Project Heart to Heart is a Minnesota non-profit that strives to provide support of any kind, to families dealing with Congenital Heart Defects (CHD).
Congenital (meaning present at birth) Heart Defects occurs in 1 in 100 births. CHD kills more children every year than all childhood cancers combined. Most children born with CHD require life saving open heart surgery within the first days or even hours of birth.
This knowledge was completely foreign to us before November 14, 2011. Our son Sully was born on November 14, 2011 at 3:18 pm. For 36 hours, we basked in the bliss of his birth. Hour 37, brought a terrifying twist. Our 6 lbs 8 oz bundle of joy was diagnosed with Tetralogy of Fallot with Pulmonary Atresia, a severe CHD. He was airlifted to Children’s Hospital in Minneapolis and had his first open heart surgery on November 17. 2011. He was 3 days old. Having only heard of CHD in the news or on TV, I remember walking the halls of the cardiac floor in a daze.
Doctors were speaking in words and acronyms that I had never heard of, making sure I knew the signs of cardiac distress, the new ways I would have to bathe and carry my baby; it was overwhelming. So many questions flooded my mind: What about insurance? How could I afford the gas so my husband could travel back and forth from our home and the hospital? Did I have to stop working? And the most nagging question: Did anyone understand how I feel?
Project Heart to Heart strives to make these overwhelming feelings just a little less suffocating. We want to make sure that families know they are not alone. We all fight CHD together. These children are warriors and as parents, we must valiantly march beside them, advocate for them, love them.
Most people will never get to meet their hero; I gave birth to mine.