Heart defects could have killed Rumson baby. Now she's 1 and there's a special celebration

It’s the kind of news no parent wants to hear: Your baby has a heart defect.

Dana and Michael Perito heard it, and not just once. During pregnancy, the couple from Rumson learned Lucy had a hole in her heart, “that it was small, and she may need surgery later in life, or it might heal on its own,” Dana said.

Then Lucy was born, and not only was the hole bigger than believed, but there was another cardiac condition — and it was a full-blown emergency.

“Her aorta was too narrow to pump blood to all of her body,” Michael said.

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Major surgery was performed at Children’s Hospital of Philadelphia, and Lucy was saved. A year later, as she’s about to turn 1, her parents are celebrating by raising money for pediatric cardiac research and care.

It’s an amazing way to pay it forward — and to reassure other parents like them.

There’s hope.

'Hard and emotional 11 months'

It helps to have a friend like Emily Eyerkuss, a neighbor who is a pediatrician with IMA Pediatrics in Hazlet. It was Emily who arranged for the fetal test that pinpointed the prenatal hole in Lucy’s heart. Then, when Lucy was born at Jersey Shore University Medical Center in Neptune and the problem with her aorta became clear, Eyerkuss fielded a tearful call from Dana and immediately drove to the hospital to help out.

“She’s an angel,” Dana said. “We’d be lost without her.”

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Congenital heart defects occur in 1 in 110 U.S. newborns, according to the Centers for Disease Control and Prevention. Surgery is a delicate thing because, as Eyerkuss points out, an infant's heart is walnut-sized.

Although Lucy's surgery was successful, she emerged with vocal-cord paralysis.

"It damaged her left vocal cord, which is common with aorta surgery,” Dana explained. “The vocal-cord nerve wraps around the aorta.”

Because vocal cords are so integral to the swallowing process, Lucy eats via a gastrostomy tube that runs through her belly.

Throughout all this, the Peritos also are raising two young sons — 5-year-old Michael and 3-year-old Matthew.

“It’s been a very hard and emotional 11 months,” Dana said.

Last week, some good news arrived. Follow-up surgery to remove a band that doctors had placed around Lucy's pulmonary artery was a big success. Not only was Lucy able to return home early for Easter weekend, but the hole in her heart has “shrunk considerably,” Michael said. “They think it will close on its own.”

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Positive ripple effects

There are two ways to face hardship: It can knock you down, or you can use it as fuel. The Peritos chose the latter. When they came across a March fundraising event for CHOP’s cardiac research, they formed a team and rounded up $19,000 in donations. The donation drive remains open through May 30.

“I feel like we owe them so much because they saved Lucy’s life,” Dana said.

Eyerkuss has felt ripple effects from that, too.

“Many things have shaped my career as a pediatrician — becoming a mom myself, of course, changed how I take care of kids and their families,” she said. “But seeing the impact everything Lucy has been through has had on their family and our mutual friends, it’s certainly shifted the way I practice, in a good way.”

There’s more to medicine than treating the patient.

“Taking care of kids is the easy part,” she said. “It’s everything else, like supporting parents and helping them navigate everything that comes up. This reinforces that family-centered approach. It’s not just about the patient that’s in front of you. It’s about the parents and siblings and support system — everything is intertwined.”

Michael Perito’s advice for parents of young cardiac patients? Try to stay positive, and don’t be afraid to ask for help.

“We wouldn't be where we are today without our support system and all the amazing medical professionals that helped Lucy get to where she is,” he said.

Lucy turns 1 on April 22. A first birthday party is always a big deal. Two heart surgeries and $19,000 in donations later, this one takes on extra meaning.

“We’re going to have a big celebration,” Dana said.

They’ve earned it.

To donate to CHOP’s cardiac research fundraiser in Lucy’s name, visit https://chop.donordrive.com and search for the “Loving Lucy” team.

Jerry Carino is community columnist for the Asbury Park Press, focusing on the Jersey Shore’s interesting people, inspiring stories and pressing issues. Contact him at jcarino@gannettnj.com.

This article originally appeared on Asbury Park Press: Family of Rumson girl born with hole in her heart pays it forward