On April 20, 2014, Lauren and her husband, Nick, attended a routine ultrasound appointment to check on the health of their first baby, Rigby, due at the end of the summer. In the middle of the scan, the ultrasound technician quietly put down the wand and excused herself. What seemed an excruciating number of minutes later, the technician returned with a doctor, who then led Lauren and Nick down the hall into another room full of doctors and social workers. They told them that, according to the ultrasound, Rigby had a blockage of the posterior urethral valve. The backup of urine had destroyed his kidneys, and because there was no urine to produce amniotic fluid, Rigby’s lungs failed to fully develop. The doctors expected him to die upon being born.
Devastated, Lauren and Nick opted not to end the pregnancy early. They wanted to make sure that they gave Rigby every chance at life, even if it might mean difficult times ahead.
A week later, they drove from their Wisconsin home to Cincinatti, OH where Lauren underwent everything from amniocentesis to EKGs to more ultrasounds. For the rest of her pregnancy, Lauren submitted to weekly testing to monitor Rigby’s process. “Some weeks were good, some weeks were really hard. His right kidney had completely shut down, and his left kidney was almost fully destroyed. They said he’d need a transplant as soon as possible after he was born.”
After all the testing and tense waiting, Rigby was born in September of 2014. Upon his birth, he was officially diagnosed with prune belly syndrome and end stage renal failure. While the news was terrible, it wasn’t entirely unexpected. But something unexpected did happen that day: Rigby lived.
“He didn’t die after being born,” said Lauren. “Something they said that stuck out to me was that if he cries when he’s born, that’s a good sign. Well, it was a strangled cry, but it was a cry nonetheless!”
Rigby was transferred immediately to the neonatal intensive care unit where he stayed for two days. His left kidney function was down to ten percent. The medical staff said he needed to start dialysis right away, but they had to stabilize him first. To aid in the process, Rigby was transferred to another hospital that was better equipped to get him ready for dialysis.
“They kept saying we needed to get him started on dialysis soon, but he kept getting a little better every day.”
Rigby needed to reach twenty-two pounds before dialysis could begin. But after only a week in the second hospital, his condition had improved so much that he was discharged and sent home with only an NG tube–no lines, no oxygen, no dialysis.
And Rigby remains a happy and otherwise healthy boy to this day. For Lauren and Nick, the joy is inexplicable, but just underneath that joy is the reality that Rigby still needs a kidney. Thankfully, Lauren and Nick had at least one more miracle coming their way: they’d found a kidney for Rigby. It’s going to come from his dad.
“We’re excited, but also extremely nervous. I’m very nervous because both my son and my husband will be undergoing major surgery at the same time. We’re thrilled to have found a donor kidney, and it’s exciting that it’s his dad, but I’m putting two people I love on the line. It’s scary.”
Right now, Rigby and his parents are finishing up all the tests and financial considerations they’ll have to face going into this procedure. But even after the transplant, Rigby will have obstacles in his life ahead.
“Rigby’s bladder grew so large that now it doesn’t hold or concentrate urine the right way. He’ll have to self-cath himself for the rest of his life. Right now he has a hole in his belly that he urinates through. He’s on a very strict diet using a specialized formula, which has helped him get up to twenty-six pounds–more than enough for the transplant.”
In addition, Rigby will, like all transplant recipients, have to be on immunosuppressant drugs for the rest of his life to lessen the likelihood that his body will reject the transplanted kidney. His underdeveloped lungs prohibit him from coughing or clearing his through the way most of us do. These two things together make exposure to common illnesses like a seasonal cold very dangerous. Still, the ultimate result is the one that Lauren and Nick wanted in the first place: Rigby has a chance at life.
“We’re using Rigby’s story to promote organ donation,” said Lauren. “Prior to Rigby being born, Nick and I were both registered organ donors, but we now advocate for living donation. It’s become such an important thing for us. Rigby needs a kidney to live, and only another person can give that to him. I’m hoping that everyone who can will become an organ donor.”
Lauren’s hope is shared by many. I wonder–I hope not too morbidly–how many situations like Rigby’s ended in heartbreak instead of joy, and how many of those situations could have been different if we had more living donors. An adult kidney can be transplanted into a child as young as two or three (and in Rigby’s case, actually a little under two years old since he’s gained enough weight), and with modern medicine, there’s oftentimes not even a need to be a compatible donor. Science has come a long way in improving transplants as an incomparable treatment for renal failure, but science alone cannot save someone from renal failure. Only the incomparable generosity of another human being can do that.
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