Brayan’s name means strong. Before we ever found out about his diagnosis, we had that name picked out and now we know exactly why God put that name on our hearts.
When I was 18 weeks pregnant, we got a phone call stating that my bloodwork had come back and it was showing some signs as abnormal. We really didn’t think much of it, we just went to the appointment after that. In the ultrasound room, the lady didn’t say anything at all. She just pointed out his feet, head, and hands. After that, they sat us in a room and said the doctor will be right with us. Still thinking nothing… The doctor entered the room and just started telling us everything she saw on the ultrasound.
What she saw was Brayan’s kidneys, ureters and bladder were really large, but his ribcage area was very small. She said he probably has two things going on: one being a bladder obstruction and two being prune belly syndrome. Since his ribcage area was small, they said he would most likely have trouble breathing on his own because they looked underdeveloped. She went on to say that most babies with this condition don’t make it. When I heard those words, my mind went completely blank and I don’t remember anything she said after that. My husband and I were very distraught. They then referred us to Vanderbilt Children’s Hospital. We saw them once a week until Brayan was born.
They found some new things while we were being seen at Vanderbilt, but thankfully one of them healed itself before he was born; the other two things he was diagnosed with is hip dysplasia and the absence of the septum pellucidum which is a part of the brain. This affects the structure of the brain. It’s missing from the middle of the brain. Symptoms of this may be learning difficulties, seizures, and his vision. Thankfully, the major symptoms have never come about. He is a little delayed, but that is to be expected with everything that he has been through. Brayan is so resilient and has truly blown us out of the water with his capabilities. This condition comes with other findings: Brayan has optic nerve hypoplasia short optic nerves, which causes issues in eyesight. This diagnosis has not caused him any issues so far, but the doctors will be following him throughout his whole life.
The hip dysplasia stemmed from the prune belly syndrome. It was caused from being in the womb and him not having enough room to form into the sockets. They said he would eventually need both hips worked on. The doctors decided to give it the go-ahead when he was one year and four months old. They had to make him a special cast due to him having a dialysis catheter and G-tube. He couldn’t have a normal spica cast. He had to have an opening in the front for access. The hip dysplasia surgery was the hardest to watch him go through. He was in so much pain that he couldn’t sleep for several days. We were at the hospital for nine days after his surgery and on Mother’s Day. It was my second Mother’s Day in the hospital with him.
Directly after the surgery, we were waiting to speak to the surgeon. He finally walked in and said it didn’t go as expected. He was able to completely fix Brayan’s right hip, but not easily. His bones kept breaking when he was placing the plates on his femur. Due to that happening, he wasn’t able to fix the left hip. He was only able to get half the left side done so all in all, he will have to have the hip surgery again to finish the left side. Hopefully the next time it won’t be as bad on him. The doctor wants to wait until after his kidney transplant to finish because he doesn’t want to risk more broken bones. The surgeon said Brayan’s bones were essentially like an 80- to 90-year-old person’s because of his kidney disease.
When I was 27 weeks pregnant, we went for a normal ultrasound. The doctor came in afterwards and said I know this sounds crazy, but you hardly have any amniotic fluid. The next words he said scared me, but I kept it together. He said we may have to deliver today if he is in any sort of distress. They monitored Brayan for several hours and were comfortable with sending me home. They monitored him until I was 37 weeks pregnant. We had a planned C-section because they didn’t want him under any stress if I were to have a natural birth. On January 3, 2022, Brayan was born at 9:55 AM. I saw him for a second, and then they quickly took him for monitoring. That day was sort of a blur for me, but I just remember being so happy we had a beautiful baby boy! I was not able to see him for another eight hours. It didn’t seem strange to me until later that I couldn’t hold my baby right away, but I understood why. When I finally got to hold him, it felt so surreal I didn’t want to leave his side. It’s just weird leaving your new baby in someone else’s care that you don’t even know. Brayan spent 18 days in the NICU and we left to go home about three days after having him. He came home on January 20, 2022. We were so excited we finally got to come home with our new baby and that at the same time he was in pretty good health, nothing major.
He did very good at home. At about four months old he got his second UTI, so they decided on surgery to hopefully fix it. The surgery was for ureterostomies, which are two small holes right below his belly. That would be how he would urinate and still is. He currently only urinates out of the left hole because that is the only kidney that has any sort of function.
At six months of age, Brayan stopped wanting anything by mouth and he was vomiting a lot. We had several trips to the ER for hydration before they decided to put in an NG tube, the feeding tube that is inserted through the nose. He had that for several months, nothing helped or changed with his eating/drinking so they then decided it was time to go with a more permanent feeding tube called the G-tube, which is surgically placed in his belly. The same day they placed his G-tube they also placed a peritoneal dialysis catheter. The dialysis catheter wouldn’t be needed for three more months, but they knew it was coming because Brayan’s lab work wasn’t looking very good. The results of his bloodwork would explain why Brayan always looked pretty sick and felt sick.
In January 2023 he started dialysis. I trained for five days at the Vanderbilt Dialysis Clinic. We currently do it every night and it has made a tremendous difference. He feels so much better and has been able to grow. Since it is now 2024 and Brayan met the requirements for a kidney transplant, they were able to send in the referral! Now we are waiting on a living kidney donor and decided to partner with COTA for our transplant journey!
COTA assists with transplant-related expenses. In honor of Brayan McCormack, please consider donating to COTA. The thing I love most about COTA is they will follow Brayan throughout his entire life. COTA funds will not only help now, but also for future transplants Brayan may need. Transplants only last 20 to 30 years so therefore he will need another one.
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.