Stories from the Heart: Heart Warrior Siblings

Meet two incredible Heart Warrior siblings, Millie and Audie, who were both born with tetralogy of Fallot (TOF). They, along with their family, participate in the Cleveland Congenital Heart Walk. 

Their family shares: "Our reason for walking is quite simple — it’s for our children. In November 2019 we were living in our hometown of Buffalo, NY and were expecting our second child. We learned at our 19 week ultrasound that she had a congenital heart defect, tetralogy of Fallot. Buffalo did not have pediatric cardiac surgeon, so we traveled to Boston, MA for her birth and then again for her open heart surgery at 7 months old. We were incredibly fortunate in that she had a beautiful repair without complications and aside from some struggles with respiratory illnesses that have landed us in the hospital, it really has been a best case scenario in many ways. She is now 5 years old and thriving! She is just starting kindergarten and is so excited. 

Unfortunately, our connection to CHD doesn’t end with our daughter. After much consideration, we decided to expand our family and learned this past November that we were pregnant with our third child. Despite extensive negative genetic testing on our daughter previously, we were scheduled for a fetal echo at 16 weeks due to the family history, where we unfortunately learned that our son would also have tetralogy of Fallot, the exact same diagnosis as our daughter. He was born at the end of July and is doing very well, although it appears that he will require more interventions/surgeries than our daughter did. For right now we are just treasuring each day with him and hoping for the best possible outcome come surgery time. 

Through all of this, our family has adopted a bit of a mantra and that is “Be kind, head up, heart strong”. What is so incredible about so many of these kids is that you would never know anything is wrong with them to look at them, and like so many other people, they are fighting invisible battles. For that reason we say be kind and strive to lift people up. We also know how easy it is to focus on the negatives and the worries that come along with these diagnoses, and so we make a strong effort to find joy in the little things, show gratitude each day, and to keep our heads up. And lastly, these kids have such battles to fight, as do their families, and even with open heart surgery, there is no cure for #CHD. So, for these lifelong battles we say keep your heart strong. 

We fundraise and walk to spread awareness about CHD not only for our kids with tetralogy of Fallot, but also for our heart healthy son who has also been profoundly impacted by these CHD journeys, for our many friends in the heart community, and for those who we have lost far too soon to CHD."

Watch an interview with their mom, Erica Webb, on New Day Cleveland here.