Congenital heart defects are the leading cause of infant death in the United States.

Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Approximately 10 percent of those babies will not live to celebrate their first birthday. For me, this is not just a scary statistic – this is reality. Our daughter lived for 23 days before she became part of that 10 percent. Sadie was doing very well until she suddenly stopped breathing in my arms while at home on December 7, 2014. I gave her CPR until the ambulance came. My husband and I then watched for 45 minutes as the ER doctors at the nearby hospital tried everything they could to save her, but they couldn’t get her little heart to start beating again. We had to tell them to stop – her brain had been deprived of oxygen for too long. That was 63 days ago. We do not yet know what triggered Sadie’s sudden death, as her autopsy is not yet complete. We have been told that pediatric autopsies can take several months, as there is not only so much unknown about CHDs, but also about how an infant’s body functions. It is much different than that of an adult body, more complex and less understood. The more I learn throughout this process, the more I continue to be shocked by how much is unknown. What I do know is that my baby is dead and that my life will never be the same. I haven’t yet been able to find a word to adequately describe the pain that comes with Sadie’s death. Losing a child is something no parent should ever have to endure.