We learned at our anatomy scan that Jonah’s kidneys were larger than they should be and that they were likely retaining urine. We met with the pediatric nephrology team who told us that he likely had a blockage in his urethra that could be fixed after birth and he would need to be monitored but would probably have minimal long term kidney damage. 

At 36 weeks we learned that because he was not urinating, I had no amniotic fluid and we had to be induced. Jonah was born at 36+3 and we quickly learned that it was not the blockage like they thought. His right ureter had no opening to the bladder, and his left had an enormous opening causing everything to reflux back up into the kidney. His right kidney was in bad shape, and his left was not functioning at all. 

Jonah had his first procedure at 3 days old where he got nephrostomy tubes to drain his kidneys. At 19 days he had a ureterostomy for his right kidney. Which was almost immediately followed by a UTI. We spent 46 days in the NICU and when we were released, we were home 13 days before being readmitted due to a blood infection. They never figured out the cause but thought it may have been his non-functioning kidney, so 2 days before his first Christmas, at only 2 1/2 months old he had it removed. He also had a G Tube placed at the same time. We remained hospitalized for nearly another month due to feeding issues at which time I requested a transfer to Boston as our local hospital didn’t know what to do anymore. We then spent 105 days in Boston, 2 states away from home. Jonah underwent many procedures and tests, lived on IV nutrition for months, and eventually was able to tolerate feeds directly into his intestines through a G/J tube. We came home 3 days before Jonah turned 8 months old in May of 2023.

Jonah has undergone many other surgeries and procedures in the last nearly 3 years and his kidney remained stable in stage 3B. Then in August he had hip surgery and became sick directly after the surgery. This caused his kidney to spiral into end stage renal disease. Despite all of our efforts we are now facing transplant long before we had thought we would be. 

Regardless of everything he has been through, Jonah continues to be a happy, funny, sweet little boy who never lets anything get him down. 

We are currently looking for a living donor while Jonah recovers from bladder surgery and ureter reimplantation and are anticipating transplant within the next few months.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.