Mother-Daughter Kidney Transplant

At just 3 ½ years old, Clara is an explorer who loves climbing, music and singing along to her mom’s favorite Brazilian music. This ultra-active preschooler is quickly picking up Portuguese and never got the memo that pandemic babies are supposed to be shy: Everyone gets a “Hi” from Clara!

Clara has faced many health challenges in her life, including a kidney transplant in June 2022. The complications began before she was born. When an ultrasound showed multiple concerns, Clara’s parents, Vivi and Bobby, were referred to the Elizabeth J. Ferrell Fetal Health Center at Children’s Mercy Kansas City, where the team monitored Clara’s growth closely.

Clara had cloaca, a kind of anorectal malformation, that can also cause kidney complications. She was born with just one kidney, which was only functioning at 30%. Her care team, including nephrologist Nathan Beins, MD, were able to manage her kidney disease with her diet while Clara underwent a series of surgeries to treat the cloaca.

By Clara’s first birthday, her appetite had disappeared, and her kidney function had dropped to 10%. Clara needed a transplant before her kidney failed, or she would have to begin dialysis, which would mean another surgery and regular hospital trips.

In the fall of 2021, Clara’s family met with their transplant team, including Katelyn Walser, RN, BSN, CPN, solid organ transplant coordinator, and Heather Morgans, DO, nephrologist. The family learned about the transplant and living donor process.

“If we have a living donor available, we can tailor the transplant to when the child needs it,” explained Dr. Morgans.

“We prefer live donors,” agreed Richard Hendrickson, MD, FACS, FAAP, Clara’s primary transplant surgeon, citing the ability to schedule the surgery and the lower “cold time” the kidney spends outside the body. He shared that the number of living donors varies by year but averages around half of the kidney transplants done by Children’s Mercy.

But not every transplant recipient has a willing donor who is also a good match. Both Vivi and Bobby were tested for donor compatibility at The University of Kansas Hospital. Both were great candidates, but Vivi’s kidney was smaller — a better fit for tiny Clara.  

“When it’s your own baby going through that situation, you don’t really think about yourself the entire time,” said Vivi. “I was thinking about what I could do to help her get healthy.”

“Absolutely,” agreed Bobby. “It was a no-brainer for both of us. If either of us could do it, it was not even a question.”

Vivi barely had time to dwell on her own surgery as the transplant date approached. They were taking care of Clara and hosting her family from Brazil, who helped support them through the surgeries. The day arrived, and Vivi waited until the last possible minute to leave Clara’s side at Children’s Mercy.

Vivi and her mother went to The University of Kansas Hospital early in the morning while Bobby stayed with Clara at Children’s Mercy. The transplant teams at both hospitals stayed in constant contact to ensure the procedure went smoothly.

“They’ll call to ask, ‘Is it OK if we go ahead and cross-clamp the kidney,’” Dr. Hendrickson explained. “And we’ll say, ‘Yes, you’re good,’ or ‘Give us another 10 minutes.’ We work in coordination.”

The Midwest Transplant Network transported Vivi’s kidney to the circle drive at Children’s Mercy, where Katelyn was waiting to complete the check-in process and take the kidney to the operating room. Dr. Hendrickson led the surgery to turn Vivi’s kidney into Clara’s.

“It was nerve-wracking, of course,” said Bobby, of waiting to hear how both surgeries went. “But the team did a good job of reassuring us and preparing us.”

The transplant was textbook.

“The kidney started producing urine right away and did everything we expected it to do,” said Dr. Morgans.

With her new kidney working hard, Clara’s creatinine levels dropped to manageable levels that night, and she began recovering in the PICU. Meanwhile, Vivi was still at The University of Kansas Hospital healing from her donation.

“When I woke up from the surgery, first thing, I wanted to know how Clara was,” said Vivi. “I don’t care about my pain; I just wanted to leave the hospital and go to Clara. But I had to stay there for about three days.”

“I tried to get her to stay in her hospital bed a little longer, but she wanted to see her baby,” laughed Bobby.

The family was reunited after only several days apart. Clara was doing so well that she had moved out of the PICU faster than expected, but there were still challenges ahead. For one, the high dose of steroids Clara needed post-operation darkened Clara’s normally bright mood — a known side effect of the medication.

“We saw a whole new side of her personality come out,” said Bobby. “It was a little shocking, honestly, and if I were talking to other parents, I would make sure they are aware that can happen.”

As her dose tapered to a lower level, Clara went back to her energetic, sweet self. After two weeks, she was ready to leave the hospital.

“Getting to bring her home was one of the happiest times ever,” said Bobby. 
The first thing Clara did when she got home was walk inside the pantry, grab a big bag of chips and start eating.

“She had never done that before!” said Vivi. Pre-transplant, they had never seen her seek out food like a healthy, hungry toddler.

“We were just amazed,” said Bobby. “We could see the effects right away.”

While Clara was running around the day she got home, Vivi’s recovery took a little longer. Adults take more time to bounce back from surgery than kids do. Vivi’s body needed about six months to adjust to living with just one kidney. She was tired often but grateful she was able to give a healthy kidney to Clara.

“If I had another one, I would do it again!” she said. She makes sure to keep hydrated and avoid NSAID medications to keep her remaining kidney in top shape.

The family is settling into post-transplant life. Clara’s six-month kidney biopsy (which coincided with an unplanned but needed tonsillectomy!) came back heathy. Vivi and Clara’s shared kidney is doing well in its new home.

They have Clara’s labs done every two weeks and see Dr. Morgans about once a month. The three anti-rejection medications Clara is on suppress her immunity, so they stay vigilant with handwashing, especially after Clara started preschool this past winter. They’ve been monitoring her Epstein-Barr virus (EBV) levels, an infection that can cause mono, but Clara has stayed healthy.

“She’s really taken off after transplant,” said Dr. Morgans. “She’s eating more than she did beforehand. She’s growing really well. She’s always singing in the clinic! She’s a joy to take care of.”