We welcomed our sweet boy, Tomas, on Sunday July 12, 2020, at 14:14 pm. As a mom, I could not have asked for a more perfect baby. Everything was going great with Tomas until he turned 10 months old, and he had his first fever. We took him to the Urgent Care right away since his fever was getting higher. At the Urgent Care the doctors tested him for RSV, Flu and Covid. Everything was negative. The doctors offered us one last option, to have the nurse use a straight catheter to collect a urine sample from Tomas. My husband and I agreed we both were not comfortable with this option and decided to wait. The provider explained to us that if Tomas was still running a fever by the next day, we should bring him back for the urine sample. We agreed and went home with our baby. Around 2 am, Tomas woke up screaming and shaking like something was hurting him. My mom heart was aching, and I knew something was wrong with my baby. We rushed him to the Emergency Room, where they collected the urine sample, and it was confirmed he had a urinary tract infection. They prescribed him antibiotics and we went on our way. The next day we had an appointment with his pediatrician who ordered a VCUG test. The test showed a grade 2 reflux to his left kidney, and we were referred to a Nephrologist. He saw Tomas and immediately ordered an ultrasound to get a better understanding of what was going on with Tomas’ kidneys. The Nephrologist explained to us that one of Tomas’ kidneys did not develop correctly in utero, so it was very small in comparison to the other kidney. His left kidney was most likely not functioning correctly, so his right kidney was working to compensate in its place. For now, it was important for us to take care of this kidney to prevent any further damage. We were given a prophylaxis antibiotic to prevent another urinary tract infection and asked to follow up in 3 months.

After 3 months we went to our appointment thinking everything was going to be okay. Little did we know, the results of the second ultrasound would change everything for our family. My husband and I read the results online and I knew instantly it wasn’t good. I called our Nephrologist Nurse Practitioner who explained she was going to be making a referral for us to see the Genetic Specialist, as the ultrasound showed Tomas might have Polycystic Kidney Disease (PKD).

We went to our appointment with the Genetics Doctor who explained that Tomas may not have PKD, due to only one of his kidneys having a few cysts. He suggested we test Tomas for another gene mutation. Sweet Tomas had just turned one when we were told he had a mutation in the PAX 2 Gene. This explained why Tomas’ kidney had not developed fully in utero. With these findings, the nephrologist suggested we be referred to one of the best pediatric hospitals in the world, Texas Children’s Hospital, so we would have more resources to manage and care for Tomas. We anxiously awaited 6 months for our first appointment with our new nephrologist. She calmly told us that at this time Tomas’ kidney was only functioning at about 30%. He would be okay for now if his kidney function remained at 30%, but it was important to start planning for his future, which would most likely include dialysis and a transplant. All I could think was my son is only one, how could this be happening? We started seeing the nephrologist every 3 months, trying different medications to help compensate for Tomas’ deteriorating kidney, until one day I saw something alarming in his blood work. His creatinine was very elevated, and I immediately panicked. He was then admitted to the hospital for a kidney biopsy. We stayed 6 days in the hospital while the doctors ran lots of tests. The results showed more damage to his kidney than we expected. We began talking about PD dialysis or hemodialysis and kidney transplants. Tomas was placed on the waitlist for a PD catheter.

On February 28, 2023, Tomas had his catheter and G-tube placed.  After his procedure he still wasn’t feeling well, and we stayed another week in the hospital. Once we returned home, Tomas began having night feeds through his G-tube and visits for his dialysis once per week.

Tomas is currently having dialysis 6 times per week at home and continuing to get nightly feeds through his G-tube. The hospital has become a place we frequently visit, but he loves to watch the trains from the window. My sweet boy is now 3 years old, and he has taught me so much about being a mom. This chapter of our lives has been a difficult one, but Tomas continues to brighten our days. So, if it is in your heart to help our family by donating to COTA in honor of Tomas, we would be so very appreciative. You can also share his website with your friends and family to help spread Tomas’ story.

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.