Toddler Thrives After Receiving Kidney Transplant at UH Rainbow

“At our first ultrasound, doctors weren’t able to determine if our baby was a boy or a girl. They knew there was a problem with the kidneys, but the imaging wasn’t clear. After a few more appointments, they determined our baby’s kidneys were covered in cysts.

“Babies with non-functioning cystic kidneys have a 1% chance of survival. We were devastated. I dove in to research and came across an amnioinfusion procedure that could help. It was shortly thereafter we learned we were having a boy!

“Our baby boy was officially diagnosed with bilateral multicystic dysplastic horseshoe kidneys and kidney failure. Simply put, his kidneys fused together and had very little function. We sat down with our doctors to make a plan for him once he was born. We knew his survival wasn’t a guarantee. He would need a transplant, dialysis, and multiple surgeries. But his heartbeat was so strong! We never stopped fighting for our son.

“On August 29, 2019, at 7:08 p.m. Josiah Courtlin Jones, or Jojo as we call him, was born by emergency c-section. He was immediately intubated and taken to the neonatal intensive care unit (NICU). Just three days young, Jojo was in surgery to place a peritoneal dialysis catheter. He had a chest tube, broviac line and g-tube. He spent more than five months in the NICU before we brought him home.

“Discharge day was the happiest day of our lives. There were many days we thought it would be the last day with our Jojo. The journey hasn’t been easy, filled with good days, bad days, and worst days, revolving around medications and doctor appointments. We felt hopeful when Jojo was active on the transplant list. Two kidneys fell through, but you know what they say about third time is a charm?

“On April 30, 2021, our precious Jojo received the gift of longevity with a kidney transplant from a deceased donor. We are eternally grateful for this donor, as they put our son on the path to healing and hopefully a very fulfilling and long life. Today, Jojo is a growing, and very active toddler! His new kidney gave him a burst of energy and now there is no stopping him.

“None of this would be true without the amazing staff at UH Rainbow Babies & Children’s, nephrologists Drs. Emily Joyce and Christina Nguyen; pediatric urologist Dr. Jessica Hannick; pediatric surgeon Dr. Eiichi Miyasaka; the dialysis team and hemodialysis nurses; the chaplain Ms. Joan; Jojo’s NICU nurses, his pediatrician; the staff on Rainbow 5. They never stopped fighting for our son’s life. We are so thankful for each one of the angels on earth who helped our sweet boy!” – Jennifer Pelly, Jojo’s mom

More than 1,900 children under the age of 18 are awaiting the gift of life. That is why during National Donate Life Month, we also recognize National Pediatric Transplant Week. Join us in wishing our friend Jojo a happy first kidneyversary, and recognizing all those waiting for a transplant around the world.