I would like to take this opportunity to introduce you to a sweet family that is facing hardships that I don’t think any of us can even imagine. Kaila and Vince met in high school in Daphne, Alabama, and that is where the story begins. When Vince and his family moved to Gonzales, Louisiana, during their junior year, the relationship did not end but instead changed to a long distance one. After graduation from high school, they both enrolled at the University of Louisiana Lafayette. Throughout their 4 years in Lafayette, their relationship continued to grow. I have had the opportunity to see these 2 young people be high school sweethearts, attend college, get adult jobs and fall in love. They married, bought a house and Gray was born June 6, 2019. I present the story of Gray written by his parents. We humbly ask for your prayers and financial donations to COTA in honor of Gray that you would like to donate.
The beginning of our heart journey with Gray began with a trip to the hospital that was completely unrelated to his heart. Gray has worn glasses since he was two and during one of his routine eye exams, the ophthalmologist saw inflammation of his optic nerves. Over the next several weeks following this appointment, Gray’s eyes were rechecked and images of his optic nerves were taken. Unfortunately, the images were not clear enough and therefore an MRI was recommended. Due to the fact that Gray is 4, he would need to be sedated for the MRI and he was sent to University of South Alabama (USA) Children’s and Women’s Hospital in Mobile, Alabama.
On June 26, 2023, we arrived at USA to have the MRI of his eyes performed. Gray became nervous while having his vital signs checked and the nurses became concerned with his vital signs. An EKG was then ordered to insure his heart was okay for sedation for the MRI. The results of the EKG were abnormal and an ECHO was ordered. The ECHO revealed a severely enlarged heart and Gray was then diagnosed with severe hypertrophic cardiomyopathy. The pediatric cardiologist explained that we would need to follow up with a pediatric cardiologist that specializes in this condition at Children’s Hospital of Alabama. Gray was then placed on a heart monitor for 14 days, they collected samples for genetic testing and we went home to wait for his appointment in Birmingham.
Gray continued to be his normal, active self and showed no symptoms of his diagnosis until about a week later. Gray came down with a stomach bug. He seemed to handle it well and was back at Daycare a few days later. A couple of days after returning to daycare I received a call from the daycare director stating that Gray had fallen twice during the day. She was concerned as this was not normal for him. As a precaution, my husband and I took Gray to our local hospital emergency room where they did a full workup and decided that he needed to be transferred to USA for further monitoring. On July 7, 2023, after receiving the data from his heart monitor, it was then determined that something had happened to his heart in daycare causing him to fall. This prompted the doctors at USA to immediately transfer Gray by helicopter to Children’s of Alabama.
Upon arrival, Gray was placed in the ICU for further monitoring. During this time, it was determined that a pacemaker and defibrillator were needed. The surgery was performed on July 13, 2023. After surgery, the surgeon told us that the surgery went well but that Gray’s condition was worse than they originally thought.
Soon after being transferred back to the ICU after surgery, Gray experienced a concerning episode of tachycardia. The following day, it was discovered that the defibrillator coil had shifted from its original location and on July 15, 2023, Gray was taken back into surgery to reposition and secure the coil. On July 16, 2023, the day following the second surgery, Gray had a seizure. Multiple CT scans of his brain and an EEG were performed and thankfully, no abnormalities of his brain were found. After a few days he finally began to slowly recover. The doctors, however, were not very optimistic that he would be able to safely go home without a heart transplant.
On August 1, 2023, Gray was officially placed on the heart transplant list. He has now been transferred out of the ICU and into the Critical Care unit for continuous monitoring of his heart while he waits for his new heart.
We were informed that it would be a long wait for a heart of Gray’s size. In the meantime, my husband and I have been staying in the hospital with Gray. I am also pregnant with our second child so we have recently been able to find an apartment close to the hospital since I will be giving birth in October. We have both been doing our best to work as we are able as well as continue to care for and be with Gray in the hospital. It has been a whirlwind of events and we are still trying to adjust to these new aspects of our family’s life. All prayers are greatly appreciated.
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.