The Call That Changed It All
Charnette Howard still remembers getting the call. It was August 2014 and her 10-year-old son, Nathan, had been receiving dialysis three times a week since March. His kidneys had shut down and were removed that May, and Nathan was waiting for a life-saving kidney transplant.
"It was 7 a.m., and I was exhausted," remembered Charnette, who described that year as a bad rollercoaster ride and had broken down in Nathan's nephrologist's office months earlier when she was told he needed a transplant. "I thought, 'who is calling me this early' and 'it better be for a good reason.'"
The reason was that a kidney had been located, and Nathan needed to prepare for his transplant.
The Road to Transplant
When Charnette was three months pregnant with Nathan, she and her husband Anthony learned their third child had medical complications. His bladder was so enlarged it had to be drained throughout her pregnancy, and when Nathan stopped moving at 36 weeks gestation, he was born by emergency Cesarean section.
"During Nathan's first year of life, everything was a matter of life and death," Charnette recalled of Nathan’s instances of septic shock, multiple urinary tract infections and compromised immune system.
Nathan was eventually diagnosed with prune belly syndrome, a group of birth defects involving poor development of the abdominal muscles and urinary tract problems that also cause kidney issues and often kidney failure. Present in one in 40,000 births, prune belly syndrome is a genetic condition affecting primarily boys. Nathan had difficulty eating, was not expected to walk because of his weak abdominal muscles and had his first of multiple surgeries at three months of age before spending many months in the neonatal intensive care unit (NICU).
Within a year of Nathan’s birth, his older brother Myles was diagnosed with autism, forcing Charnette and Anthony, who also have an older daughter Ehlissa, to re-evaluate their lifestyle. Charnette quit her job to care for the boys, and the family eventually decided to move from their St. Louis home.
"When you have a chronically ill child, it changes your complete lifestyle," said Charnette, who began researching hospitals with strong pediatric nephrology (kidney), trauma and transplant programs.
Their search identified Children’s Hospital of Richmond at VCU (CHoR), and the family moved east in 2008. Nathan, who also has Asperger Syndrome, began seeing CHoR's urology and nephrology specialists. When Timothy E. Bunchman, MD, Professor and Chief, Pediatric Nephrology, CHoR, met the Howards after arriving in Richmond in 2011, Nathan had severe kidney disease. Dr. Bunchman began preparing Nathan's body—and his family—for an inevitable kidney transplant.
A Team Effort
Since Dr. Bunchman's arrival, CHoR's nephrology program has twice been listed among the top programs in the country by U.S. News & World Report. CHoR's nephrology team, the sole provider of pediatric nephrology services in Central Virginia, offers general and transplant care to patients at CHoR's MCV Campus and through clinics in Fredericksburg, Williamsburg, Prince George and Richmond's Stony Point area. The team sees more than 2,500 outpatient visits and 1,500 inpatient cases a year and consults with other CHoR sub specialists including urology, cardiology, and hematology and oncology as needed. These partnerships are also important for the transplant program as many transplant patients have issues impacting multiple organs.
"The U.S. News ranking is a reflection of how our team works together to take care of patients," said Dr. Bunchman, who led the teams that completed a unique heart and kidney transplant and the first chain transplant (where multiple patients receive transplanted organs) at CHoR in 2013.
The nephrology team, which includes three full-time physicians, a nephrology fellow, nurse practitioner, nurse educator, dietitian, social worker and nurses, has grown over the last three years thanks in part to more than $1.1 million in funding from Children's Hospital Foundation. Monies have been used to recruit and retain specialists and fund an ACGME (Accreditation Council for Graduate Medical Education) approved pediatric nephrology fellowship program, which began in July 2014.
"They take good care of our family," said Nathan, who refers to the nephrology team as "Team VCU" and said his favorite part of staying at the hospital is having his own room.
Charnette described Dr. Bunchman as "passionate" and an "advocate for children" but said one of his greatest strengths is that "he realizes he can’t do everything by himself and has to have a team." She also appreciates his willingness to consult with other specialists, especially with a complex case like Nathan's.
While the nephrology team provides medical care for Nathan, other CHoR partners, including representatives from Children's Hospital Foundation (CHF) and Children's Miracle Network (CMN) Hospitals, provide social outlets and a support network for the Howards.
"It is a total approach to care for the whole family," said Charnette, who along with Anthony, has volunteered at CHF and CMN Hospitals events including the Bowl-A-Thon, Four Mile Walk/Run and Radiothon. "We get an outing, a chance to meet other families and feel not so alone."
A Promising Prognosis
Since his transplant last summer, Nathan has gained weight and started eating more often, including many foods like chocolate and red meat that were previously off-limits. His insatiable thirst has been replaced by Charnette's regular reminders to drink water, and although he will need a catheter his entire life, he will learn how to manage that aspect of his care in time.
For now, Nathan enjoys his fifth grade math and science classes, building with Legos®, watching movies and playing video games. He loves to ride bikes, play outside with his brother and pretend to be his favorite superhero, Captain America.
"Nathan is a very determined little boy," said Charnette. "He won’t be slighted or told he can’t participate. He has shown you can live if you are courageous enough to accept challenges."
"The result of any outcome is the relationship with a patient's family and healthcare team," said Dr. Bunchman, who has overseen nearly 20 pediatric kidney transplants at CHoR. "Nathan's prognosis is great. He's never looked back."