Like any parent, Brittany Young has scores of photos of her four children, whether they’re celebrating the holidays, visiting Disney World or just goofing around. But it’s a picture of her son Kellen at Boston Children’s Hospital that has the potential to bring tears to a viewer’s eyes. Surrounded by his care team, Kellen sits in his hospital bed, a wide smile on his face. There, amid the stuffed toys and colorful blankets, rests a seemingly innocuous item: a package of Pampers. Yet for Kellen and his family, those diapers mean so much more. They’re a sign that this little boy’s newly transplanted kidney is working just as it should.
Learning a new language
For his first 9 weeks of life, Kellen was much like any other baby. He smiled, cried and cooed — until breathing difficulties landed him in his local South Florida hospital. What was first believed to be an ordinary upper respiratory infection turned out to be far more serious. He stopped urinating, and doctors determined that his breathing problems were the result of airway pressure from severe fluid retention. He was diagnosed with congenital nephrotic syndrome, a rare condition that would eventually require a kidney transplant.
Kellen was transferred to a larger hospital in Miami, where complete kidney failure led to the removal of both of his kidneys. There, he spent 9 months on hemodialysis, taking five different blood pressure medications and trying to gain weight, to no avail. The excitement of having a new baby was tempered by the shock that Kellen would need a new kidney. “We thought that kidney disease was something only older people experienced,” says Brittany. “It was like learning a whole new language.”
‘Where we needed to be’
By the time he was 11 months old, he only weighed 11 pounds — only half of the goal weight necessary before he could undergo a transplant. His parents knew they needed to take action. “Through my research, I learned that Boston Children’s had successfully transplanted the most kidneys in children under the age of 2 and as small as 14 pounds,” explains Brittany. “I knew that this was where we needed to be.”
They had barely arrived in Boston when Brittany began to notice changes to her son’s care. Upon reviewing Kellen’s history, Dr. William Harmon made a surprising recommendation, decreasing his number of blood pressure medications from five to just one within a month. “He asked us to trust him,” Brittany recalls of the late physician. “And we did.”
Taking a deep breath
After a 6-month stay in Boston, Kellen and Brittany — now pregnant with his younger brother — commuted back and forth from a relative’s home on Cape Cod for regular checkups and near-daily dialysis appointments. But on a Friday in late April last year, there seemed to be a new wrinkle: He developed a bacterial infection in his dialysis catheter and was admitted to Boston Children’s so it could be replaced surgically. The hope for a new kidney seemed further away than ever.
Yet the very next day, Kellen and Brittany were at his regular dialysis appointment when they got stunning news. “I know this has been hard, but he’s doing great,” a nurse told her. “And I want you to take a deep breath — because there’s a kidney coming, and it looks like a good match.” Kellen received his new kidney that Monday in a procedure performed by Dr. Heung Bae Kim and Dr. Khashayar Vakili in the Pediatric Transplant Center’s Kidney Transplant Program.
Joy, not fear
Now, nearly a year later, the difference in Kellen’s health is “like night and day,” says Brittany. No longer a fragile boy, he’s running, climbing at the playground, swimming and rocking out to the Beatles — and is largely inspired by his younger brother, Daniel, who was born in Boston during the family’s stay. “Seeing him hit his milestones has been Kellen’s biggest motivator,” says his mom. “They’re incredibly close.”
Kellen, who also sees transplant nephrologists Drs. Michael Ferguson, Nancy Rodig, Michael Somers and Avi Traum, still makes regular trips north for follow-up care, but the 4-year-old remembers the hospital with joy, not fear. During a recent visit, he swung by the dialysis unit and 10 South to say hello to the nurses who cared for him. “He’s like the mayor of Boston Children’s, waving at everyone,” laughs Brittany. “His nurses remember a sick little baby and they’re so surprised to see him just running toward them. He’s so energetic now that he wears me out — and I love it.”
Learn about the Kidney Transplant Program.