I walk for my beautiful daughter Ava. My husband Dave and I welcomed our 9 month old daughter Ava into the world on December 21, 2019. She is our everything and has brought more love and joy to our lives than we ever knew possible!
The day she was born we learned she had a heart murmur. The pediatrician told us this tends to be normal in newborns and advised us to do our best to remain calm while we waited for what was the first of many cardiology appointments. On December 27, 2019 our lives were forever changed. Our sweet, innocent baby girl was diagnosed with Tetralogy of Fallot, a rare heart condition that would require open heart surgery within the first 6 months of life. In that moment we felt like the world came crashing down on us. It didn’t seem real and to be truthfully honest after he said the words “open heart surgery” I didn’t hear anything else he said the remainder of the appointment as I sat there in shock.
While heart disease is prevalent in my family, this just felt different. She is just a baby and I couldn’t even imagine having to send my little girl into such a major surgery. The next several months consisted of many appointments to monitor the progression of her condition as they expect it to gradually get worse over time. To the surprise of many, we were fortunate that Ava continued to grow well despite being a heart baby and maintained good oxygen levels. When we got to our March appointment Ava’s cardiologist decided based on how things were looking to begin planning for a June surgery. Although we knew surgery was going to be the outcome, having a time set felt like learning the news all over again. The next few months were a whirlwind of emotions. The amount of stress and fear we felt was indescribable. Many times, we questioned if this really needed to be done as we wanted to be sure there was no other way. I can remember sitting at her pre-op appointment asking the surgeon one last time if surgery was the only way to which he respectfully answered that there is a point of no return with Tetralogy of Fallot if it goes un-repaired and again humbly reminded us that we were doing the right thing for Ava. While signing those consent papers were incredibly difficult we knew it was for the best.
On June 29, 2019, Ava went in for surgery. They took her back at 6:30AM on the dot and we didn’t get to see her again until about 2:30PM. It was the longest 8 hours of our lives. We sat there anxiously, clinging to this pager they gave us to provide updates every 1-2 hours. Ava’s surgeon came out around 12:50 to speak to us and shared that surgery went as expected, very well. We felt so relieved in that moment and I can tell you if there was ever a time I felt the prayers of those praying for us it was then. Oddly enough I felt a sense of peace so yes the power of prayer is so real!
Aside from surgery itself, a fear we had as parents was seeing our baby in that kind of condition after surgery; yes the tubes, the wound, knowing she was uncomfortable and likely in pain despite being medicated. But I’ll tell you this, while seeing our baby, and many others for that matter in the PICU in that condition is gut wrenching, as a parent this switch goes off and you just stop worrying about all the stuff and just want to comfort and care for your baby. While we had a few minor hiccups while being at the hospital overall Ava did great and we were discharged 6 days after surgery. That day was again full of emotion. As soon as we stepped foot outside the hospital my eyes immediately filled with tears. The past week was so surreal. We couldn’t wait to get our baby girl home!
Since surgery, I’m happy to report thanks to God and the wonderful team of doctors at MUSC, Ava is doing well and thriving! She has shown tremendous strength and resilience! She is a true heart warrior, and we couldn’t be more proud of our beautiful, fun, loving baby girl! While there is still a lot of unknown for the future with Ava’s heart condition, I’ve learned how important it is to focus on how far she has come and where we are today. She will continue to be closely monitored throughout her life with the echocardiograms but God willing, the surgery she had will be the one and only she ever needs. Please continue to keep our sweet Ava and the families of all heart survivors, big and small in your prayers. If you’ve made it this far I thank you for reading our family’s story.