This will be my 6th year riding for the American Heart Association. I'm riding again in honor of Marylise, she is doing Great but is scheduled for another procedure in August 2021. Continued prayers are appreciated that she remains Covidfree, healthy and doing well!! See her story and updated information below from her mom. I managed a 2nd place finish in raising donations last year, hoping to do better this year!! Thank you in advance for your support!!
This is the story of Marylise ...
When I found out I was pregnant for the third time, I was very excited and nervous at the same time. My oldest was about to turn two when we found out we would be having another girl. I remember thinking about the two of them being so close in age and becoming the best of friends one day (all the while panicking of the thought of having a toddler and newborn at the same time). Overall I had a great pregnancy. Every doctor visits went well. Every ultrasound looked great. I was content. Content in knowing that our baby was "well" after suffering a loss with my first pregnancy.
The day finally came to give birth- April 19, 2012. The day I'll never forget for many reasons. Here came another beautiful baby girl into the world. She was quite different than her big sister in that she had a head full of jet black wavy hair. What a surprise! I immediately fell in love. We named her Marylise Nora. She was perfect and all was well until the nurse came in to listen to her heart again. Again? She saw the concern in my face and reassured me by saying everything should be fine. It's very common for babies to have heart murmurs after birth and most of the time they go away. They were going to keep a check on her. I felt sick to my stomach. I've never heard of a heart murmur before. They never said anything about that with my first born. I tried to remain positive and hide my fear of the unknown. After all we had visitor after visitor and this was suppose to be a happy day.
Later on that day, the pediatrician on call came to see her and again listened to her heart. She then told me she was going to call in a pediatric cardiologist to do some tests "just in case." Marylise's heart murmur had not gone away like they anticipated. I then could not hide my worry from our families. My husband and I had to break the sad news but reassured everyone that she would be fine. A couple hours later, they came to get Marylise for testing. I wanted to go but since I just had a c-section, they told me I needed to stay in my room but assured me that she would be safe and back in no time.
While she away for testing, I had a few more visitors. Luckily one of them was our preacher. I told him what was going on and he prayed. I tried to feel at peace but I just couldn't. I felt very uneasy. Marylise was not back yet and it had been over an hour. I told my husband to take me to her. When we found her, the cardiologist was still doing an ultrasound of Marylise's heart. He seemed very confused. The nurses stood around him worried faces. My husband and I were then told that Marylise appeared to have a rare heart defect called Tetralogy of Fallot with pulmonary atresia. The cardiologist then proceeded to show us a diagram of a "normal" heart function and then showed us what Marylise's heart function looked like. He explained that she was born without pulmonary arteries but that her body made up its own vessels in place of those arteries in order for her to live. WOW. All of this was a lot to take in. We immediately had to leave for Charleston to take her to MUSC for more testing. There they told us even more information about our long journey with multiple surgeries. The doctors decided to wait until she could get as big as she could before attempting open heart surgery to splice those vessels that her body made and make pulmonary arteries out of them. They also said she would need a valve. This was going to be a very lengthy surgery and even then they weren't sure if would work.
Marylise had her first open heart surgery at 11 months old. Her surgery lasted nearly 12 hours long. During our long stay at MUSC, we received care packages from the American Heart Association. In addition to that, we learned how much the American Heart Association donates to places like MUSC to improve technology for such cases as Marylise. My family and I are forever grateful that Marylise has the best heart care because of generous donations. Marylise is now eight years old. She still continues to go to MUSC (because of the best heart technology) every six months for heart catheterizations. Her next procedure is August 18, 2021. She has had two stints so far and will continue catheterizations until her arteries grow on their own. She will also be facing another open heart surgery when she turns about ten years old to replace the valve and tube attached to her heart. Thank you for making all these surgeries possible by donating to improve technology especially during this Covid 19 crisis!!!