Baby’s Got Down Syndrome, 2: Crossing the NICU Styx

Five hours after my daughter was born, strangers in scrubs came and arrested her, carrying her down into a world where life is in limbo. Her crimes: a broken heart and a narrow aorta.

I followed her and found myself on the wrong bank of the river Styx, wandering lost, searching for the right coin to give Charon so that he would carry my baby back across to the Land of the Living. He rubbed a cold hand on her stomach. If only she would eat. Maybe if I gave up on nursing and fed her from a bottle. Maybe if I gave up the bottle and let her get a tube in her stomach.

If only food were the answer.

My sweet daughter offered up every sacrifice she could. On Day One her tiny right hand accepted the needle coursing with antibiotics. In time she would give over her arms, legs, head, and neck to the needles. She submitted to multiple nose tubes, throat tubes, and a G-tube in the hopes that the food and oxygen they supplied would give her the strength to cross over.

But Cerberus attacked her, snapping his bacteria-filled jaws down on her. Not once, not twice, but again and again he cut his teeth into her, filling her with poisonous creatures invisible to the human eye. They tried to kill her, but needles flooded her with even stronger weapons of destruction.

And me? I stared helplessly across the river at the doorway to the Land of the Living, shaking with fear, agony, anger. I wanted to rip it all off of her and scoop her up in my arms... and run. I felt my inner self slowly crushed until nothing remained but a heavy rock in my stomach and my faith in God.

Charon tapped a bony finger on my baby’s chest. Somewhere within her, somewhere inside the greatest artery, or perhaps hidden deep in a pumping ventricle, was the golden coin he demanded. There would be no trip back across the NICU Styx without it.

From across the water a shining figure appeared with an entourage and great fanfare, and even Cerberus whimpered in his presence. An angel of the Lord, I thought hopefully. He stared down at my child and foreign words tumbled out, “Coarctation of the aorta, deep hypothermic circulatory arrest... stopping blood flow to the organs, complete AV canal defect, pericardium... sewing patches into the ventricles." He spoke for some time describing his risky plan to secure the golden coin. I could not listen, for my own voice was shrieking inside, He’s going to kill my baby! He’s going to kill my baby! Then, with sudden clarity I saw that he was not an angel. He was just a man, a man with no scars on his palms.

On Day 91, the gates of Hades opened up to receive my daughter. Cerberus drooled in anticipation. He would not let me pass with her. Somewhere beyond she would lay nearly frozen, disconnected from life, while the surgeon’s hands worked to fashion graceful conformity from a grave aberration.

I gave her back to God that day. Still, though, I called down every promise I could remember from His book. Then my husband and I, alone among the strangers on the riverbank, waited the day through to find out if we had our baby or not. If not... if not... then part of me would forever stay in that dark place.

Finally the heart surgeon came out to find us. His radiant smile gushed through my veins. He placed a glittering gold coin in my hand and I clutched it tight.

I paid it to the ferryman just as soon as I could and he loaded us into his boat. We made it almost half way across the rushing waters, almost. I was so focused on the light coming from the way out that I did not see him following us. Cerberus. He lashed his tail at her, ripping her out of my arms. She fell into the water. No, not water... blood. Poisoned blood. Sepsis.

Charon tossed the golden coin in the air: heads she lives, tails she dies. "No,” I tell him. “It doesn't work that way. God will decide."

After 113 days in the abyss, Kimani, all seven pounds of her, safely crossed the NICU Styx and entered the Land of the Living.

I thank God for this gift.

Baby's Got Down Syndrome, 1: Lunch at Pizza Hut

Baby's Got Down Syndrome, 2: Crossing the NICU Styx

Baby's Got Down Syndrome, 3: Seeing in the Raw

Baby's Got Down Syndrome, 4: She Has My Legs

Image by Esteban. Used with permission. Sourced via Flickr. Part two of a four-part series, this article is an edited reprint of two posts by The Unknown Contributor.