Fixing Lucy’s Broken Heart

Fixing Lucy’s broken heart

1 in 100 children is born with a heart defect. This one is named Lucy.

Before Colin and Charlene Noonan finally got to bring Lucy home, they endured the kind of heart-break most new parents can only imagine. Their tiny daughter would have to fight the battle of her life from day 1. Her victory became a tribute to the memory of another 1 in 100 whose name they will always remember — Weston.

Before Lucy, a crushing loss

In April 2018, a 20-week anatomy scan revealed more than just their first baby’s gender. The Noonans sought a second opinion at Phoenix Children’s Hospital. They discovered the tiny boy they named Weston had cardiomyopathy, a heart defect that makes it difficult to pump blood throughout the body.

“We were shocked and devastated,” said Colin.

The couple said hello and goodbye to their stillborn baby boy at 27 weeks. During their grief, the Noonans partnered with the Heart Center at Phoenix Children’s to undergo genetic testing. Their team discovered Colin was, in fact, a carrier of two gene mutation variations that cause potential cardiac problems. Again – shock. There were never any symptoms of his mild cardiomyopathy.

So Colin, too became a patient at Phoenix Children’s under the care of Wayne Franklin, MD, Director of the Adult Congenital Heart Disease Program. After losing Weston, the Noonans worried future children were at risk for the same problems, but they decided to try again.

Sweet Redemption

“We were scared but hopeful,” said Charlene. She’s part of the Phoenix Children’s family in more ways than one as a nurse in the Pediatric Intensive Care Unit (PICU). Their sorrow turned to joy when they learned she was pregnant with Lucy Jo.

While initial reports to the Noonans indicated Lucy’s heart was healthy, Colin and Charlene decided to see Dr. Lindblade — their fetal cardiologist at Phoenix Children’s —again. “It was right there in the fetal echo ultrasound,” he said. Lucy’s tiny heart too, showed significantly decreased functioning – in the ‘squeeze,’ he explained.

Because her diagnosis was so similar to Weston’s, they feared the worst. But they turned to each other for comfort, and hoped for the best.

Colin says he’ll never forget the day Lucy was born in September 2019. “After all we had been through, all I could feel was relief. It was sweet redemption.”

In this corner – Lucy Lovers

Lucy’s tiny heart was stronger than expected, but her team decided to make the repair she needed sooner than later. So at just 4 weeks old, Lucy underwent her first open-heart surgery, a risky procedure for any fragile newborn. Her parents held onto their faith, and their tribe of “Lucy Lovers” – friends, family and their expert team.

And it worked.

As she recovered over the next four months Lucy alternately navigated successes and setbacks, including a punishing complication when her lymphatic system began leaking into her chest.

“This is when we lose her, I thought,” said Charlene.

But their tiny warrior shocked everyone again. The infection healed faster than expected, and Lucy was given the green light to go home. After 120 days at the Hospital, “we couldn’t wait to bust out,” said Colin.

The Noonans say they’re grateful for the incredible care they received. But Dr. Linblade says the Noonans’ encouraging spirit made an impact on the team, too.

“I’ve walked away a different person knowing Colin and Charlene. It’s an honor and privilege to walk with them through the rest of Lucy’s life,” said Dr. Lindblade.

 

Generous philanthropy funded the expanded Cardiovascular Intensive Care Unit at the Heart Center at Phoenix Children’s where Lucy received expert care. Innovation and family-centered care require robust donations from a generous community. Give today, for their tomorrows.