February 13th was Adult CHD Awareness Day and this year we were honored to feature Lauren.
Lauren is 38 years old and lives with Congenital Heart Disease (CHD). She was born with Tricuspid Atresia, Hypoplastic Right Ventricle, a large VSD, and multiple muscular ASDs.
Throughout her life, Lauren has undergone three open-heart surgeries: PA banding at 5 months old, the Glenn and Fontan procedures at 2 years old, and a Fontan revision at 34 years old. Her Fontan revision included a maze procedure, right atrial reduction, artery repair, and pacemaker implantation. In addition, Lauren has undergone multiple heart catheterizations, a balloon atrial septostomy, two cardiac ablations, hundreds of medical tests, countless pokes, and so much more.
Growing up, Lauren enjoyed many of the same activities as other children, including theater, Girl Scouts, and playing the piano. Today, she is happily married to her husband, Chris, and enjoys bowling, reading, writing, and many other hobbies in her free time.
We asked Lauren to share what life is like living with CHD and what advice she would give to heart parents:
“Living with a Single Ventricle Fontan heart definitely isn’t always easy, but I continue to live as full of a life as I can despite whatever challenges I get thrown. Life might not always go as you hoped or planned especially with a single ventricle Fontan heart, but life can still be wonderful and beautiful even during hard times. I have so much to be grateful for. I take one day at a time and enjoy the simple things in life.
I know having a child with CHD can be scary, overwhelming, and just hard sometimes. I feel finding a good balance in raising your CHDer is important. A balance meaning being as knowledgeable and proactive as you can as well teaching them in an age appropriate way about their heart condition as they age is important to, yet treating them as normal as possible and letting them live as full of a life as possible despite any challenges they face. Having a lifelong chronic illness is not always easy, and it will always be a part of our lives, but it shouldn’t rule our lives or prevent us from enjoying life. Let us do as many things as we want and are able to do.
My parents, especially my mom, educating me about my heart honestly, openly, and in age appropriate ways really helped in me becoming the advocate I am now not just for myself, but a huge CHD advocate in general especially gaining as much Fontan knowledge as I can for the Fontan population since l am a Fontan patient. I have always liked being treated as “normal” as I could despite my personal limitations as a kid and even now as an adult. My parents did a great job treating me as “normal” as possible which I always appreciated. I love when people get to know me for me and not just because I have half a heart. Lastly, mental health issues are such a big thing in the CHD community, so addressing everyone’s mental health is super important, just as important as our physical health. So do not ever be afraid to reach out for mental health help and support of any kind for you or your CHDer. There are so many wonderful resources out there now. You are strong, amazing, loved, and not alone.”
Thank you, Lauren, for being such a strong advocate within the CHD community and for sharing your story so openly and vulnerably. We appreciate you so much!
