Against the Odds: Kidney Transplant

Meet Zaylee

4-year-old Zaylee got to experience the ocean for the first time this spring, and she’s obsessed. “If she could live in water, she would,” said Sydnee Sullivan, Zaylee’s mom .

This water-baby is an exuberant talker who also loves playing outside and helping her mom and grandpa in the garden. But when Zaylee was born, she wasn’t expected to survive, let alone grow into the happy and playful kid she is today.

At Sydnee’s 20-week prenatal appointment, her amniotic fluid was low, and her physician wasn’t able to see Zaylee’s kidneys developing. She referred them to a specialist in Wichita, who identified more potential obstacles, including heart, arm and hand differences.

“It seemed like every appointment it was something new,” said Sydnee. The specialist sent them to the Elizabeth J. Ferrell Fetal Health Center at Children’s Mercy Kansas City  where Zaylee’s development could be monitored closely.

VACTERL impacts multiple systems

Zaylee was born in  of 2019 with just one abnormally developed kidney, which was causing significant problems. Her kidney challenges are part of a constellation of symptoms known collectively as VACTERL. Babies born with VACTERL have some combination of vertebral abnormalities, anal atresia, heart defects, tracheoesophageal fistula and/or esophageal atresia, kidney abnormalities and/or limb anomalies. The cause of VACTERL association is unknown, and it affects 1 in every 10,000 to 40,000 live births.

“VACTERL is one of the reasons I’m a nephrologist,” said Judith Sebestyen VanSickle, MD, MHPE, FAAP, FASN, Zaylee’s nephrologist. As a resident, on her first night on the renal (kidney care) floor, she cared for a patient with VACTERL who needed to start peritoneal dialysis. It made an impact.

“It’s easy to miss renal abnormalities at the beginning because they don’t cause any symptoms; doctors are usually more focused on other vital organs, such as lung or heart conditions,” said Dr. VanSickle, who appreciates the close collaboration between different specialists that Children’s Mercy provides.

“When you have a child with several medical complications, the key to success is to have good communication among disciplines,” said Dr. VanSickle. In addition to a collaborative, comprehensive care team, she also credited Zaylee’s family for their consistent support. “Sydnee, Zaylee’s mom, has become the best advocate and an essential part of the care team,” said Dr. VanSickle.

With the love of her family, Zaylee fought through her challenging early days and began the corrective surgeries that would improve her ability to thrive in the future.

Time for a new kidney

“We knew that she had impaired kidney function from her birth,” said Dr. VanSickle. “But she was able to get her heart surgeries without requiring dialysis. We started to talk about end-stage kidney care in March of 2022. Fortunately, she was able to maintain the same kidney function until the end of that year.”

Zaylee’s kidney transplant evaluation was more complex because of her other medical conditions, so the team started the process early.

“Every surgery was worrisome because of what it could do to her kidney function,” said Sydnee.   They went into the emergency room on Thanksgiving of 2022 and were transferred back to Children’s Mercy. Zaylee’s colon had stretched so thin that it was susceptible to bacterial infection, and she became septic.

“We almost lost her,” said Sydnee. “She was on life support.” Once again, Zaylee persevered and regained her strength, but her original kidney never recovered.

“With that acute hospitalization, unfortunately, she went on hemodialysis ,” Dr. VanSickle said. “After we stabilized her, she recovered extremely fast, and she was activated on the pediatric kidney transplant list.”

Sydnee and Zaylee drove to Children’s Mercy three days a week for dialysis while they waited for the right donor. It was an intense season, with extensive travel time and multiple kidney offers that weren’t the best fit. Sydnee said the nephrology team kept them positive.

“They feel like family now,” said Sydnee. “ was her absolute favorite dialysis nurse.”

Finally, the day arrived. Richard Hendrickson, MD, FAAP, FACS, pediatric surgeon, performed Zaylee’s kidney transplant on May 2, 2023.

True to form, Zaylee bounced back from the surgery quickly. “Within two days of the transplant, she started eating, which was crazy,” said Sydnee. “You could see the color in her skin was so much better.”

The team celebrated with Zaylee’s first cupcake. Because of all her challenges, Zaylee hadn’t had much experience eating solid foods. Getting to dig into frosting was a big deal!

Finding new balance

One year later, Zaylee and her new kidney are doing well. “She has grown so much since her transplant,” said Sydnee. “It’s crazy.”

They are adjusting to her immunosuppressive medications, which are time-released and require a strict schedule. They had a bit of a bumpy winter during virus season (Zaylee caught both RSV and norovirus and came to Children’s Mercy to get rehydrated), but things calmed down as they approached her first transplant anniversary this spring.

“Each transplanted solid organ requires special attention, due to different immunological presentation of the donor’s major histocompatibility complex (MHC) system, known as the human leukocyte antigen (HLA), which plays a vital role in rejections,” explained Dr. VanSickle.

“Transplanted kidneys display more of the HLA with higher risk for rejection. However, with young children, over immune-compromised  status also carries the risk of severe infectious diseases,” said Dr. VanSickle. “It’s a balance.”

Zaylee has lab draws at home every other week and remote or in-person follow-ups every month with the kidney team. They make a point to visit the dialysis team when they are back in Kansas City.

“Other than making sure she gets her medications on time and her lab work done, I guess you’d say she has a normal life,” said Sydnee. “It’s normal for me; I’ve done it since the day she was born!”

Zaylee’s care team is now focused on helping her hit developmental milestones. This collaborative effort includes Nephrology, Colorectal, Heart Center, Orthopedic and Developmental and Behavioral Health specialists, in addition to support from social workers, pharmacists, nutritionists and more.

“We’re very proud that we are able to address not just her kidney care, but also continue to guide her complex care,” said Dr. VanSickle. “This is why our outcomes are excellent: due to attention to detail to provide holistic care to every child!”

“It’s been a long, long journey, but Zaylee’s doing it,” said Sydnee. “She’s overcome everything thrown at her.”