We knew McKenzie had a heart condition that is common in babies with Down syndrome but we never imagined it would change our lives forever. Congenital Heart Defect (CHD) affects nearly one of every hundred babies and is the most common cause of infant death. Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive.
McKenzie has spent more time in the ICU then she has at home, some days we find it incredibly difficult to leave her bedside and other days we force ourselves to get some food and fresh air. Today, we found ourselves standing in an empty room feeling complete and utter helplessness as they carried our baby away. She was only gone for an hour, but that hour that felt like eternity.
The doctor who performed her surgery were reassuring, they gave us an app called Ease and made sure to send photos throughout the procedure; this was both a blessing and a curse. We tried to remind ourselves the benefits of this surgery and the risks if she didn’t have it, but it didn’t make it any easier to know your one-month old was having surgery and this would only be the beginning. CHD is a life-long risk of health problems, there is no “cure” even when there are no more procedures, there will always be appointments, scars, risks of issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure and sudden cardiac arrest or strokes.
As we waited for McKenzie to return from surgery, I realized how incredibly different our lives were becoming and regardless of how much we explain, those around us could never understand. Becoming a heart mom wasn’t something we planned and it certainly has left us raw and exposed with emotions. We have seen things we never imagined, learned things we never knew existed and gained strength we never knew we had.