My daughter Daisy belts out show tunes like Ethel Merman. “I can’t believe she took you away from Broadway,” a nurse once told her, referring to our move from New York to Omaha. Annie. Dreamgirls. Mama Mia. Name it, she’ll sing it, over and over and… Not surprising, given her sparkly spirit. And a fact that surprises everyone who meets her: Daisy spent her first seven months in the Neonatal Intensive Care Unit, coddled by a captive audience of care-takers.
In February, 2003, Dais was born with Gastroschisis, a rare congenital defect in which her large and small intestines developed outside her body, in the amniotic fluid. After birth, surgeons whisked her off to the O.R. and attempted to save her bowels, which were mostly necrotic. Two weeks later, a majority of her intestines were removed. Daisy’s new diagnosis (Short Gut Syndrome) and anatomy (or lack thereof) made her unable to absorb enough nutrients. She survived on tube feeds and TPN—Total Parenteral Nutrition, an IV fluid which contained a fat emulsion that often destroys the liver. Fortunately now there’s Omegaven, an omega 3-based lipid solution made from fish oil that can reverse or ameliorate liver disease.
After three years of life-threatening complications, we flew to the University of Nebraska Medical Center, which has the world’s best intestinal rehabilitation and transplant programs. Back then, I refused to say transplant, a frightfully futuristic word that I believed might seal our fate. But life has a funny way of handing us the truth and five months later, on July 20, 2006, Daisy received a small bowel, liver and pancreas transplant.
Four years later, Daisy is blooming. A typical first-grader. Sort of. Pre-transplant, sugar was a no-no. Now she’s hooked. Recently, she tasted Nutella for the first time. “I just bit my tongue and I really don’t care!” she said. How profoundly blessed we are to be granted moments that seem simple on the surface—we eat, we talk, we laugh—all because of one precious soul: Daisy’s organ donor. Each night during prayers, we talk to her organs and with deep gratitude say: “Thanks guys down there. Amen.”
By Joey Hoffman, Daisy’s mom.