In the wee hours of a dark January morning in 2020, I got the call that changed everything. Every parent’s nightmare. My chest burned as my heart ripped open as I heard the worst possible news about my son, a college senior nearly 2,000 miles from home. I flew out that morning to say goodbye to him, even though he was already gone.
Later that day, I stood by his bedside in disbelief as I held his hand, artificially warmed by the fluids and machines that kept his body alive. His small room was filled with life support machines, monitors, IV bags, and miles of tubing. People came and went — nurses, doctors, a hospital chaplain, respiratory therapists, a social worker, more nurses. Some were checking on my son, others were checking on me.
I’d had an end-of-life experience with an older cousin who was brain dead with multiple organ failures. Based on that, I expected that the machines keeping my son’s body alive would be disconnected shortly and I’d head home to mourn with the rest of my devastated family.
Do you remember talking with him about his desire to be an organ donor?
Steeped in shock, grief, and confusion, I sat beside my son when yet another person appeared in the doorway. “Hi, I’m Audrey.” Her kindly voice broke through the whirring and rhythmic beeping of the machines. “I’m an advocate with the state organ donor network. I’m so sorry for your loss. Your son is listed on the national registry. Do you remember ever talking with him about his desire to be an organ donor?”
I was confused, struggling to make sense of the last 12 hours of my life, but I brushed cobwebs from my mind. “Yes. Yes, we talked about him signing up for the donor registry when he got his driver’s license.” That was supposed to have been a hypothetical conversation. “We support his choice,” I added.
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The conversation with Audrey felt surreal, like everything else that happened that day. I wanted to follow through on my son’s wishes. He was sensitive and kind. He wanted to help others. His kidneys, lungs, heart, pancreas, liver, skin, and other tissues could do just that.
I wanted to follow through on my son’s wishes.
As our donor advocate, Audrey provided insights on the process and timeline. But she gave more than that. She provided helpful advice on many things people grapple with in these moments, including arranging a memorial service and managing hospital bills that would soon follow. The donor network takes over medical costs once a patient officially enters the program, but there was still the matter of the pricey care that preceded it.
She gave me her phone number and remained available to me by call or text whenever I needed her. She was such a comforting presence that she pops up in almost all of my memories of my time at the hospital, even though I know she wasn’t always by my side.
The transition into the donor network also involved a lengthy interview full of probing questions about my son’s lifestyle — alcohol and other drug use, questions about his sexual history. Um, I’m his mother! I answered as many questions as I could, which was enough to satisfy Audrey.
I expected my son’s body to be whisked away.
Because I didn’t yet grasp the complexities of the organ donation process, I expected my son to be whisked away to give his gifts. (In the organ donation world, they use terms like “gifts” — there is no crude talk of harvesting, even though I slipped and used that term more than once.) But that’s not how it happens. It can take about 48 hours to carry out blood, toxicology, and tissue typing tests. Once a person is found to be a suitable donor, there are still the matters of matching with recipients and coordinating transport logistics as well as surgical teams and space in the operating room. It all made sense. I’d just never had a reason to think deeply about the process.
I also learned that the care team doesn’t just wheel the donor away. They send them off with an Honor Walk. The doctors and nurses who worked to keep my son’s organs functioning at optimal levels joined local family, friends, and colleagues, packed shoulder-to-shoulder (pre-COVID) to line the short corridor from the ICU to the surgical suite for the ceremonial transport of my son’s body.
The brief ceremony was heartbreakingly beautiful, with an emphasis on the heartbreak of a life gone too soon. It was a hero’s send-off. He made me a proud mother to the end.
My son’s vital organs saved four lives. His skin and other tissue donations will go on to help countless others. His strong heart now vigorously thumps inside the chest of a teenage boy.
The donor network facilitates anonymous communication with donor and recipient families if they are open to it. I am. After all, I have a unique and miraculous connection with those people now. I grew those organs in my body, for my son. And now they’re working inside the bodies of total strangers, supporting the lives of people I will probably never meet. Or possibly never hear from.
But I did receive a thoughtful thank-you note from the heart recipient’s family. It acknowledged the painful reality most organ recipients face: Their tremendous gain came at the cost of someone else’s deep loss. It’s the double-edged scalpel of organ donation.
Not only did my son’s heart save this boy’s life, but for the first time, this teen is able to run around and play sports, something his heart condition prevented him from doing before. He has a new lease on life, new ways of moving through the world. I cry with joy at the thought, although my tears are understandably bittersweet.
My son’s final act of kindness is a gift that outlasts his life. I still feel profound grief as I slog through these pandemic days. But I take solace in the fact that I can find meaning in my son’s death as well as his life.
Most of us have the same power to leave a long-lasting gift. You can save lives and change lives (even while you are alive in some cases). Please talk with your loved ones of all ages about organ donation. Find out what their wishes are and make yours known.
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