Girl gets new heart, kidney in meticulously planned same-day surgeries at MUSC

In a first for the MUSC Shawn Jenkins Children’s Hospital, surgeons transplanted a new heart and a new kidney into a 12-year-old girl on the same day. Skylar Brown, a horse-loving, wise-beyond-her-years sixth grader, is now home in Columbia with her family.

Her mother, Courtney Johnson, is grateful that Skylar will have the chance to live a normal life, growing up in a home where faith in God has helped sustain a family and a girl who have been through so much. Johnson said faith in Skylar’s medical team has been important, too, through celebrations, setbacks and, ultimately, the day when two carefully planned operations would save her daughter’s life.  

 

That “family” includes the No. 2 children’s cardiology team in the United States, a highly ranked kidney team and many other people who cared for Skylar during her months in the hospital.

Cardiothoracic surgeon Minoo Kavarana, M.D., said everyone involved worked together like a family to plan two operations, each with its own risks, to save Skylar’s life. “It's not just one surgeon doing everything. It's truly MUSC and Shawn Jenkins Children's Hospital all coming together. All working together in synchrony. And I think that's special. You won't see that everywhere.”

Skylar’s transplant journey began more than a year ago, following an illness that strikes many people – but isn’t usually followed by what happened to Skylar.

Winter break 2023

Skylar’s mother said her normally energetic daughter, who loves not only horseback riding but also basketball and softball, became much less active than usual in late 2023. It was an early warning sign of much more serious health concerns to come.

 

“She had the flu and pneumonia. And so once she recovered, we started to notice changes with her appetite. Her pediatrician said to us, ‘Well, she was still recovering from the flu and pneumonia, so give it some time.’ Then Skylar came to me, noticing that her feet were very swollen. And so we really wanted to get some answers about what was really going on,” Johnson said.

One answer came in the form of a chest X-ray. It showed Skylar had an enlarged heart. That led to an echocardiogram, which showed she had cardiomyopathy. That’s a serious heart condition that can be inherited or caused by another factor such as an illness. To this day, doctors still aren’t sure what caused Skylar’s case. They just know it took a devastating toll on her.

Skylar’s mother said the day they got that diagnosis, her daughter checked into the MUSC Shawn Jenkins Children’s Hospital. Skylar needed the Charleston team’s expertise to navigate the difficult days ahead.

 

Cardiologist Heather Henderson, M.D., is part of that team. She’s taken care of Skylar since she came to the hospital. “Initially, we weren't sure if she had a viral infection, myocarditis, and we were treating her with some IV medications and some oral medications. And she really wasn't responding like we hoped she would,” Henderson said.

“Our treatment got a little bit more aggressive. Within a couple of weeks, we had to urgently refer her to talk with our surgeons.”

Kavarana, division chief of Pediatric and Adult Congenital Cardiothoracic Surgery at the Medical University of South Carolina, knew they needed to operate. “So I put in what we call a HeartMate 3 left ventricular assist device. And she did extremely well on that device and was discharged home,” Kavarana said.

That device, designed for people with advanced heart failure, would provide the circulatory support Skylar needed. Meanwhile, her family and her doctors talked about what might lie ahead for the Columbia girl.

March 2024

Skylar’s mom said at first, her daughter did well. “We went home in March.”

Skylar’s heart failure team saw her heart function improve and discussed removing the pump. Then, a blood clot forced their hand. Kavarana had to remove the device.

“And she did reasonably well. After that, we thought, ‘Wow, she's gonna be fine. She's recovered.’ Well, unfortunately, things started getting worse after that. And then she gradually developed kidney failure.”

August 2024

Kidney failure meant Skylar needed to be on dialysis, which would do the work her kidneys would normally do. After several months with no improvement, it became clear that she would need a new kidney.

And the trouble didn’t end there. Kavarana said by August, Skylar’s heart failure was so advanced that they were afraid she might not survive long enough to get the heart transplant she also needed. But the cardiology team, which had pulled off some impressive feats in the past, had another idea.

