On the same day my husband and I discovered during a routine ultrasound that the baby we were expecting had a severe congenital heart defect that would need to be repaired in infancy by way of open-heart surgery, we also learned that abnormalities of the chromosomes that carry genetic information are associated with congenital heart disease.

“This particular heart defect is almost always indicative of a diagnosis of Down syndrome,” our maternal-fetal specialist told us.

We learned that with well-described complex congenital abnormalities, such as Down syndrome and many other syndromes, have an increased incidence of certain types of congenital heart disease. We were told that our baby’s, Archie’s, particular defect, an atrioventricular defect or endocardial cushion defect, is often repaired when an infant is six-months of age and big enough to better tolerate surgery.

But our sweet Archie was much sicker as an infant than his prenatal diagnosis had indicated he may be. Days in the Neonatal Intensive Care Unit turned to weeks, and then months. Hope waxed and waned. We almost lost Archie twice before the surgery to correct his heart defect, and then nearly again that day. It felt as if our hearts stopped as we sat helpless and terrified in the waiting room as Archie’s did once, and then twice, as he lay tiny and motionless on the operating room table. Sometimes even now I watch my son play and wonder how in the world it is he’s here with me, all dimpled grin and dancing eyes.

Archie had many difficulties and complications related to his heart defect, and his time before and after surgery. Our pediatric cardiologist has confided in me more than once that he never thought Archie would have made it as far as he has today. That statement weighs heavy on a mother’s chest, that’s for sure.

But the miracle of time has delivered Archie to the state of well being he enjoys now. Gone are the numerous heart medications, and the carry-it-yourself, continuous-flow oxygen tank, as well as the unending series of appointments with the pediatric cardiologist. Thank God. Now Archie only sees the pediatric cardiologist once a year, and his flawless repair ensures that his little heart beats on, day after day, keeping time, endlessly, endlessly…