Before our daughter, Abigail Grace, was born, we had never heard of a CHD, a Congenital Heart Defect. We didn’t know what it meant or just how prevalent (1/100 children) CHDs are. Everything through pregnancy and her birth had been smooth. We were filled with joy to finally meet our precious only child. That same day, a nurse told us that she had “a heart murmur that sounds like a freight train.” Little did we know, this would be the beginning of Abigail’s courageous, lifelong heart journey. At four days old, she had her first echocardiogram. But, it wasn’t until tiny Abby was eight days old, did we or the doctors know the severity of her heart condition. We were sent to Children’s Hospital Boston urgently. At age eight, Abby is our Heart Hero. She lives her life with inner strength and determination. She proclaims that her aorta is too large because “there is too much love in her heart.” Every single day, her CHD is a part of her, is a part of us—the anxiety, wonder, hope, fear, faith. What has been a true blessing to Abby and to us is the community of support that surrounds us. Abby is not alone on her journey and we are not alone with our trepidations as her parents.
We had the honor to visit the State House and meet with Governor Lincoln Chafee to advocate for pulse ox screening at birth. It was a wonderful experience to be among heart survivors and to advocate for a simple, inexpensive screening that could help so many children. We are infinitely thankful that our daughter remained stable those first eight days prior to her diagnosis, but many children born with CHDs, undiagnosed at birth, are not so lucky. Abby’s journey is uncertain but is full of hope. It is powerful, for her and for us, to come together to help children born with CHDs and their parents through awareness, community, support, and advocacy. We are thankful to the American Heart Association and to Mended Little Hearts of RI for this tremendous opportunity to do just this through our visit to the State House and meeting with Governor Chafee.
Elizabeth Byerlee and Bryan Byerlee