Kidney Transplant

Patient Stories | Meet Caroline

Beating Complication with Compassion: Caroline’s Successful Kidney Transplant

Caroline’s medical care has never been straightforward. After spending the first few months of her life in the newborn intensive care unit at Cincinnati Children’s, Caroline, who was born with Down syndrome and a host of inflammatory autoimmune diseases, developed chronic kidney disease—a condition that only gets worse over time. 

Despite a two-hour drive from their home in western Ohio, Caroline’s family opted to keep getting her treatment at Cincinnati Children’s.

“I would never, ever, ever go anywhere else," said her mom, Lisa. 

As Caroline has gotten older, she continues to get advanced specialty care from across the hospital, including nephrologists for kidney disease; rheumatologists and orthopedic surgeons for arthritis; ear, nose and throat specialists for complex upper airway conditions; and gastroenterologists and general surgeons for bowel strictures—all in addition to support from developmental pediatrics for her Down syndrome. 

But the advancing kidney disease proved to be one of the most complicated parts of Caroline’s lengthy health history.

“As you get more progressive kidney disease, every other medical problem becomes harder to deal with,” said Charles Varnell, MD, medical director of kidney transplantation at Cincinnati Children’s. “It gets harder to process drugs, causes fatigue, and affects appetite and mood. On top of Caroline’s baseline developmental concerns, it made everything more challenging.”

Given her kidney disease, Caroline’s care team initially prepared her for a transplant just before she turned two years old. But her kidneys improved enough on their own that they were able to push off a transplant until puberty, the next time she would experience major growth that would impact her kidneys. By the summer of 2023, after complications from a surgery, it was clear that her kidneys would require significant intervention, soon.

“She was coming home from school and sleeping for hours,” said Lisa. The family spoke with Stuart Goldstein, MD, pediatric kidney specialist at Cincinnati Children’s, who had been managing Caroline’s renal care for years.

“Caroline’s parents shared that her activity and mood were decreased and variable. Caroline was not thriving as she used to,” Dr. Goldstein said. “We had a telehealth appointment and decided to move forward with advanced treatment.”

Caroline’s family talked with her care team about the options available, including dialysis and transplant. Given the need for treatment several times per week and a long distance to travel for care, Caroline’s family was keen to avoid dialysis, but that meant finding an organ donor for Caroline—fast.

“Fortunately, it was not a life-threatening situation, so we were able to be proactive enough to get Caroline through the evaluation process for transplant and avoid dialysis,” said Dr. Goldstein. “Had we waited for more overt signs and symptoms, we may not have had the opportunity for a pre-emptive transplant.”

A Living Donor Connected Through Care

Caroline and her family felt the challenges and heartbreak of trying to find a match for a kidney donation for almost a year. Coming from a large family in a small town, Caroline’s siblings, parents, friends, community members and more had all been tested but ruled out as potential matches.

But the connection Caroline needed was closer than anyone had thought. Morgan Schweinfurth, now a vascular access nurse at Cincinnati Children’s, heard about the search for Caroline’s living donor through fellow nurses she’d previously worked with in the NICU. One of these nurses, who had helped care for Caroline years ago, shared a link to Lisa’s public Facebook post with information about their search.

Being an organ donor has always been an important part of Morgan’s life. Her grandfather received a kidney donation before she was born and, having started her nursing career in the NICU, she saw many babies who she knew would go on to need transplants later in life.

“Organ donation touched our family’s hearts so closely and was always in the back of my mind,” Morgan said. “When I saw those posts from Lisa, I was overwhelmed. I knew, as a mother, I'd hope for a donor for my own daughter or loved one. After reading the entire post and comments, I was left with the uncanny feeling that I was going to be Caroline's match.”

So, Morgan began the matching process. Going through this living donor process can take time as the donor must be in outstanding health to be able to give an organ, which is one of the reasons living donor organs tend to last longer and work better. Morgan and her husband, Josh, took that time to talk through the decision.

By the time Morgan found out she was a tissue match—“as good a match as you’re going to get,” according to one doctor on the team—Morgan and Josh had taken on the hard conversations about undergoing an elective surgery for a stranger.

The night before the surgery, Caroline’s family arranged to meet Morgan and Josh at the Family Resource Center at Cincinnati Children’s.

“You don’t know where donors are coming from and we were both nervous to meet her,” Lisa said. “But I have never felt more at ease with two people in my life.

The two families also learned that Morgan’s first few weeks at Cincinnati Children’s were some of Caroline’s last in the NICU—and Morgan had likely cared for Caroline in her first months of life. 

“I was still in my scrubs from work,” Morgan said. “As soon as we all saw each other, the connection was instantaneous. Lisa was crying. I’m trying not to cry. She hugged me forever. And we all fell in love with Caroline. It made everything click.”

For Once, a Straightforward Procedure

Despite all her medical complexity, Caroline’s kidney surgery was a success thanks to extensive pre-planning.

“The transplant evaluation was complicated because of all the conditions Caroline had,” Dr. Varnell said. “We wanted to make sure all her other organs were as healthy as possible. Coordinating this care would be a Herculean effort, but it’s been doable because all these specialists work here.”

Caroline also benefited from a simpler surgery process. At Cincinnati Children’s, the living donor operating room is right next to the recipient OR, which makes the logistics for transplant much easier. After Caroline and Morgan were taken back for their surgeries, Caroline’s parents and Josh bumped into each other in the waiting room and ended up spending the entire, hours-long waiting period talking with one another and sharing updates on their loved ones.

When Morgan was discharged a few days later, she stopped by Caroline’s room to see her. Caroline patted her side with her fresh incision.

“Yep,” Lisa said. “That’s Morgan’s kidney.”

Caroline recovered well at home and was weaned off the more than a dozen medications she’d been taking after her transplant. She now feels more like herself.

“One of the things we tell parents about kidney transplant is to get ready,” Dr. Varnell said. “Their kids lose a lot of energy from chronic kidney disease, but if the transplant is successful, those children will be bouncing off the wall.”

Caroline exemplifies that bounce-back.

“She has so much more energy and is more talkative if that’s even possible,” Lisa said. “She seems more involved in the day-to-day. She’s looking forward to getting back to the things she likes to do and seeing her people.”

In particular, Caroline was excited to go back to school and see her teachers, aides and friends—and to put this chapter of her complex medical history behind her.

“We are so thrilled with where Caroline is knowing her journey,” Lisa said. “Everyone, the doctors, nurses transplant coordinator and donor coordinator, answered every one of my questions and helped me feel heard. Someone giving an organ to your child to give them life is pretty amazing. It’s scary, and they do it well.”

(Published July 2025)