As the mom of a congenital heart disease survivor, I am submersed into a life I never imagined existed. I found out at 20 weeks that my daughter, Gretta, had a heart defect. “Valerie, your little girl has something wrong with her heart. We think she has tricuspid atresia and we can tell parts are missing so we are going to make you an appointment with a pediatric cardiologist.” Those words are burned in my brain, they haunt me because I had never heard of a heart defect. I mean heart problems are for people that are old, don't take care of themselves or eat unhealthily. The next weeks were full of ultrasounds and doctor appointments. I learned a lot of medical jargon very quickly. I also learned the specific diagnosis that our daughter had didn’t have very good statistics to go with it. Tricuspid Atresia, Transposition of the Great Vessels, ASD and hypoplastic right ventricle became very familiar rapidly.
thumbnail_alt_text===Congenital Heart Disease is a chronic condition and she will need lifelong care. The Affordable Care Act ensures that Gretta can never be turned down for her pre-existing condition.
What is a parent to do?
The last part of my pregnancy was spent in the hospital assuring that my sweet baby would grow as big and healthy as she could until time to deliver. Once she was born I did everything I could to help ensure my sweet little girl would stay as healthy as possible. I kept her home when we weren’t in the hospital. I bought hand sanitizer in bulk and made sure that anyone that had a sniffle didn’t come anywhere near her. While I stayed in the hospital with our little girl my husband worked tirelessly. He came every night to see us at the hospital and to bring me dinner, and he would go back home to work another day. At the hospital, the nurses, doctors, and support staff were always amazing, but it was a lonely place.
That is when I decided that there had to be something better.
I began to work with a peer to peer group called the Tinman Club where parents got together and shared their fears, learned how to advocate for their children, and raised awareness. I created a visiting program at the hospital that allowed me to go in and see families and let them know they weren’t alone. This is where I got a first rate education as to all the different needs families faced. I also joined forces with the American Heart Association and started working on the North Carolina Pulse Oximetry Bill.
Joining forces with the American Heart Association to work on the Pulse Ox bill would consume many hours of my time over the next 2 years. I realized a passion for legislative advocacy that I never knew I had. During all my time working on the Pulse Ox Bill, I got other families involved and made sure that our voices would be heard at the 2013 North Carolina State Lobby Day. We invited the Chief of Pediatric Cardiology from Brenner Children’s Hospital to attend to help lend a voice to the cause. Being in Raleigh that day with all those families and seeing my 5 year old daughter voice her love of her heart family empowered me to do even more. I joined the North Carolina AHA Advocacy committee and made every cause that the American Heart Association advocates for something I could lend my voice and personal experience to, in my daughter’s name.
Congenital Heart Disease is a lifelong chronic condition and will need lifelong care. The Affordable Care Act ensures that Gretta can never be turned down for her pre-existing condition. This is an important piece of the ACA as when Gretta gets older she will not be able to see a regular cardiologist. She will need an Adult Congenital Cardiologist to see to her cardiac needs.
Over the years, I have become very passionate about advocating and have gotten Gretta involved. She has attended the AHA North Carolina State Lobby Day numerous times, as well as the AHA’s Federal Lobby Day in Washington, DC. She has been featured in Heart Balls, Go Red Fashion Shows, and is this year’s Winston-Salem Heart and Stroke Walk Princess. Gretta will tell you how she loves the American Heart Association “because they raise money to give to doctors to help make kids like me better!”
As I look at the year ahead there are policies both locally and federally that impact our lives and so many like us. There is always a concern for Gretta's quality of life and I look forward to giving my time to an organization that benefits not only my sweet little miracle but so many like her.