I mention in my TEDx talk on organ donation that families and loved ones of deceased
organ donors often experience a profound sense of comfort and closure knowing that the tragedy of death and deep loss resulted in a renewal of life in many others. I had come to know this by talking with donor families. But recently, I experienced these powerful emotions first hand.
My Step-mother Sandy had been a loving and caring wife to my Dad for decades. One day, she was not feeling so well with some vague abdominal discomfort and malaise. Being raised a tough farm girl, she carried a sense of tenacity and stoicism into her adult life, so she toughed it out for a while until she really got sick. All of a sudden, she was in the operating room where the surgeons removed a short segment of dead intestine that had become trapped around some scar tissue from a previous surgery long ago. Although the surgery was successful, she went into an intense inflammatory state after the operation, requiring mechanical ventilation, medicines to keep her blood pressure up, and broad-spectrum antibiotics. She was critically ill, but she was receiving superlative care and, after 10 long days, things seemed to be getting better.
Then she suffered a massive stroke.
This turn of events was completely unexpected and tragic. There was too much blood and tissue damage in her brain for the Neurosurgeons to be able to fix. She was not expected to have a “meaningful neurologic recovery” (that is, she would never be able to wake up and talk to us and laugh with us). Worst of all, at least as it appeared to me, my father, and my brothers, she was not dead.
Sandy had specifically stated in her living will that she would not want to be kept on artificial life support in a futile situation. I knew very well from my experience, however, that withdrawing care at this point would not result in her passing. Her heart was beating strong without any medical support. The breathing machine was on minimal settings and she was essentially breathing on her own.
The stroke had delivered a cruel non-terminal blow.
So we waited. We made sure that she was not suffering and that she was surrounded by love because that is all that is important in the end. When I was young, I never understood Johann Sebastian Bach’s song “Come sweet death, come blessed rest”, but now I did with all my heart. The only possible good thing that could come out of this horrible situation would be if Sandy could become an organ and tissue donor. She could live on in others. She could save many lives. She could improve many more lives. We waited until she either progressed to brain death or to the point where she could become a donor after cardiac collapse. We waited several days, not rushing anyone into actions that would spoil her candidacy as an organ donor.
Sandy eventually progressed to brain death and we asked the ICU to contact the local organ donor recovery organization. They compassionately and expertly took over her care and Sandy became a donor. Of note, Sandy was not on the New York State Donate Life Registry, but Sandy, Dad, and I often had conversations together and we knew she wanted to become a donor when the time came. She even sported bLifeNY.org stick-on tattoos in support of donation awareness, striking up conversations with random people in the grocery store check out line.
Imagine if we didn’t have this conversation beforehand and Dad had to make this decision when he was shocked and devastated with grief? We were so grateful that we had spoken about this and we knew exactly how Sandy felt about being an organ donor.
My family and I now know that the comfort and closure of organ donation is real. Having been already registered to be a donor would have been ideal, and maybe one day it will be easier and more socially acceptable to register, but the conversation was key. Talk to your Mom and Dad, your kids, your brothers and sisters, your relatives, your loved ones, your friends, and random people in the grocery store check out line. Saving lives and improving lives through organ and tissue donation is miraculous. These miracles start with another miracle: the decision to become a donor.