 

“We said, ‘Why don't we put in another type of heart device, which is known as an Impella, which goes in through a blood vessel in the neck. We don't have to reopen her chest.’ So I put in an Impella on the 27th of August. She did very well after that. Things looked great.”

The Impella is known as the world’s smallest heart pump. While it did its job, Skylar and her family once again leaned on their faith. “I got through it with prayer and just reading the Bible,” Skylar said.

Heart surgeon Matteo Trezzi, M.D., called her inspiring. “Her courage in the face of adversity was a powerful reminder of why we do what we do.”

That courage was clear to Henderson as well. “Sky's a pretty special girl. She had birthdays in the hospital, celebrated holidays in the hospital, but she is very wise and mature beyond her years.”

While Skylar and her family waited, her care team planned for the announcement they hoped would come soon: word that a heart and kidney were available. It wasn’t just a matter of waiting. Careful planning was required and had been underway for months. Each transplant would have its own risks, and some of the regular protocols would have to change to take additional challenges into account.

 

Katherine Twombley, M.D., serves as medical director of the Kidney Transplant Program at the MUSC Shawn Jenkins Children’s Hospital. “We met with the heart team multiple times. We reviewed their immunosuppression protocols, our immunosuppression protocols.” The hope was that those protocols would keep Skylar’s body from rejecting the new organs.

“We had to combine everything. We had to go through contingency plans of if the blood pressure drops, you have to protect that kidney, so we prefer you do A, B and C. And they were like, ‘Yeah, but we don't do A, B and C for heart transplants,’” Twombley said.

Trezzi, the heart surgeon, called that collaboration essential. “We had to meticulously coordinate not only the heart transplantation but also ensure that the kidney transplant was perfectly timed following the heart transplant. This level of complexity demanded extensive planning and seamless communication among all team members before and after the operation,” he said.

Meanwhile, Skylar faced her own challenge: staying in a hospital for weeks on end. “It was hard, but I got through it. They had different activities and caregivers and people there at the hospital that will keep you company, and that will make you feel at home there.”

November 2024

Finally, in November, the doctors got the news everyone had been waiting for: a heart and kidney were available for Skylar. Trezzi, the surgeon on call, implanted the new heart. “The heart implantation process is a marathon, taking several hours and requiring immense precision and teamwork. In Skylar’s case, her journey was further complicated by two prior heart surgeries and her reliance on mechanical circulatory support,” Trezzi said.

 

But Skylar did so well during and after that operation that another transplant surgeon, John McGillicuddy, M.D., was able to implant the kidney sooner than expected.

However, there were still some concerns. Kavarana said the new kidney didn’t work well at first. “We were afraid she might lose the kidney. But over time, her kidney picked up. Things worked better, and she’s doing really well now.”

2025

Fast-forward to 2025, a new year and a new outlook for Skylar and her family. She now has a baby brother, born during her ordeal. She’s back in school. And she was eager to get back in the saddle, which she did on April 29. “This is my third year of riding,” Skylar said.

Her care team at MUSC Shawn Jenkins Children’s Hospital, where she’s still a patient, will be watching her progress. Trezzi, her heart transplant surgeon, called her a role model.

 

“Skylar's remarkable strength symbolizes hope for all other children facing similar battles. My aspirations for her are clear: May both organs thrive, and may she embrace a life of health and fulfillment ahead.”

Twombley, the Kidney Transplant Program leader, said Skylar’s life can include not only horseback riding but other relatively low-contact sports she loves, such as basketball and softball,  as long as she keeps taking the medicine she needs for the organs to thrive and wears a kidney guard when needed.

Kavarana said it was all possible because everyone worked together to strike a delicate balance – a success that will sustain doctors, nurses and others involved in the ongoing work of saving lives in the state’s top-ranked children’s hospital.

“It is very rewarding. Because there are times where we don't have the outcome that we desire. And those are tough days and tough times. And these victories and wins for the team are very, very encouraging to keep us going.”