“This is why we do transplants in children,” says Nephrologist Avi Traum, MD, nodding toward the energetic 2-year-old who had just affectionately catapulted himself into Dr. Traum’s arms. A recent recipient of a kidney transplant, Andrew Johnson looks every bit a typical, energy-rich toddler as he sprints up and down a hallway in the Yawkey Center for Outpatient Care at MassGeneral Hospital for Children.
“What we tell parents-- and they don’t believe us until after-- is that you’ll see increased energy,” Traum says.
Andrew Johnson (left) with MassGeneral Hospital for Children Nephrologist Avi Traum, MD.
Just five months before, Andrew received his mother’s kidney in a transplant surgery expected from the time of his birth.
At 19 weeks of pregnancy, Tara Johnson and her husband Kevin learned their baby had a blockage in the urethra, the path urine takes from the bladder to exit the body. The kidneys filter waste from the bloodstream, which is stored in the bladder until it leaves the body as urine. That urine is an important part of the amniotic fluid that surrounds and protects an unborn baby and helps it develop. Andrew’s blockage put him at risk for abnormal lung development, a condition his specialists didn’t think he would survive. The Johnsons considered having him undergo an operation while in the womb, but at that time the levels of amniotic fluid surrounding him were too high to allow for surgery.
Fortunately, Andrew’s condition improved, but the Johnsons awaited their baby’s arrival and a definitive answer to the amount of damage the blockage and buildup of waste had done to his kidneys.
Tara Johnson gave birth to Andrew just six minutes after arriving at Massachusetts General Hospital, where the Johnsons had long been receiving care. “It’s a world-class hospital, why not take advantage?” Tara Johnson says of the family’s decision to seek care in Boston rather than closer to their Gloucester, MA, home.
Within the first day of Andrew’s life, the Johnsons met Nephrologist Avi Traum, MD in the Neonatal Intensive Care Unit at MassGeneral Hospital for Children, where Andrew remained for 11 days.
A few days after Andrew’s birth, Chief of Pediatric Urology Rafael V. Pieretti, MD, operated on him to remove excess tissue, also known as posterior urethral valves, from his urethra, the passage through which urine exits the body from the bladder.
Despite the surgery, an ultrasound revealed that Andrew’s kidneys were failing due to earlier damage. Dr. Traum prescribed Andrew medications to assist in some of the functions of Andrew’s failing kidneys. The medications helped as expected, but at 10 months the Johnsons began at-home peritoneal dialysis for their son, which involves a solution being pumped into the stomach to filter waste from the blood into an external bag. The Johnsons also began exploring their options for a kidney transplant.
Andrew Johnson (left) with his Nephrologist Avi Traum, MD, and his parents, Tara and Kevin.
Preparing for a Transplant
Andrew’s parents were both a match based on their blood types, but they decided his mother would be a better fit because she is petite and her kidneys are smaller.
“I felt blessed to be able to be the one,” Tara Johnson says.
The next hurdle was Andrew’s size. He needed to be 22 lbs in order to undergo the transplant and at that time was just 14 lbs. Children with end-stage kidney disease need more calories to grow, but they suffer from altered taste. Dr. Traum recommended a nasogastric feeding tube, which connects through Andrew’s nose to his stomach, and growth hormone shots.
“Those two things really helped,” Tara Johnson says.
Andrew’s surgery was originally scheduled for December 2010, but a setback with his blood tests required the family to wait until the following March. The Johnsons prepared for the surgeries and childcare for their older daughter Kathryn, who would be at home while Tara Johnson was in the hospital for two nights.
Transplant surgeon Tatsuo Kawai, MD, operated on Tara Johnson and Dicken Ko, MD, surgical director of pediatric renal transplantation at MGHfC, operated on Andrew.
“They were both incredible,” Tara Johnson says. “These guys are great, so caring. Dr. Ko would show up at midnight, show up once or twice a day. They were just incredible, and very personable.”
Of the care team, including Dr. Traum, the surgical and Pediatric Intensive Care Unit (PICU) staff, Tara Johnson says, “They all worked together beautifully,” communicating with the family daily.
“Phoebe Yager, MD, in the PICU, she was phenomenal, she was incredible, she really made you feel part of the process, and with Dr. Traum, your opinion as the parent matters, you feel respected,” Tara Johnson says. “It’s about the people and MassGeneral Hospital for Children is just great-- it’s smaller, you get to know the practitioners. You feel like they have a real stake in Andrew’s [well-being]. They care about him.”
Tara Johnson stayed down the hall from her son in the PICU’s parents’ room, which she calls a “godsend,” because she didn’t have to drive back and forth while her son was still hospitalized. “It’s so nice, it was like a little respite,” she says of the room, which overlooks the courtyard at Mass General.
Both Andrew and Tara have recovered well, as evidenced by their energy and liveliness. Andrew sees Dr. Traum regularly for follow-up appointments and together the Johnsons and Dr. Traum are working to wean Andrew off his feeding tube, through which he still receives some of his nutrition and medication.
“Every parent worries about their children. When you have a child with a serious health issue, your worries increase tenfold,” Tara Johnson says. “Dr. Traum's compassion, empathy and responsiveness have made the past three years so much easier than if he had not been involved.
“Andrew actually looks forward to going to doctors’ appointments, which I'm sure is not the norm. It has really been a joy to work with Dr. Traum,” she adds.
Though transplants from living donors typically last 15 years before they need to be replaced, Dr. Traum has high hopes for Andrew, particularly because he received the kidney from his mother and has adapted to it well. Andrew continues to grow, physically and developmentally. This summer he enjoyed trips to the beach and swimming lessons and he began preschool this fall.
“He’s developing beautifully,” Tara Johnson says.