At the tender age of nine years old, when many young boys are signing up for Little League, Adam Couture was told he would need a kidney transplant.
Adam’s mother, Janeen, knew something was wrong when her son’s demeanor began to change and he started exhibiting very aggressive behavior at his day care.
“He would get into a rage, he wouldn’t comprehend what was being said to him and he would look right through you,” Janeen recalls. When she took him to his pediatrician for an evaluation, blood tests revealed that his iron was very low and his blood pressure was high. He was referred to MassGeneral Hospital for Children (MGHfC) where on his fifth birthday he was diagnosed with kidney disease.
Adam had a transplant nine months later in July of 2006. He was supposed to receive a kidney from his mother’s aunt, Melody, but four days prior to the scheduled surgery, the doctor called saying they had a deceased donor that was a perfect match. He was transplanted right away, and all went smoothly.
Then in December, Adam contracted a virus called cytomegalovirus (CMV) and was hospitalized for the entire month. In an effort to help his body fight off the infection, his clinicians lowered his immunosuppressant medications. Adam eventually overcame the infection but the drop in his medication caused his body to slowly start rejecting his donated kidney.
By March of 2009, Adam’s kidneys were no longer functioning, and he had to go back on dialysis. In May, his transplanted kidney had to be removed. Adam eventually became sensitized, a process by which the body’s immune system reacts against antigens that are not its own, in this case of the transplanted kidney. Melody again volunteered to donate her kidney and a surgery was scheduled, but it was discovered that Adam had developed antibodies from a previous blood transfusion that were no longer compatible with those of his aunt. The surgery was called off.
“The immune system is there to recognize antigens that are not one’s self. We give immunosuppressant medications to try and prevent this process, which leads to rejection,” explained Dr. Avi Traum, medical director of the Pediatric Renal Transplant program at MGHfC. “However, in spite of our best efforts, the immune system can still undergo this process and over time becomes sensitized. Antibodies are another way the immune system fights foreign antigens, and that’s what happened in Adam.”
Dr. Traum introduced the Coutures to the New England Program for Kidney Exchange (NEPKE), a program run by the New England Organ Bank. NEPKE allows patients with kidney failure who have a willing but incompatible live donor to "exchange" kidneys with another incompatible pair, so that both recipients are transplanted. They signed up for the program with Adam’s aunt and eventually found a pair that matched.
Within three weeks of finding the right match, the surgeries were scheduled: Adam and his donor at MGHfC and Melody and her recipient at Lahey Clinic.
“I was so relieved,” says Janeen of learning that Adam was going to receive a kidney. “It was encouraging to know that there was potential light at the end of the tunnel, and that it could all be over soon.”
The surgeries were a success and were followed by quick recoveries. Today, Adam is a healthy, happy boy whose energy level matches that of his friends.
“He is doing awesome,” says Janeen, noting that his blood pressure – which had always posed the most problems for Adam – is normal and that he can eat the same foods and play the same games as his peers without becoming sick or tired. “[The difference] is like night and day.”
“We’re extremely pleased with Adam’s outcome,” says Traum. “Thanks to programs like NEPKE, we were able to give Adam the quality of life every child deserves.”