How Blood Dances

Debi Lewis Special Needs

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Before my younger daughter was born in 2005, I hadn’t thought at all about the delicate parallel dance of air, food, and blood-flow in the human body.

There is a place in all of our chests where these three forces can whisper and beckon to each other from centimeters apart. Air flows down the trachea through our throats and into our lungs. Food and liquid are swallowed and move from the mouth down the esophagus into the stomach. Blood pumps via the aorta, which creates an arc from the heart down to spread and become every other artery in the body. They live so close to each other; I never knew how close. It’s dangerously close.

My daughter Sammi was born with a double aortic arch. Instead of that one graceful, fountain-like arc, her aorta was split in two, both sides pumping blood through and meeting again, together, to stretch into fingers that extended everywhere else in her tiny body. The aortic arch that split and met again created what was known as a vascular ring. The ring encircled her trachea and her esophagus.

Now the whispering between these three conduits—air, food, blood—was overpowered by blood. The double aortic arch quieted the air, quieted the food, made them slaves to its pulse. When her pulse quickened, the arch tightened, trapping food and intensifying the already tight squeeze of air. In the space that could have fit in the middle of my palm, the major systems of her body were at war.

We didn’t discover this until she was over a year old and through an utterly befuddling series of average respiratory infections that landed her in the hospital. She breathed, she nursed, and she grew—but the effort it took became unachievable when she was sick, and we never knew why. Her regular hospitalizations forced me to quit my job, isolate her from other babies, and, worst of all, dedicate years of our relationship to a battle against her own body.

Congenital heart defects affect one in a hundred children in this country. This umbrella covers everything from small holes called ventricular septal defects which often close on their own with no intervention, to major issues like Tetralogy of Fallot which combine four frightening cardiac issues requiring a series of major surgeries. My daughter’s vascular ring fell somewhere in the middle; she’s had two surgeries so far, and another may be years away or never necessary. We count ourselves lucky after spending time in the cardiac ward of the local children’s hospital, waiting for her surgeon to give us good news while other families waited anxiously for the ambulance bringing them new hearts for their babies.

For families of all children affected by congenital heart defects, minor moments take on enormous weight. Our daughter’s life has been governed largely by her ability at any given time to swallow her food around whatever was compromising her esophagus; you will catch me from time to time holding my breath as she eats, releasing it as she clears a plate or asks for seconds.

She is now nine, and this fall she ate her first sandwich.

Sammi was 14-months-old when a surgeon reached into her chest through an incision in her back and set free her esophagus and her trachea. She was eight when he moved her aorta out of the way again. Each time, he interpreted this dance—air, food, blood—and joined it long enough to bring it gently into balance again. I will be forever grateful.


About the Author

Debi Lewis

Debi Lewis is currently at work on a memoir about her family's experience through Sammi's journey through medical adversity. You can read her blog at .

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