Frank’s story: How state-of-the art surgery made his heart ready for the playground

Thai remembers waiting for her newborn, Franklin II – or little Frank, as she calls him – to gain the strength he needed to face heart surgery at Children’s Health℠. She had been unable to pry herself away from his side, until a social worker stopped by their hospital room, sat beside her and asked when she'd last been outside.

"I hesitated. It’d been more than two weeks," Thai says. "But she encouraged me to step outside for fresh air and assured me Frank would be OK."

Leaving Frank's bedside was so hard to do because he was so fragile.

“My experience with Frank has taught me that you can’t control everything. You have to put your trust in the experts,” says Thai.

Putting their trust in a team of experts

Thai first met her care team at Children’s Health through the Fetal Heart Program when she was five months pregnant. Her OB-GYN had referred her after a concerning prenatal scan.

Physicians diagnosed her baby with heterotaxy syndrome, which caused several heart defects: double-outlet right ventricle (DORV), complete atrioventricular septal defect and pulmonary stenosis.

The team prepared Thai and her husband, big Franklin, for every possibility, including an immediate transfer or surgery after birth.

“It was so beneficial to be able to prepare – logistically and emotionally – and to move our prenatal care early on to be closer to Children’s Health,” Thai says.

At birth, little Frank didn’t need immediate medical support. Thai even got to hold him before he was taken to the NICU for monitoring.

Then, at 4 months old, during a visit to Children’s Medical Center Plano with Colin Kane, M.D., Pediatric Cardiologist at Children’s Health and Professor at UT Southwestern, Frank’s oxygen levels quickly began dropping.

Dr. Kane ordered a transfer to Dallas to stabilize him. When that wasn’t possible, the care team performed an emergency surgery to help the heart pump blood to the lungs, where it gets oxygen. Soon after, he would need an additional heart surgery and an intestinal malrotation procedure.

“Frank “the tank”, as he is affectionately called, faced many health challenges as an infant. He had surgery to place a Blalock-Taussig-Thomas (BTT) shunt when he was 4 months old, and then Bidirectional Glenn surgery just 3 months later when he was 7 months old,” says Dr. Kane. “None of it was easy on him or the family, but everyone did great through all of it.”

An unexpected 'godsend’

Then, in early 2023, Thai and her husband were introduced to a new treatment possibility for their son: biventricular repair surgery, a state-of-the-art surgery that could get Frank back to being a kid.

They began researching centers on the East Coast, unsure how they’d manage travel, work and insurance for a months-long stay.

Then came what Thai calls “a godsend.”

Nicholas Andersen, M.D., decided to join Children’s Health as Director of the Complex Biventricular Repair Program and Associate Professor of Pediatric Cardiothoracic Surgery at UT Southwestern.

Dr. Andersen is one of only a few specialists nationwide trained to perform this rare two-part surgery, which remodels a child’s heart to function normally – and Frank was an ideal candidate.

"Building new tunnels inside a child's heart is not something many people are comfortable doing," says Dr. Andersen. "But when I saw it was possible and knew the tremendous difference it could make for kids and families, I committed to a rigorous process of learning how to build 3D models to intricately understand each child's unique heart anatomy – before performing surgery. And now, I'm helping train other surgeons how to do it."

New hope after surgery

Putting their baby through two more intensive heart surgeries wasn’t easy, but Thai and her husband focused on what it would mean for Frank’s future.

“They told us this surgery could let him run across a playground and play team sports, which we couldn’t imagine before,” Thai says.

After his second biventricular repair surgery, Frank’s oxygen levels and circulation were typical for the first time.

“He’s more energetic and rambunctious than ever,” Thai said. “He goes down the slide over and over at preschool and loves to play in the sandbox. And at home, he’s so sweet with his baby sister, Tori.”

After everything they’ve experienced, Thai still can’t believe that Frank now only needs to see Dr. Kane every few months.

Helping other families in similar shoes

These days, Thai volunteers on the Children’s Health Family Advisory Network, supporting parents whose babies face similar challenges.

She loves letting new moms know they’re doing the right thing by being there for their baby, but she also reminds them of two crucial lessons she’s had to learn:

1. You have to take care of yourself.

2. Parenting a medically complex child is a lifelong journey.

When asked why she wanted to share her family’s story, Thai’s answer is simple:

“We’ve been so blessed,” she said. “We want other families to know what kinds of resources are out there to help their kids.”

Thai believes Dr. Andersen saved her son’s life.

“The fact that Children’s Health was able to recruit Dr. Andersen to North Texas – with its growing population and expanding research and care – was huge for us. And it will be huge for many other families too,” Thai says.

Learn more

Our Pediatric Complex Biventricular Repair Program is one of only a handful of hospitals in the nation to offer life-altering biventricular repair for the roughly 30% of kids with single ventricle defects who are candidates for it. And The Heart Center at Children’s Health performs more than 600 heart surgeries for kids each year, with consistently top-ranking outcomes.