Living with Hypoplastic Left Heart Syndrome, Ta’Ziyah
Ta’Ziyah’s Story – Written By His Nana, Dorianne
Ta’Ziyah was born with hypoplastic left heart syndrome (HLHS). His nana, Dorianne, shares her perspective on what it felt like to learn her grandson’s diagnosis, the challenges he has faced growing up, and the need for more research.
Before my grandson, Ta’Ziyah, was born, I had a vision one night that looked and felt so real. I envisioned a baby on an examining table with three doctors on each side of the table; they were speaking, but I could not understand them. I woke up in a panic about my daughter’s pregnancy. During my daughter’s first trimester, we learned that Ta’Ziyah had hypoplastic left heart syndrome (HLHS).
My daughter had multiple visits with a doctor before she received a diagnosis. The doctor performed an echocardiogram, a test that uses sound waves to evaluate the baby’s heart for problems before birth. When we first received the diagnosis, the doctor escorted us to a room with many diagrams of different hearts and explained HLHS. The left side of Ta’Ziyah’s heart and aorta were severely underdeveloped. There is no cure for HLHS and he would need multiple heart surgeries during his life and specialty medical care across his lifespan.
On the night he was born, Ta’Ziyah was transported to a specialty hospital for his first open-heart surgery, with two more surgeries shortly after. After being discharged a few weeks after his last surgery, he was admitted to the hospital again due to respiratory distress as well as an infection in the lungs. Several months later, Ta’Ziyah had his second open-heart surgery.
Ta’Ziyah is currently doing very well. The number of heart medications he is on has been reduced from three medications to two. He is our miracle heart hero; we are so blessed to have him in our lives. He has taught our family to always have hope and not allow a diagnosis to dictate our future and define who we are today. Ta’Ziyah loves to play video games, and he’s always amazed when he sees pictures of himself during his first few months of life. He has a passion for dogs, and he loves his pet mouse. He is very intelligent and asks many questions about the scar on his chest from his surgeries. His mom and I are so happy that Ta’Ziyah continues to bring joy to our lives as well as touch others with his joyful soul.
Birth defects research is extremely important for those living with birth defects and their loved ones. Babies who survive and live with birth defects are at an increased risk for developing many lifelong physical, mental, and social challenges. In addition to a heart defect, my grandson also has Attention-Deficit/Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD). I would like to see more research done on the health of children living with heart defects.
My advice for other families living with heart defects is to educate yourself on the diagnosis you receive and have a support system in place because this journey is not easy. Before Ta’Ziyah was born, I had never heard of HLHS and never imagined having a grandson endure so many surgeries before the age of 2. Having positive and supportive people around will help families stay strong as they watch their baby go through a series of open-heart surgeries during the first few years of life. You will have some good days and some bad days, but you will get through this.