A Mother's Worst Nightmare: I Lost My Infant Son to Congenital Heart Disease

But I will never forget him.

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He was born after a short labor. Just three hours after my first contraction he was placed into my arms. All the pain and agony packed into a short amount of time, all to see his face and kiss his little baby lips and never let go. That boy knew how to pack a punch, that's for sure.

I eagerly wrapped him in my embrace, and as my eyes fell on his face, the words tumbled off my lips like bricks. Four fateful words that I never imagined would carry the weight of a lifetime: "Why is he purple?"

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Within seconds, a team of medical staff whisked him away and swarmed around him like bees watching their hive fall. One ambulance ride and Life Flight later, he had his first open heart surgery — at just sixteen hours old.

I wept, I hoped, and I prayed as I sat in the waiting room, my body wanting to burst out of my own skin. How could this be happening? How could my world be falling apart?

His surgeon sat me down when the surgery was finished. He explained the words that I had scrawled on a piece of paper just hours earlier, a foreign language to me: Total Anomalous Pulmonary Venous Return, a form of congenital heart disease (CHD). His heart was obstructed and his tiny body wasn't getting enough oxygen. It was bad, very bad, and his secondary pulmonary hypertension — high blood pressure in the arteries of his lungs — that was happening as a result was wicked.

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My stomach still drops as I type these words.

But my little boy wasn't one to not put up a fight. Charlie Sawyer was a boy of which legends are made, the greatest legend of my life. For six months and 17 days, I sat in a purple, rubbery hospital recliner. I absorbed it all. Every bit of medical knowledge. I memorized every medication, every dosage, every dimple on his face and his scrawny little legs, every smile, every coo. I watched families come and go, babies born, children heading in for surgery, families leaving with children in their arms. Families leaving with empty carseats.

I was thrust into a world few know exist — the world of CHD — as I lived out of a pediatric cardiothoracic intensive care unit for nearly seven months.

He and his broken little heart changed my life forever.

When I breathe in, I can still smell the Betadine that sterilized his skin before procedures. That's the smell of the hospital to me. I hear the constant pump alarms, the ventilator inflating and deflating his little, sick lungs, opening up every possible air sac to try to push the oxygen through his blood. My body feels the lack of sleep and a creaky neck from trying to find the most comfortable position in a rubbery recliner. I feel the awkward rush to beat the early-morning rounds, when the medical team entered his room, and I scrambled to be out of bed and dressed just in time. My brain feels the heaviness of the everyday learning. More knowledge. More knowledge. More knowledge. Because maybe if I knew more I could hold on to him for a little while longer.

But CHD hits without discrimination, and while advances in treatment have extended the life outcomes for many, there is still such a long way to go. 1 in 100 babies are born with CHD. That's far too many lives not to take drastic measures to help.

Because after six months and 17 days, my son's CHD overtook his body in the form of a pulmonary hypertensive crisis — his little lungs had had enough. And I kissed him goodbye, telling him it was okay for him to go, telling him I was proud of his fight, and telling him that I would never stop telling his story or saying his name.

After all, CHD took him from me, but it didn't steal him. He was and always will be my legend. He was and always will be mine to keep. He and his broken little heart changed my life forever, because even though these children are born with broken hearts, it changes nothing about their ability to love and be loved. He forever has my love.

Lexi Behrndt is the founder of the On Coming Alive Project, where parents who have lost children can share their stories. To learn more about congenital heart disease or make a donation to CHD research efforts, visit the Children's Heart Foundation's website at www.childrensheartfoundation.org.

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