Zoe Cerna was like any other toddler until she turned 23 months old. Not long before her second birthday, her eyes started gradually swelling. Soon after, she woke up one morning with a dry diaper and a bellyache. Her parents knew something serious was happening, so they took her straight to the Pediatric Emergency Department at Joseph M. Sanzari Children's Hospital in Hackensack.

The Denville girl was quickly diagnosed with nephrotic syndrome, an uncommon condition stemming from damage to clusters of small blood vessels in the kidneys that filter waste from the blood. Swelling around the eyes is the most common sign of nephrotic syndrome in children.

But Zoe’s medical crisis was just the beginning of an often-harrowing journey through severe kidney disease and its treatments—including dialysis and a transplant at Hackensack University Medical Center—that brought together an array of surgeons, pediatric nephrologists—including Kenneth Lieberman, M.D., division chief of pediatric nephrology at Joseph M. Sanzari Children’s Hospital— and other specialists. Together, they shepherded the now 8-year-old back to stable health.

“Our higher need has been met at Hackensack Meridian,” says Zoe’s mother, Maria. “We’ve been blessed to work with an incredible, compassionate team.”

Short Remission From Kidney Failure

Within months of Zoe’s initial diagnosis in 2018—and after steroid treatment failed—doctors determined she had a condition called FSGS (focal segmental glomerular sclerosis), a rarer and more aggressive type of kidney damage that’s one of the most common causes of nephrotic syndrome. While FSGS is sometimes hereditary, it can also have autoimmune origins, as in Zoe’s case, when the body’s immune system attacks itself.

Treatment with tacrolimus, a drug that reduces the immune system response, brought much-needed normalcy to Zoe and her family, who were reeling from frequent hospitalizations. But the relief was short-lived: by the end of 2021, when Zoe was 5, the treatment stopped working. Once again, the little girl was in and out of the hospital with extreme bloating and other signs of kidney failure.

Dialysis three times a week was the necessary next step, but Hackensack specialists knew a kidney transplant couldn’t be far behind.

“That’s hard for any sized human, but really hard for a kindergarten kid,” says Namrata G. Jain, M.D., medical director for pediatric kidney transplant at the Children’s Hospital. “We knew she had a pretty aggressive disease because she went from fairly normal kidney function to needing dialysis within six to eight months.”

A Unique Approach to Kidney Transplant

Zoe’s case continued to pose unique challenges. Not only did her kidneys shut down, but they also spilled damaging protein that could endanger a transplanted kidney. In an unusual move, Richard Schlussel, M.D., co-director of pediatric urology for Hackensack Meridian Health, removed her existing kidneys even before a new one was found.

The procedure, done with minimally invasive robotic techniques to promote quicker recovery, set Zoe up for success in more ways than one. Dr. Schlussel collaborated with transplant doctors to ensure the cuts he made aligned with the incisions that would be needed during Zoe’s eventual transplant.

“Because her kidneys were malfunctioning like that, they were actually hurting her as opposed to helping her,” Dr. Schlussel says. “It goes against our nature to remove kidneys, especially before transplant, but it was very necessary.”

Another hiccup occurred in the search for a kidney donor. While Zoe’s parents were deemed a tissue match, other biological factors prevented their organs from being suitable. With the determined little girl’s blessing, her parents took to social media to find another living donor, and the transplant took place in August 2021.

A Full Life After Kidney Transplant

Typically, someone who receives a kidney transplant requires no additional treatment for their urinary system to work properly. But in Zoe’s case, the transplant didn’t represent a cure. As with many FSGS patients, her condition quickly recurred despite the new organ. But various treatments, including plasmapheresis—a process that removes immune cells believed to fuel FSGS—enabled Zoe to once again reach remission soon after her transplant.

Dr. Jain says that about 28% of the 32 pediatric kidney transplants performed at Hackensack since 2021 have been in children with non-genetic FSGS, and all of the patients are doing well. Plasmapheresis treatment is another standout feature of Hackensack’s nephrology program and is not widely available elsewhere.

Zoe finished second grade last June and is living life to the fullest. She and her family have traveled extensively the last couple of years—including visiting extended family in Ecuador—and the kind, creative girl loves playing with her 3-year-old brother, Santiago, and the family’s labradoodle, Rex.

Zoe takes immunosuppressants to prevent rejection of her new kidney and undergoes frequent checkups to keep tabs on her health.

“We don’t take anything for granted,” says Zoe’s father, Luis. “We want to give her the opportunity to explore different things and spend time with family. We’re also allowing her to guide us to where she wants to be. At the end of the day, she has a chronic illness, and we have to follow her lead.”

Next Steps & Resources

• Meet our sources: Namrata G. Jain, M.D.; Richard Schlussel, M.D.; Kenneth Lieberman, M.D.
• To make an appointment with a pediatric nephrologist near you, call 800-822-8905 or visit our website.
• Learn more about our nationally ranked pediatric nephrology, pediatric transplant, or pediatric urology programming at Hackensack Meridian Children’s Health. For more on our rankings.

The material provided through HealthU is intended to be used as general information only and should not replace the advice of your physician. Always consult your physician for individual care.