Next month, Beyah’s Battalion will be participating in Philadelphia Marathon events on behalf of Big Hearts to Little Hearts! As many of you know, our youngest daughter, Beyah, was diagnosed in utero with a series of critical congenital heart defects in January 2015. Because the initial diagnosis and prognosis were both devastating, Matt and I sought a second opinion at Children’s Hospital of Philadelphia (CHOP). From day one, the medical team at CHOP’s Center for Fetal Diagnosis and Treatment (CFDT) expressed much needed hope and confidence in their ability to address the presenting issues as well as any challenges that might present in the future. Beyah and I were followed closely and supported by CHOP’s Fetal Heart Program for the remainder of my pregnancy. CHOP was our second home!
Sweet Beyah Eloise was born in CHOP’s Special Delivery Unit (SDU) on May 25, 2015. Beyah was immediately stabilized, and underwent open heart surgery 3 days later with Dr. Thomas Spray, chief of the Division of Cardiothorasic Surgery at CHOP. By all immediate accounts, Beyah’s surgery was a success, and her quick recovery was noted by all those who came into contact with her.
Each year, 1 in 100 babies is born with a congenital heart defect, which, in the most severe forms, is the leading cause of death in young children. Congenital heart defects account for nearly 33% of deaths in children under 1. This year, nearly 40,000 babies in the US will be born with some form of congenital heart defect; thousands will not make it to their first birthday, while many more will suffer complications and not live to see adulthood. Each year, CHOP’s Cardiac Center performs more than 10 heart transplants, 1,000 cardiothorasic surgeries, 1,400+ cardiac catherterizations, and approximately 69,000 diagnostic tests, including electrocardiograms, echocardiograms, stress tests, and cardiac MRIs. CHOP’s overall survival rate for open heart surgery exceeds 96%.
We were able to take Beyah home from CHOP on June 5, 2015 – nearly 4 weeks earlier than expected – as Beyah’s surgery was ultimately deemed successful, and she continued to be an absolute champ in recovery. Beyah is now a happy and healthy 3 and a half year old, meeting milestones we were once told we would likely never see. As the newest member of the circus, Beyah enjoys music, singing, and dancing, the beach and playgrounds, and wreaking havoc with her big sisters, Frankie and Esmé. We cannot thank the doctors and nurses, midwives and surgeons, social workers and psychologists, and all of the other specialists and professionals at CHOP enough for their kindness, compassion, support, and skill. Their expertise and determination gave us hope, saved Beyah’s life, and will continue to provide support in the future. There are no words to express our gratitude.
Next month, Beyah’s Battalion will be participating in Philadelphia Marathon events on behalf of Big Hearts to Little Hearts. We will be running for Beyah, but also for all heart babies, the families of heart babies, and the amazing Cardiac Center at CHOP, to whom we are forever grateful. Please consider supporting our team in order to support others impacted by congenital heart defects. Together, we can make more happy endings that much more possible.