Happy Heart Month!
My next story comes from Holly, an adult living with Hypoplastic Left Heart Syndrome. She has not only survived, but thrived, and is running her own company!
On February 17, 1978, I was born at Memorial City General Hospital in Houston, TX. At hours old, I was diagnosed with HLHS and other cardiac abnormalities. I was transferred to Texas Children’s Hospital to have the Waterston Shunt surgery which saved my life! My parents did not have any previous indication before I was born that I had this type of diagnosis so I can only imagine how traumatic the birth of their first born truly was for them. I have been on medication my entire life and had the Fontan procedure at Children’s Hospital of Philadelphia when I was 9 years old. A year later, I had another open heart surgery to correct a leakage. During this time I missed half of third grade and part of fourth.
Hospital life was interesting to say the least. I was blessed to have some of the best medical professionals care for me and the Child Life Department at CHOP did an outstanding job keeping me entertained with all kinds of crafts and games. I did miss my friends, my two younger sisters and my mom’s cooking but my friends were able to visit later in my recovery and the hospital food court had a McDonald's so I was spoiled with Happy Meals and the toys they came with. My Mom (and I have no idea how she did it with 2 young kids at home) stayed with me every night I was in the hospital. The only thing that could have made my hospital stays that much better was if I wouldn’t have had to wear the dreaded hospital gown. I hated that gown! It was bulky, cold, revealing and worst of all it made me feel even more like “the sick kid.”
Since my surgeries, I’ve lived a relatively “normal” life. Over the years, my cardiology appointments fluctuated from annually to currently every six months. I was not allowed to play sports and one of my doctors even told my parents when I was 12 that I “would be lucky to live to 40.” Even with that professional opinion, my parents did not treat me any different from my siblings. Of course, I rested when I needed to and took medicine daily but I went to a public school, had chores, sleepovers with friends, and was taught that just because I may have to do some things differently, didn’t mean I couldn’t do them at all. I went to Michigan State University, spent a summer in London and Edinburgh studying abroad, and had a very successful sales career working for Healthcare and Technology companies. Four years ago, I quit my job to pursue my passion of making hospital stays more comfortable and empowering. I launched Heroic Hearts, LLC (https://heroicheartsllc.com/)
which sells children’s hospital apparel. I want kids to have a better experience than what I had so I created Little Heroes® which are patented and functional garments that offer plastic snaps at seams to allow multiple outputs, and accessibility for monitor lines, IVs, casts, and all the other things that can make a hospital stay uncomfortable. They are fun, creative and put a smile on a child’s face at a time they need it most.
I am grateful to the Adult Congenital Heart Disease Program at Texas Children’s Hospital, especially to Dr. Wayne Franklin, Dr. Wilson Lam and Allison Callendar, PA-C who monitor my diagnosis and the 8 medications I take daily. Not knowing until 2 years ago that a program like this existed, I can truly say there is a difference in care and all CHDers should transition to one as an adult. I’m looking forward to celebrating my 40th birthday this year and will toast to another 40 years!
Heroic Hearts, LLC