Heart Month with Caleb
In recognition of American Heart Month, members from the Speak Now for Kids community will share their personal experience of raising a child with a congenital heart defect (CHD). Today, we will hear from Caleb’s mom and Southwest Regional Director of Mended Little Hearts, Candida, on how she’s raising awareness for Caleb and kids like him.
I was finally pregnant again after two back-to-back miscarriages. This time, it seemed as if it would be a successful pregnancy. As my husband and I were getting excited to find out the sex of the baby at the 18-week ultrasound, the doctor informed us “there might be something wrong.”
Shock, disbelief, fear, confusion, sadness — every emotion you could feel was happening at that very moment. “Oh, by the way, you’re having a boy,” our doctor told us. Every bit of our excitement was gone. Along with that, they wanted us to know our three options: terminate the pregnancy, compassionate care, or carry my child to full-term and hope that a surgeon would operate on him. We found out that my son has hypoplastic right heart syndrome (HRHS). A surgeon informed us that we might have a chance with surgery, but it might be better to wait until he was born.
Caleb had three open heart surgeries at Methodist Children’s Hospital in San Antonio. His first surgery was when he was 3 weeks old and his second open heart surgery occurred at 5 months old. We made it until one month before his 6th birthday before we made the final decision to move forward with the last stage of surgery, the Fontan procedure. Caleb still had issues with arrhythmias and the team hoped to prevent them without medication. They attempted an ablation before surgery but were unsuccessful. They then used the maze procedure during surgery which seemed to do the trick for a few years. Unfortunately, the arrhythmias came back and are being controlled with medication.
His most recent emergency with arrhythmias was taken care of at Texas Children’s Hospital in Houston since we relocated. We continue to travel back to San Antonio twice a year to follow up with his cardiology team and electrophysiologist. We also have an annual halter monitor and a stress test every couple of years.
Originally, Caleb was on my insurance through work. When I was on family leave, I relied on COBRA for him to remain covered. When I made the decision to leave my job to care for Caleb, we were able to transfer him to my husband’s insurance. We have always paid for a high-premium insurance plan through my husband’s employer to ensure that we could get the best coverage plans and take Caleb anywhere he needed to go for care. Our premiums have outgrown our mortgage payments. Insurance premiums are our largest monthly expense. We meet our deductible every year on top of that. He only qualified for SSI and Medicaid for a couple months of his life. Everything else has come out of our pockets. We have made a million payment plans with the hospitals and doctors’ offices over the years. We even sold our vehicles and work to share one car between work and hospital appointments. We sold our forever house and downsized to try and stay afloat.
My husband and I are part of Mended Hearts and Mended Little Hearts to advocate for lifelong and affordable care. We have made trips to Washington D.C. to lobby for children’s health care. We join campaigns and send emails to our legislators. I follow their social media pages and receive their emails to keep up with what they are doing. We also share Caleb’s health journey and the importance of investing in children’s health through our own social media and talk to anyone who will listen.
Caleb is now a well-rounded 13-year-old. He remained physically active as a swimmer and has been on a swim team for about four years now. He loves theater and is currently taking theater class in school and participating in their upcoming one-act play for the University Interscholastic League. He plays the piano and trumpet in band. Obviously, we try to protect Caleb and keep him safe. However, we also try to let him live thrive as normally as possible. We do talk to the school staff each year to let them know about Caleb and his condition. We keep emergency medication and monitoring devices at the nurse’s office in case of arrhythmias. We carry his devices and medications with us as often as possible.
Caleb has known about his heart defect since day one. We have always been open and honest with our son. At the age of 6, when we were preparing for his last surgery, we made sure the surgeons spoke to him about the procedures and encouraged him to ask his own questions since he was the patient. He now fills his weekly medicine holder and is aware of the medications he is taking and why he’s taking them. He is responsible for telling me when medications need to be refilled — and of course, I have to keep a close eye on him just in case. At our most recent appointment, he filled out his own paperwork. Caleb will turn 18 in five years and these years will go by fast. He needs to know his medical information and be able to get the care he needs when he transitions into adulthood. I want him to be ready.