Family travels over 1,000 miles for son’s heart transplant

Credit: the Thompson family.

Ten-year-old Brady Thompson spends several days a week challenging his body, often on a treadmill, through “around the world” basketball games with his physical therapist or climbing a rock wall.

He and the University of Michigan Health pediatric physical medicine and rehabilitation care team have one mission: to make his new heart stronger.

Brady’s family temporarily moved to Ann Arbor in 2023 more than 1,000 miles away from their home in South Dakota so Brady could receive a heart transplant at U-M Health C.S. Mott Children’s Hospital.

For the third grader, his transplanted heart is the key to safely doing many of the things he’s always wanted to do: play sports like football and basketball, go swimming and eat as much hot sauce as he wants.

“We went from watching him decline from a failing heart to getting stronger and having more energy every day,” his mom Terisa Thompson said. “It’s been a complete 180. There’s so much more hope and an overwhelming feeling of gratefulness.”

A complex heart journey

Brady was born with hypoplastic left heart syndrome, characterized by underdeveloped structures on the left side of his heart.

Doctors discovered he had a congenital heart disease in utero during a 20-week ultrasound. Thompson and husband, Mac, were told Brady would need three complex open heart surgeries between birth and age three.

They learned that the congenital heart center at Mott had one of the most experienced teams for single ventricle surgeries in the country. The only problem: Ann Arbor was nearly 1,300 miles away from their farmhouse in Buffalo, South Dakota.

“At first we didn’t think there was any way we could go that far,” Thompson said, noting their daughters Sydnee and Sloan were just five and seven years old at the time.

“But after doing more research about the experience and outcomes at Mott and flying out there to meet the surgeon we were confident that this was where we needed to be.”

They met with Mott pediatric heart surgeon Richard Ohye, M.D., co-director of the hospital’s congenital heart center, and were immediately put at ease, she remembers.

So the couple packed up their things and young daughters for the 19-hour car drive to Michigan where they’d stay until Thompson was ready to deliver at U-M Health Von Voigtlander Women’s Hospital. They relied on family and friends to help care for their large cattle ranch and business.

“It was a big life adjustment and scary to make that kind of move while pregnant with young kids and leaving behind so much at home,” Thompson said. “But we’d do it all over again.”

Watching helicopter leave to pick up a heart

Brady’s first two surgeries at birth and again at six months old went smoothly. After his third one as a toddler, he experienced a complication associated with the Fontan heart procedure known as protein-losing enteropathy.

It causes protein loss that can be life threatening if it affects multiple organs.

Heart medications helped him regain heart function but his family knew it was a temporary fix.

Over the next several years, Brady was monitored regularly by his local cardiologist, with constant communication between care teams in South Dakota and Michigan. But in 2022, his heart began to show signs it was failing.

“We noticed a significant decrease in energy and swelling, which likely meant his oxygen saturation was declining and he was retaining water. It no longer felt safe being that far away. We knew what was coming,” Thompson recalled.

The family returned to Ann Arbor to see Mott pediatric cardiologist and medical director of the pediatric heart transplant program, Kurt Schumacher, M.D.

He confirmed what they already knew: It was time for Brady to get on the heart donor waitlist.

So in November 2023, the family packed up again to make the long trek and settle into a rental home in Michigan in preparation for a long hospital stay.

Four days after Brady was admitted to Mott, two nurse practitioners from the congenital heart team came to their room.

“They smiled and said they had good news: ‘we’ve accepted an offer for a heart for Brady,’ ” Thompson recalled.

“My jaw dropped. We were all shocked because we thought it would take so much longer. We weren’t ready for it. Everybody was crying. There was so much joy and so much fear at the same time.”

That same day, from their hospital window, they watched as a U-M Survival Flight helicopter took off to go pick up the heart.

“That was so surreal seeing the helicopter leave, knowing where it was going,” Thompson said. “We wouldn’t have this opportunity to see him grow and get better without a family deciding to make such a selfless choice.

“We pray for that donor family all the time even though we don’t know them. How do you even say thank you for such a gift?”

That same day, Brady underwent a heart transplant with pediatric heart surgeon Vikram Sood, M.D.

The new heart was a perfect match.

“His friends will ask what it was like and Brady says ‘I was asleep and when I woke up I had a new heart,’ ” Thompson said.

Physical rehab to improve strength, endurance

Nearly five months later, his stamina continues to improve, with oxygen levels up to 98% from 78% pre-transplant.

But because of heart failure and hospitalization, Brady’s muscles were deconditioned and weak, his U-M Health physical therapist Paige Senn says.

Her job is to help him increase strength and endurance and help him get back to “easily climbing on playgrounds.”

They started with low impact activities and built their way up to more cardiovascular exercise.

His goal: to eventually beat her in their basketball games.

“He’s a rock star,” Senn said. “He’s putting in days on the treadmill at home on off days on top of all the exercise and rehab we’re doing here.”

“He’s so resilient and highly motivated and his family has been such an incredible support system. He’s making leaps and bounds in progress and working so hard, which is great because as much as I love hanging out with Brady, I want to see him be independent and doing this all on his own without me.”

Back to being a kid

Thompson remembers asking their transplant team nurse practitioner Natalie Sinicropi, N.P., what kinds of restrictions Brady may have in the future after the transplant.

Her answer: “We didn’t go through all of this to hold him back from anything,” Thompson remembers.

“We want our heart transplant patients to have the best chance at living as normal as a life as possible. Brady can look forward to being a regular 10-year-old — playing outside, participating in gym class and recess and keeping up with his friends without worry,” Sinicropi said.

“Taking care of Brady meant caring for his entire family,” she added. “His family clearly adores him and are so dedicated to his care with all the changes they had to make in their lives for him to be here.”

Brady is looking forward to enjoying new activities and especially getting to go back to regular school next fall for fourth grade.

He maintains his sense of humor and joke cracking, comparing himself to Seinfeld when people tell him he’s a comedian, his mom says.

And whenever he sees a medical helicopter, he has the same reaction: “Maybe they’re going to get a heart for somebody else.”

Written by Beata Mostafavi.

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