The Boston Marathon has always been a race that I’ve held up on a pedestal. Although I’ve run some half marathons and enjoy a challenge, the idea of qualifying for it seemed unattainable. The other option of going through a charitable organization seemed like a good alternative, but there was never one that I necessarily felt drawn to and it was not something I wanted to force. And then came our daughter Frannie.
After having two healthy boys, to say we were elated to find out we were having a baby girl would be an understatement. In contrast to that happiness was the news that came with it. The doctor performing the ultrasound noticed an issue with her heart. We were referred to Boston Children’s Hospital, and two days later, after a two hour long fetal echocardiogram, we were sitting in a conference room finding out that our daughter did in fact have a congenital heart defect, and that it was a very serious one known as Hypoplastic Left Heart Syndrome (essentially, she would be born with half of a heart). It was a surreal experience. We felt like our life was being played out in a movie. We’ve seen images of families hearing tough news about their loved ones in those conference rooms before, but you never think that it will be your family.
Subsequent appointments continued to reveal more issues with our daughter’s heart and lungs. We started to call the conference room the “cry room”. We were slowly learning that our daughter’s condition was dire and her chances for survival were extremely low. Our daughter was born on April 27th, 2016 and she lived for 122 minutes. She lived long enough to be rushed over the footbridge from Brigham and Women’s Hospital to Boston Children’s. She lived long enough for the brilliant doctors over at Children’s to perform a catheterization procedure. And she lived long enough for those same doctors to see that her heart and lungs were not strong enough to survive future surgical procedures. She was brought back to the Brigham to spend her final moments with us, and we will forever be grateful for that precious time and to the amazing team of doctors and nurses who made it possible.
I’m not that familiar with the exact makeup of Boston Children’s Hospital as we did not spend that much time there. And I am not familiar with how many conference rooms exist in their buildings. But what I do know is that the level of care we received in that specific conference room and at the Advanced Fetal Care Center goes beyond any sort of medical care we have received before. Every ultrasound tech, MRI specialist, radiologist, nurse practitioner, social worker, cardiologist, fellow and surgeon we came in contact with will forever leave me in awe of the perfect combination of brilliance, professionalism and compassion that each of those individuals possess. They treated our family and daughter with such a high level of respect and care, it brings tears to my eyes just thinking about it. I am confident that those qualities exist in the remaining conference rooms and departments at the hospital. Boston Children’s Hospital left us with no regrets because we know we did everything possible for our daughter by bringing her to THE best place possible.
Running the marathon for Boston Children’s Hospital on April 17th, almost 1 year from the day Frannie came into the world, feels like the perfect way to honor her brief yet impactful life.
Your donation will mean so much to our family and to our extended family at Boston Children's Hospital.