Ayden's story: The warrior with a remodeled heart

Six-year-old Ayden has a lot of hobbies. He loves karate, Spider-Man, playing Roblox, riding his bike and climbing on things. And, thanks to his police-officer dad, he especially loves playing cop – and hauling everybody off to jail.

“Ayden thinks he can take everyone down,” chuckles his mom, Darla. “He’s a happy, outspoken kid. And he’s very strong – a warrior.”

“Warrior” is a word Darla comes back to again and again. Because a few years ago, doctors weren't sure Ayden's heart could keep up with his strong spirit.

A hole in her baby’s heart

The first five months of Darla's pregnancy were uncomplicated. But on her 20-week ultrasound, she started to feel uneasy when the ultrasound tech got quiet and multiple doctors came to the room.

“We see a hole in your baby's heart,” they told her, and sent her straight to cardiology at UT Southwestern. There, Kavita Sharma, M.D., Pediatric Cardiologist at Children's Health℠ and Associate Professor at UT Southwestern, explained what they could see: Ayden had double-outlet right ventricle (DORV) – meaning both of his main arteries connected to the same side of his heart – and he also had two holes in his heart.

Based on what she could see, Dr. Sharma speculated Ayden would need one major heart surgery.

But Ayden’s care journey would not be that simple.

A heart built in stages

Ayden was delivered at 38 weeks by emergency C-section.

He came out blue and his doctors immediately hooked him up to oxygen and transferred him to Children’s Health. There, the cardiology team found his heart defect was more complicated than expected: the left ventricle was smaller than normal and he had a “straddling” mitral valve with abnormal connection to both heart chambers. These features typically prevent full repair at most centers – and kids are left with a single ventricle circulation for life.

Over his first few months of life, Ayden underwent a series of procedures initially designed to stabilize his circulation. At 2 months old, he had a procedure to place a band around his pulmonary artery to prevent too much blood from flowing to his lungs. Three months later, he had Glenn surgery to reroute blood flow in his heart and allow more time before needing additional surgeries.

"We try to do as few surgeries as possible on kids born with congenital heart conditions. But sometimes we need to stage the surgeries in order to promote growth of small heart chambers so they can handle normal circulation long-term," says Joscyln Patrick, APRN, PNP-AC/PC, Pediatric Nurse Practitioner at Children's Health℠.

At 4 years of age, a new heart surgery team at Children’s Health evaluated Ayden and felt there could be a pathway to a full two ventricle repair, called biventricular repair surgery. Rather than living with only one working ventricle, as many kids with his condition do, his team was working toward giving him a fully functioning two-ventricle heart.

After Ayden’s first biventricular repair surgery, he became critically ill and developed pulmonary hypertension (dangerously high blood pressure in his lungs). His care team in the Cardiac ICU immediately treated him with medications and around-the-clock care.

"I'll never forget the day when there were about 20 doctors in the room, and everyone was trying to figure out why my baby was so sick,” says Darla. At one point, Ayden’s fever reached 108 and he required cooling blankets with ice packs.

60 days in the Cardiac ICU

Slowly, over the next two months in the hospital, Ayden got stronger, surrounded by the love of his family, including Grandma Lenora and Auntie Khawani.

On good days, Ayden enjoyed the playroom, visits from pet therapy dogs, music therapists and child life who brought moments of fun – even on hard days.

"I remember going into their room once and they were both covered in paint. It looked like they'd done a splatter room – and both Ayden and Darla looked so happy," says Patrick.

He also loved his wheelchair walks outside and the blue electric bumper car his mom bought him to drive down the halls.

Darla also leaned on the hospital's social work team, who helped cover rent and a car payment during Ayden's extended hospitalization – so her family could focus on him instead of mounting bills.

A plan A, B, C and D

Over the following year, the goal was to get Ayden stable, let his heart continue to grow, and give his body time to recover – before attempting the final surgery that would give him a normal, two-ventricle heart.

During that time, Ayden and Darla grew closer to Ayden’s surgeon Nicholas Andersen, M.D., Director of the Complex Biventricular Repair Program at Children's Health and Associate Professor of Pediatric Cardiothoracic Surgery at UT Southwestern.

“He’s incredibly brilliant and incredibly skilled as a surgeon – and also very human too. He remembers all the details about families and takes his time when he talks with them,” says Patrick.

That helps explain why Ayden describes Dr. Andersen as “his favorite.”

“I can never guarantee that biventricular repair surgery is going to work, which may be why very few surgeons are comfortable doing it,” says Dr. Andersen. “But giving kids a normal, two-ventricle heart can represent a true ‘cure’ and allow kids like Ayden, and their parents, to lead normal lives, with fewer medical needs.”

In October 2025, when Ayden was 5, Dr. Andersen determined that Ayden was ready for his final repair surgery.

Before the operation, he sat down with Darla and Lenora.

A supportive team during the final surgery

While Dr. Andersen’s team operated, Darla waited with Ayden's dad, Grandma Lenora and Auntie Khawani. OR nurses texted Darla updates every hour. And Patrick came by frequently to check on the family.

"Jocelyn [Patrick] would come to me and say, 'Mom, Ayden's doing fine' or 'Dr. Andersen is doing this part right now,'" Darla says. "They also made sure I was eating and drinking, made sure I didn't need anything – and made sure my daughter at home was OK too."

A different kid now

Ayden came out of his second biventricular repair surgery a different kid. He no longer has pulmonary hypertension and he no longer needs oxygen support.

“By building this program, we’re pushing the boundaries of medicine and technology and it’s life-changing for kids, families – and for us too,” says Patrick. It’s the highest honor to be able to walk alongside families in some of their darkest moments and then be sent a video of Ayden running at school – and not just running but helping another kid get up. You can’t help but well up with tears of joy.”

Ayden still has the pacemaker his team placed during his 2024 hospitalization, which he’ll have for life. And he still eats through a feeding tube while he works with a swallowing specialist to be able to safely eat by mouth.

But everything else, Ayden can do like any other 6-year-old. He loves to be outside, swimming, riding his bike and going to school.

“The way Ayden looks today, you'd never know what he's been through,” Darla says. “He's so, so strong.”

When asked why she wanted to share her son’s story, Darla’s eyes lit up.

Learn more

Our Pediatric Complex Biventricular Repair Program is one of only a handful of hospitals in the nation to offer life-changing biventricular repair. And The Heart Center at Children’s Health performs more than 600 heart surgeries for kids each year, with top-ranking outcomes.