Meet Kid Captain Gavin Miller
Gavin had his first surgery still in the womb; he later underwent a kidney transplant at University of Iowa Stead Family Children’s Hospital shortly after turning 1.
Gavin Miller has been a fighter since before he was born.
“We were very excited to learn we were expecting twins,” Gavin’s mother, Jenny, recalls. “However, early in the pregnancy, ultrasounds showed Gavin was not releasing urine properly. We were forced to make a decision no parent should ever have to make: to continue the pregnancy or terminate. The latter choice was never an option for us, so we proceeded with a very difficult pregnancy.”
Two shunts were placed in utero at a Des Moines-area hospital to help drain Gavin’s bladder, but ultimately, both fell out. Jenny was referred to University of Iowa Hospitals & Clinics, where Gavin and his twin brother, Brayden, were born. Both boys were admitted to the neonatal intensive care unit (NICU) at UI Stead Family Children’s Hospital, where they stayed for six weeks.
Brayden experienced no major health concerns, but Gavin had a rare birth defect called prune belly/triad syndrome – also known as Eagle-Barrett Syndrome – characterized by undeveloped abdominal muscles, undescended testicles, and an abnormal, expanded bladder.
“It gets its name because really, his stomach kind of looks like a shriveled prune, because there's really no abdominal muscle there,” Jenny says.
“Jenny was pretty much over there full time and I came when I could,” her husband, Jason, remembers. “I knew both babies were in good hands over there, and I knew Jenny was with them.”
Once at home, Gavin had to gain weight before he could receive a needed kidney transplant.
“Twenty-two pounds was the magical number,” Jenny recalls. “He had the transplant on December 10th, after he just turned 1.”
Jenny’s mother – Gavin’s grandmother – was the living donor. Jenny also was a kidney match for her son, so it was decided she could potentially donate a kidney at a later time.
“They always told us that a transplanted kidney would probably last for 20 years,” Jenny says. “It's been about 12 years, so we're just starting to see some of the signs of age.”
“We were told early on that if all goes well a transplanted kidney would hopefully last until Gavin’s teenage years,” Jenny says. “It’s been about 12 ½ years and his kidney is starting to show more signs of losing functionality, and we are nearing the time when another kidney transplant will be needed.”
Over the years, Gavin has undergone numerous procedures at UI Stead Family Children's Hospital, including abdominal wall reconstruction when he was 3 and hospitalizations for
pneumonia and other health issues. His immunosuppression medications help suppress rejection of his transplanted kidney but make him more susceptible to infections.
More recently, Gavin was diagnosed with asthma and has undergone cardiology tests. He started infusion treatments to reduce antibodies to help prevent rejection of his transplanted kidney.
Gavin’s parents say they are grateful for the expertise of his care team.
“A lot of times we don't think of questions when we're right there face-to-face, but then afterword we have a million questions,” Jenny says. “They spend as much time as they need to answer our questions.”
Jason describes his son as a “kind, sweet, caring kid. He's very brave.”
“He is a miracle and a constant reminder to us how precious life is,” Jenny adds. “He never complains about his conditions and lives his life to the fullest every single day, no matter what he is going through. He is grateful that he has been given his chance at life and never takes it for granted.”
Now 13 and in eighth grade, the Ogden boy plays basketball and golf, participates in chorus, plays drums in band, and is football team manager.
Patient Stories
