February 10, 2014 is a day that I can never forget. I was 21 weeks pregnant and went in for a mid-term check-up. Everything had been fine to date, and I had no reason to believe that this appointment would be any different. We were looking forward to finding out if we needed to start buying pink frilly frocks or tiny blue bowties. Disappointment cannot even begin to describe the unexpected news that came along with finding out the gender. My little girl had only half of a heart - her right ventricle was not developed.
Initially, my doctor did not recommend continuing with the pregnancy. From then on, every tiny kick and flutter brought a painful reminder that my baby may not be able to survive life outside her cozy home in my belly. I went from floating in the clouds with excitement to a very dark place in a matter of minutes.
The next several weeks were a blur - filled with prayers, tears, research, phone calls and doctors appointments. With each appointment, our new support team at Boston Children's Hospital brought us hope and truth. Once we had gathered all the information that we could, we decided that we were going to continue on our journey. My new mission became clear: to remain positive and do everything within my power to bring a healthy little girl into the world and to give her all the love that I am capable of giving once she arrived.
Elliot Grace came out kicking and screaming on June 24, 2014 at 10:02 AM -- the single happiest and scariest moment of my entire life. I was fortunate enough to cuddle with her for five beautiful minutes before she was whisked away to Boston Children's where she was admitted to cardiac ICU. Someone had literally taken away a precious piece of me, and there was nothing I could do about it. I was very jealous hearing babies crying in the other rooms around me while I had to be delivered in a wheelchair to visit mine in a different hospital. This is not how motherhood should begin for anyone -- and certainly not how a new human should be welcomed into the world!
We had three precious days with her before her first open heart surgery. Even though we didn't know her well, we knew that she was a fighter. She recovered in record time and was home in 13 days. When I say "record", I'm not just being a proud mommy. The average hospital stay for a Stage 1 Norwood operation is 6-8 weeks. Elliot Grace was a superstar! As planned, she had her second open heart surgery (Stage 2 Glen) on December 11, 2014 -- and amazed us again with a six day recovery before returning home just before Christmas. She had her final scheduled surgery -- the Fontan -- on April 7, 2017 that brought her oxygen saturation (O2) to the high 90s (from low 80s) and meant no more blue fingers and toes! In true Elliot fashion, she was back at home in ten days! Although we feel incredibly blessed that she has fared so well during her planned surgeries, her fight is not over!
Elliot maintains her heart health with twice daily medications, but we struggle not knowing what happens next. The future for single ventricle heart warriors varies widely and there is not a lot of data to help us predict how she may fare into adulthood. Future intervention is inevitable and we know that it's not a matter of "if", but rather "when" and "what". This is what keeps me awake at night. At the extreme end of the spectrum, a heart and liver transplant would be needed if she develops FALD (Fontan Associated Liver Disease). Most people assume that she is "normal" now, but a CHD can never be cured.
As a parent, I feel helpless because I can't fix her heart. The most powerful thing I CAN do is fight the good fight against CHDs - not only for Elliot's future, but for all of those who have come before and who will come after her. They each deserve a fighting chance that is not possible without continued advancements in research. They deserve to live long and healthy lives. They deserve to not only have a childhood, but also an adulthood with families and dreams of their own.
Elliot is, by far, the most amazing human that I have ever known and despite all that she has been
through, she continues to defy the odds. She is shaping into a gorgeous little lady with a lot of sweet and a little bit of sass. She is also a fierce advocate for herself and for CHD awareness - raising funds through her summer lemonade stand, heart walk/run team and helping those in need with her annual birthday blood drive.
Having a child with a CHD is a constant journey filled with ups and downs. As long as I am able, I will continue advocating for Elliot and for advancements in CHD research. It has saved her life to date and her future will depend on it. We thank you for joining us on this journey! TOGETHER, we can do our part to fund research and raise awareness about CHDs for Elliot and so many others. We can give them a present and a future.
With love and unending gratitude,
Melissa, Elliot & Dashiell
