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Artist’s Statement: Rainbows to Remember

2021; Lippincott Williams & Wilkins; Volume: 96; Issue: 4 Linguagem: Inglês

10.1097/acm.0000000000003903

1938-808X

Ryan M. McAdams,

Childhood Cancer Survivors' Quality of Life

Baby Sophia weighed one pound and twelve ounces when she was born. Two months later, she no longer needed her invasive breathing machine. She did not have any bleeding in her brain, and her heart beat normally. However, she had trouble tolerating gavage feeds. Her labs, which showed mild liver dysfunction, gradually worsened so she was transferred to our Level 4 neonatal intensive care unit (NICU). She soon became our sickest baby. Her parents were told that Sophia only had a 50% chance of survival. When I met Sophia, she was hooked to a breathing machine and her skin was yellowed by liver disease. Due to concern about a bowel infection, an intravenous line in her arm provided her nutrition. Beneath the tangle of tubes, tape, and wires, a beautiful warrior princess looked up at me with lively brown eyes. As I looked back at her, I softly stroked the fine wisps of her hair to comfort her. She was battling to survive, but time was running out for her. Determined to discover the cause of her liver failure, I dove into her history and the medical literature on infant liver failure. I suspected Sophia had gestational alloimmune liver disease (GALD), a rare cause of liver failure that is often fatal despite timely medical or surgical treatment. After obtaining more laboratory studies, I contacted the world’s leading GALD researcher in Chicago. He agreed with the diagnosis and recommended we treat Sophia with a double volume blood exchange transfusion and intravenous immunoglobulin. We all were buoyed by renewed hope. A week later, in the dimly lit NICU room, with the cyclic humming of the ventilator in the background, I listened and watched as Sophia’s mother held her and sang “Somewhere over the Rainbow.” The beautiful scene was a flicker of light amongst the impending darkness as Sophia’s lungs, liver, kidneys, and heart began to fail. I was heartbroken. As I watched Sophia’s father caress her tiny hand and her mother lean over and kiss Sophia’s head, I dreaded telling them where we were headed. I stood with Sophia’s mother and father, all of us gently resting our hands on Sophia’s beautiful, swollen, little body. “Sophia is a mighty warrior,” I said, trying to hold back my tears. “But she can’t win this battle.” I looked her parents in their eyes. “It’s time to let rest. She needs you to hold her and comfort her.” Her parents, seated together, in the most courageous expression of love, held Sophia. Through tears and weeping, her mother somehow managed to sing, “Somewhere over the Rainbow,” as Sophia let out her final breaths. Later that day, her parents saw a double rainbow over a nearby lake. “The rainbow showed me that Sophia made it over the rainbow. I knew she was safe. She reached the rainbow, a place where she will always live on for me,” her mother said. To honor Sophia, her parents released a bunch of colorful balloons and had a tree planting ceremony. During her subsequent pregnancies, Sophia’s mother received intravenous immunoglobulin, which prevented Sophia’s sibling from getting GALD. Now Sophia has a healthy sister and a brother who will carry on her little warrior legacy. I painted Rainbows to Remember, on the cover of this issue, to honor Sophia’s short, but important life so she will never be forgotten. With every rainbow, I remember her. I see the incredible colors that occur when the sunlight kisses the rain. Author’s Note: The names and identifying information in this essay have been changed to protect the identity of the individuals described.Rainbows to Remember