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Cora, four weeks following her heart transplant, in August 2015.

National Donate Life Month stresses the importance of organ donation

By Friday, Apr 5, 2019 Life In the Berkshires 4

Sandisfield — I am no stranger to crying, particularly in the hazy pre-dawn hours before a hefty dose of caffeine has permeated my veins and I struggle to swipe the sleep from my eyes. This morning I was caught particularly off guard: I was driving my daughter to the bus stop, a quotidian task I undertake most days, when I caught a glimpse of her in the rearview mirror. It was a wholly unremarkable image, and yet it caused me to burst into tears as we slowed to a stop at the bottom of Route 183 in New Marlborough. In the small slice of space just above where the plastic frame of my rearview mirror meets the glass, I caught Alice’s brown eyes looking straight at me.

The experience—fleeting, at best—immediately conjured a similar image of her little sister. In the photo, Cora is at the eye doctor in Boston, being fitted for glasses. She sits on a tall stool, clad in a rainbow-striped cardigan sweater, peering into the square-shaped mirror before her. In this particular photo, none of Cora’s face is visible; Instead, just above the shiny black edge where the frame meets glass, Cora’s big, brown eyes can be seen sporting a diminutive pair of purple, plastic-framed glasses. The photo is dated April 2013 and Cora is 3 years old.

“April is the cruellest month,” pined T.S. Eliot in his epic poem “The Waste Land.”  The poem, published in 1922, explores the contradictions that abound during the first full month of spring, a season known for “breeding/Lilacs out of the dead land, mixing/Memory and desire, [and] stirring/Dull roots with spring rain.” For me, April is nothing short of bittersweet. In contemporary circles, April is widely gaining recognition as National Donate Life Month, established as a means of raising awareness about organ, eye and tissue donation, a fact that resonates with me on a very deep level: A scant seven weeks before my youngest daughter’s death, an organ donor saved her life. That little girl was named Cora.

Before Cora, an indelible mark on how I now keep track of time, I shuddered at the thought of organ donation. While I can’t quite put my finger on it, the idea scared me because, let’s face it, dying can be a little scary. Or, at least before Cora died, that’s how I felt. Cora was born with hypoplastic left heart syndrome, a congenital heart defect with which she was diagnosed in utero.

After five open-heart surgeries, the first of which she underwent when she was just days old, Cora was diagnosed with heart failure and placed on the transplant list; this happened the week after her fourth birthday, an occasion we celebrated with a Sid the Science Kid-themed birthday party at home complete with test tubes and magnifying glasses for her friends to take home and an impossibly large Red dye #40-laden Elmo cake at the hospital (that was the one year she spent her birthday as an inpatient).

Cora went on to spend more than 18 months on the transplant list, initially as a status 1B as designated by the United Network for Organ Sharing. She was raised to a status code 1A, reserved for candidates who have the highest priority on the basis of medical urgency, after she became dependent on intravenous milrinone, a medication delivered directly to her tiny, broken heart through a central line infusion fueled by a pump she carried in a tiny black backpack. Cora finally got her new heart, an event we waited for with proverbially bated breath, in July 2015. Unfortunately, due to her long history of surgeries and blood transfusions, she died of complications arising from antibody-mediated rejection. She was just weeks shy of her sixth birthday.

To date, almost 114,000 individuals on the national transplant list are awaiting organ donation; their families, living in limbo, are just waiting for the phone to ring. Of those individuals, more than 2,000 are pediatric patients, and another name is added every 10 minutes. Sadly, on average, 20 people die every day from lack of available organs for transplant. Today, as a result of my journey with Cora, I am a registered organ donor, a designation announced by the small red heart icon in the lower right-hand corner of my drivers’ license. But that is my choice, and I have grown to respect others’ choices, even those in my own family, who choose not to register. I have one relative who worries that if he registers, the paramedics might not work too hard to resuscitate him should there be an accident; I have another who has heard that organ donors don’t get top-notch medical intervention should they be hospitalized. I know these to be tall tales, likely stemming from fear, so I choose to educate, not preach, in hopes of spreading awareness about an issue I hold close to my heart.

Truth be told, end-of-life decisions are ultimately made by the living. If your desire is to be an organ donor, talk to your friends and family. Express your wishes, make clear your intentions and implore those who love you to support your decision. And if you do not wish to be an organ donor? Have the same conversation. Did you know that one organ donor can save eight lives? It’s a pretty cool fact, one I’m pretty sure I learned from chatting with a friend. In short, never underestimate the change that can come from a simple conversation around the dinner table, or a walk around the block. It’s April, after all. Get out there and enjoy life, especially if it affords you a moment to take pause and consider a new perspective—not unlike the one Cora must have experienced the day she first donned those purple plastic glasses, causing the myriad wonders surrounding her to snap sharply into focus.

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