After a marathon year, let’s make organ donation part of our new normal – Boston Children’s Answers

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My family’s experience with organ donation has left an indelible mark on the most important things in life.

Six years ago an organ donor saved my daughter’s life. Cora was born with a congenital heart defect called hypoplastic left heart syndrome (HLHS), which was fatal if left untreated. After more than four years living with HLHS – and six open heart surgeries – Cora’s only chance for survival was a heart transplant. On the summer day of 2015, when we got the call, she waded into a lake near us, carrying a little black backpack that literally fed the half-heart she was born with; inside, an infusion pump clicked at regular intervals, delivering measured doses of milrinone through a center line to get his fist-sized heart to do the job it was ill-equipped for. Hours later the phone rang and the selfless generosity of someone I would never meet changed my life forever.

We had spent much of that spring at Children’s Hospital in Boston as Cora’s wait for a donor heart passed the 15-month mark. The third Monday in April is a public holiday in Massachusetts marking Patriots’ Day and traditionally the Boston Marathon Run – ironic since parenting my youngest daughter often felt like a marathon. As Cora’s future was at stake, the symbolism of April also being National Giving for Life Month was not lost on me.

According to the United Network of Organ Sharing (UNOS), a deceased organ donor can save eight lives. The number of deceased organ donors and organ transplants from deceased donors reached an all-time high in 2020; to be exact, 18,316 deceased and living donors were responsible for 39,035 transplants in the United States As of December (including the year – assuming 2020?), amid the ongoing pandemic, UNOS reports that it has performed more organ transplants from deceased donors than in the past – a pair of very exciting trends.

Due to the pandemic, the 125th Boston Marathon run will be held on Monday, October 11 of this year. Change is difficult; At this point, I bet few of us would dispute that sentiment. Thinking back to July 2015 – when Cora finally received her new heart – life was markedly different from what it has been lately. After an epic surgery that lasted a dozen hours, the Boston Children became my makeshift home. I slept on a vinyl pillow next to my daughter in the Cardiac Intensive Care Unit and fell asleep listening to helicopters land on the rooftops of nearby hospitals. It’s surreal, thinking back to a time when I used to sit shoulder to shoulder with strangers having dinner on a bar stool at the Longwood Grille; stood in a Starbucks line; and threw my arms around the doctors when they announced good news of my daughter’s progress.

But change is also inevitable. Today, why not take a look at something you’ve never done before, something that might even seem a little uncomfortable to you? Register to become an organ donor. Today, nearly 114,000 people in the United States are currently on the waiting list for a vital organ transplant; every 10 minutes another name is added to the national list; and every day 20 people die waiting for their chance for a new normal.

The gift of life – through organ, eye and tissue donation – is unrestricted: you can choose to donate 24 hours a day, 7 days a week, 365 days a year . While it costs nothing to become a donor, your decision to do so – in the eyes of a family awaiting organ donation – is invaluable.

Cora lived 49 days after receiving her long-awaited heart transplant. She ultimately died of antibody-induced rejection when her own system – having been exposed to countless foreign antibodies via blood transfusions over the years – attacked the donation of a healthy transplant. Yet my family’s experience with organ donation has left an indelible mark on us about the most important things in life – namely caring for one another, uplifting one another, and cheering without. let go of our neighbors as they strive to reach the finish line that lies on their horizon.

Ask about the Pediatric Transplant Center.


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