COTA for Jones

Our Story

Jones Justin – Our Miracle Baby

In September 2023, when 14 weeks pregnant, our world was turned upside down when at a regular OBGYN appointment we were told there was an abnormality seen in our baby. The doctor said she was concerned it was a very large bladder, and she immediately referred us to a Maternal Fetal Medicine Doctor before we ultimately ended up at The Fetal Center in the Texas Medical Center. 

Our sweet baby was diagnosed with LUTO (Lower Urinary Tract Obstruction), which in essence is caused by an obstruction in his urethra, leading to a trademark very large bladder. Because the urine couldn’t exit the bladder, it caused urine to back up into his kidneys, leading to kidney damage. Due to the lack of urine (amniotic fluid) released into the amniotic sac, this causes great risk to the baby’s pulmonary development and overall lung function. 

The uncertainty was a constant throughout our pregnancy, as all care was technically “experimental” due the rarity of this condition. 

Jones was also diagnosed during our first meeting with The Fetal Center with hydrops fetalis, but just before our first fetal surgery, there were no more signs of the condition. There was “no reason” for the signs of hydrops to no longer be present – and it was just the first miracle for our Jones. 

The amazing team at The Fetal Center guided us through this incredibly scary and isolating time, caring for us as well as educating us on what life may or may not be like. Jones and Rylie underwent 3 fetal surgeries with the goal of saving his kidney function and preserving his lungs. At 17 weeks gestation, Jones had his first shunt placed, which was placed into his bladder with the goal of having a method to allow for urine to escape the bladder and enter the amniotic sac. We would ultimately undergo a total of 3 shunt placements, with the 3rd being an experimental shunt that had never been used in a fetus before. We also had over a dozen amnioinfusions completed throughout the pregnancy, where saline was injected into the amniotic sac with the goal of improving Jones’ lung development. 

Jones was born at 31 weeks 6 days gestation, and let out the sweetest cry before the decision was made to intubate him due to his increased work of breathing. This was the beginning of the most courageous fight we have ever seen anyone go through. 

Our sweet boy began dialysis at 3 days old as he was already in End Stage Renal Failure, and was on a continuous form of infant hemodialysis for 73 days while in the NICU, before being able to switch to peritoneal dialysis (PD). PD had always been the ultimate goal, because it meant that Jones could be home and get the life-saving daily treatment he needed from the comfort of his own bedroom while he slept, while waiting to be eligible to get a kidney transplant. 

Jones came home from the NICU after 126 days of defying all of the odds, and has flourished at home! There are no words to express the pride and complete adoration we have in our little warrior! Our little man came home on minimal oxygen that within 2 months he was no longer needing, and given we were initially told there was no way of knowing if he would ever be able to be off the ventilator, this was another miracle! 

Jones takes all the hardships he has to endure with a smile on his beautiful face, and lives his life to the fullest, just as every baby deserves! 

The next big step in Jones’ story is receiving a kidney transplant, and we are praying for his continued growth and ability to be referred to a transplant center in the near future! 

There are no words to express the gratitude we have to all of Jones’ doctors and nurses, as well as family and friends who supported us during this fight to get Jones to where he is today. He truly is an absolute miracle! 

We share his story to raise awareness for children with End Stage Renal Disease on dialysis, a situation that not many know about, but is unfortunately much more common than people realize. 

Jones and all the other sweet children in a situation similar to his are warriors, and their resilience is something unbreakable. They deserve to be celebrated and recognized each and every day. 

If you feel so inclined, we have partnered with the Children’s Organ Transplant Association (COTA) to help with the lifetime expenses that go along with a kidney transplant, and any donation to COTA in honor of Jones means the world to us, no matter how small. We strive to support Jones on this lifetime journey, and all donations to COTA are used exclusively for transplant-related expenses. Prayers and positive thoughts are also just as meaningful to our little family!

We also ask you to share this COTA website, not only to raise awareness for our sweet Jones’ situation, but in the hopes that it may reach another family struggling with this diagnosis, and lead them to getting more support. The support of others in this situation is something we as parents crave, not only to feel some bit of normalcy in speaking to others whose lives look like ours do, but for hope. 

Thank y’all so much for taking the time to read Jones’ story! 

With love, 
Jones, Rylie, and Justin

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.