From a Mother’s Perspective: Raising a Child With Tetralogy of Fallot
Tina and her son, Joey
Joey
At Hearts Like Mine, we believe that every journey through congenital heart disease is shaped not only by the patient, but also by the family walking beside them. Today, we’re honored to share a powerful story from a mother who knows this journey intimately. In her own words, she reflects on the moments that tested her resilience, the milestones that brought joy, and the lessons she’s learned as both a mother and advocate. We hope her story provides comfort, strength, and a sense of community to other families facing similar challenges
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Our story began over two decades ago, at my 20-week prenatal appointment. A routine Alpha Fetal Protein test came back abnormal, and we were sent for an extensive ultrasound. It was during that ultrasound that we first heard the words Tetralogy of Fallot, a congenital heart defect made up of four related heart abnormalities. As expectant parents, we were overwhelmed, uncertain, and scared.
Despite the diagnosis, my son was born at full term, with a perfect 10 Apgar score. He didn't need any interventions at birth, and after being closely monitored by the NICU team, we were able to bring him home just three days later. That was a blessing I'll never forget.
I remember one thing the cardiologist said before we left the hospital that has stuck with me for 26 years: "Make sure he gets his teeth cleaned every six months. Oral health protects the heart from infection." To this day, we have followed that advice religiously.
His medical team told us he could have a complete surgical repair once he reached a certain weight, which he did at 7 months old. We scheduled the open-heart surgery and prayed for the best. The surgery itself went well, but tragically, he suffered a stroke during surgery. We were blindsided. Stroke wasn't even a complication we had prepared for. Just like that, we weren't just managing a serious heart condition, we were also navigating the long road of neurological recovery.
The stroke resulted in periodic seizures throughout his life, adding another layer to his medical journey. But through it all, we kept moving forward.
At age 12, he underwent his second open-heart surgery to replace his pulmonary valve, and thankfully, everything went smoothly. Since then, we have been followed closely by the wonderful pediatric and adult congenital heart teams at CHOC, every 3 to 6 months. The care and attention we have received over the years have been exceptional, and we feel incredibly fortunate.
We have also watched the understanding and treatment of Tetralogy of Fallot evolve. Where decades ago, there were so many unknowns, there is now confidence. Our doctors have always reassured us that with the right care, people with this condition can live long, full, and active lives. That's exactly what we've seen. In many ways, we often forget he even has a heart condition because he lives such a normal, active life.
We were told he will need a pulmonary valve replacement approximately every ten years. It has been 14 years since the last one, and now it's time. The difference now is incredible. Instead of full open-heart surgery, he will be having a transcatheter pulmonary valve replacement, which is a much less invasive procedure.
Next month, we'll be heading to UC San Diego, where the procedure will be performed by Dr. Laith Alshawabkeh, the director of the Adult Congenital Heart Disease Program. We are hopeful that everything will go smoothly and that he will only need to stay in the hospital for one night.
This journey has had its share of challenges, moments of fear, heartbreak, and uncertainty. But it's also been filled with resilience, hope, and gratitude. We've seen just how far medicine has come, and we've learned to never take a single day for granted.
To other parents just starting this journey: there is hope. Stay informed, ask questions, trust your instincts, and hold on to the belief that your child can and will thrive.
Warm regards,
Tina
