At 20 weeks pregnant we not only found out we were finally having a boy after 2 girls, but also that his heart had not fully developed. October 25th, 2012, we welcomed our first son, Kaiden, into this world knowing that he would have a long journey and we were willing to fight for every breath for him. Kaiden was diagnosed with Hypoplastic Left Ventricle, DORV, Tricuspid Valve Regurgitation, Dextrocardia with Heterotaxy Syndrome.
Kaiden spent his first 6 months in and out of Children’s Medical Center Dallas. In 2 short years, Kaiden had undergone 3 OHS and multiple heart catheterizations. Kaiden was doing well until Oct 2021, when we were sent to Dell Children’s Hospital in Austin, TX, to have yet another surgery, this time for his tricuspid valve to be repaired. Kaiden recovered well and was back home in Fort Worth, TX to enjoy his time with his 3 sisters until the end of 2023.
After a routine checkup with his cardiologist in Dallas, she thought it would be best for us to go back to Austin to be evaluated for a heart transplant and to look at Kaiden’s liver. On Jan 11th, 2024, we had an appointment with the heart team at Dell Children’s and had some labs and echo and we were sent back home to wait for further testing to be scheduled. Little did we know that 24 hours later we would be getting a call that Kaiden’s blood work didn’t look great, and they wanted us to return ASAP. So, on Jan 17th, 2024, Kaiden was admitted to Dell Children’s for a heart catheterization and liver biopsy. On Jan 22nd, we received the shocking news that Kaiden’s liver biopsy came back for Fibrosis Stage 3. We just couldn’t believe it.
His Dr’s said getting him a new heart would be the best option and are very confident a new heart will help the liver recover. After many long days of testing, Kaiden was officially listed for a heart transplant, Status 1A, and will have to remain inpatient until his new heart comes. Mom is staying with him at the hospital, while dad is back home over 3 hours away taking care of our 3 girls.
Unfortunately, these diagnoses will require lifelong treatment, but we are very blessed with a wonderful support system from friends and family. Please continue praying for Kaiden’s Heart!
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.