 months old. This summer, Anthony will undergo his third surgery.
“Ever since then I have been a big advocate for the congenital heart defect coalition,” she said, noting that she is a treasurer for the organization.
Paonessa reached out to Mayor John McCormac to recognize the week of Feb. 7-14 as Congenital Heart Defect (CHD) Awareness Week in Woodbridge Township. The mayor read a proclamation at a presentation ceremony for the week on Feb. 2.
More than 40,000 babies are born with a congenital heart defect, which McCormac said is pretty surprising.
Paonessa said many infants die of the congenital heart defect, more than cancer and other diseases. She said CHD does not get the recognition that it needs.
Alison Dziuban, originally from Port Reading and now a resident of Aberdeen, attended the proclamation ceremony with her daughter Avery.
Dziuban said she found out that her daughter had complete atrioventricular canal defect (CAVC) when she was 24 weeks pregnant.
“Basically she had a hole in her heart, actually two holes, and a missing valve,” she said. “She needed quite extensive surgery at 4 months [old] on Sept. 16 [2015] … thankfully she has been doing excellent. She has been growing, she’s happy and was a big hit in the ICU because she was just smiling. Thankfully as scary as it was, [the defect] never slowed her down. She’s been doing very well.”
Clark residents Kelly Brand and her son Christopher, 5, attended the ceremony. Brand said her story was a bit different, explaining that her son was not diagnosed when she was pregnant.
“When he was born, we thought he was completely healthy,” she said. “He was released from the hospital with a clean bill of health. However, we found out when he was 3 months old that he was in complete heart failure. He did not look like it … he was just a little skinnier and that was our only real clue.”
Brand said her son, who was diagnosed with ALCAPA (anomalous left coronary artery arising from the pulmonary artery) was rushed straight from their doctor’s office to Mount Sinai Hospital in New York.
“Basically his plumbing was wrong … his arteries were being given unclean blood,” she said. “Luckily, he had open heart surgery and his heart recovered completely.”
Brand said now Christopher is a normal child and plays sports.
“You would not know that he went through that when he was 3 months old,” she said.
Brand noted that she, Dziuban and Paonessa were cheerleaders together and graduated high school together.
“This is a lot more common than one may realize,” she said, adding that it is important to get the word out about CHD.
Brand said her family has been involved with the American Heart Association and the Congenital Heart Defect Coalition, and have been involved with Mount Sinai Hospital.
She said the efforts by parents so far have helped with the passage of a legislative bill requiring all birthing facilities to screen newborn babies for congenital heart defects through a process called pulse oximetry screening in New York.