Patient Story: Double the Miracles: Alexys’ Story

Born with polycystic kidney disease, Alexys continues to receive expert care from Rady Children’s.

By Erica Gadbois

“I found out when I was 28 weeks pregnant,” begins Brittney Lanzarotto as she recounts the moment she learned her now 6-year-old daughter, Alexys Mejia, would face some major health battles from the moment she was born.

During a routine ultrasound, Brittney’s physicians determined that Alexys would be born with polycystic kidney disease (PKD), a genetic disorder in which the kidneys fill with cysts. Depending on their size, the cysts can dangerously alter the shape and size of these vital organs, in turn partially or wholly compromising normal kidney function and leading to failure. From that pivotal visit, Brittney was placed on hospital bedrest, and preparations were made for Alexys to be transported to the neonatal intensive care unit (NICU) at Rady Children’s Hospital-San Diego as soon as she was born. Seven weeks later, Alexys arrived, and was placed under the care of the NICU team and Nadine Benador, M.D., director of the pediatric dialysis and apheresis programs at Rady Children’s and clinical professor of pediatrics at UC San Diego School of Medicine.

The newborn needed a ventilator to help her breathe, and a feeding tube to eat. Providers also “quickly made the decision that they’d have to put her on dialysis because she wasn’t making urine. That started her numerous surgeries at just two days old,” Brittney recalls. Alexys underwent a procedure to receive a catheter for peritoneal dialysis (PD), which fills the abdomen with a sterile solution comprising salt and sugar. The solution sits in the abdomen for varied timeframes, depending on the patient’s needs, and is then drained to remove toxins typically expelled during urination. However, she wasn’t responding to PD as anticipated, and received a hemodialysis catheter as well.

Brittney says hemodialysis worked for her daughter, “but her kidneys kept getting bigger and bigger and filling with more and more cysts. They were getting so big that her stomach started to rip.” Faced with no other options to give her a chance at life, Dr. Benador made the recommendation that Alexys have both of her kidneys removed. “When they brought that up to me, they only gave a 50 percent chance of her surviving. But that was all we could do. And I couldn’t let her suffer,” expresses Brittney. She would eventually need a transplant, but to everyone’s relief, Alexys handled surgery like a true fighter.

Alexys’ feeding issues, however, continued. She often refused to eat, and when she did, she was rarely able to keep food down. To ensure she got the nutrition she needed, she had a gastronomy tube (G-tube) implanted in her abdomen, and physicians performed a fundoplication procedure, which wraps the upper part of the stomach around the lower esophagus to prevent regurgitation. With multiple tubes, incisions and catheter ports healing on one tiny stomach, PD became too much for Alexys, and she returned to hemodialysis once again. But —she was finally able to go home with her family.

“After all of that … she had multiple infections of her liver [over the years],” Brittney says. PKD goes “hand in hand with [the] liver,” and it, too, would fill with cysts. “She would get sick, she would need to be hospitalized, she had uncontrollable fevers, couldn’t hold her food — that was the biggest struggle prior to her transplant. The dialysis part was ‘easy;’ it’s straightforward. The liver is something a little trickier.” Because of her repeated struggles, it was determined that in addition to a kidney transplant, Alexys would also need a liver transplant. Although her family wanted her surgery completed at Rady Children’s, the Hospital does not perform double kidney-liver transplants at this time. However, Brittney says Dr. Benador and her team helped them navigate the process of finding the right facility and ensuring Alexys got what she needed. “Without that, she probably wouldn’t have made it. Her liver was so, so sick.” She also recalls seeing her daughter’s liver —discolored and four times larger than it should have been — when it was removed. Brittney says Alexys didn’t even start walking until she was 3 because of how off-balance the enlarged organ made her body.

Alexys was officially listed for kidney and liver transplants, and they chose a hospital for her surgery.  When they got the call that Alexys had a match, it was a day Brittney will never forget. “The week that she got her transplant, she was actually in the hospital [at Rady Children’s]—right around her birthday. The day we got discharged, I pulled into my driveway and they said they had a donor.” Because they had been notified before, only to find the potential donor wasn’t a viable match after all, “I had that in my head [and that] it still might not be,” recalls Brittney. But this time, the stars aligned. They made the eight-hour drive from their Chula Vista home, and Alexys received her new, healthy organs on March 25, 2017. In spite of the exhaustive and complex surgery, Alexys recovered exceptionally well, and was able to return to San Diego in about a month.

Back at home, Alexys receives regular kidney monitoring and care with Dr. Benador and transplant coordinator nurses including Alisha Harrison, R.N., and Erin Phebus, R.N., as well as liver monitoring with Kimberly Newton, M.D. According to her mom, she’s thriving. “It’s crazy to just see what a transplant does; how much it changes a person,” marvels Brittney. “Before, she was always smaller, [and] now she’s catching up to kids her age.” She’s also worked up quite the appetite since her transplant. “She eats a lot now,” Brittney says with a smile, and hydrates to keep her transplanted kidney healthy with the help of her G-tube. “Just the amount of water she has to drink — she would not be able to drink all that water [without her G-tube]!” Brittney exclaims. Understandable, as Alexys needs about two liters of water a day.

“It’s almost good that [all of her health issues] happened to her when she was young,” Brittney continues. “Now, there’s no stopping her!” Alexys is always on the move, funneling energy into activities including gymnastics and t-ball. Her mom notes she knows how far she can push it — except maybe when it comes to one athletic aspiration. “She even wants to do wrestling … Dr. Benador would not let her do that!” Brittney laughs.

Published March 2019