A young mother wrote me a note. She lost her one month old baby and is sad because no one asked her if her little son could be an organ donor.
This was my reply:
"I know very well how much healing comes with the knowledge that a part of your loved one can continue helping another life to go on. I have never lost a child so it is impossible for me to know the depth of your grief, but I am deeply saddened for you and wish you strength during what is still a very difficult time in your life.
A few comments might help you, though. First, doctors and nurses are not directly involved in conversations about organ donation. This is left to family counselors who are employees of organ banks around the country. Sometimes, due to distance, other ongoing cases in other hospitals and simply a lack of staff, these conversations just never happen as there is no one available to speak to a family.
Sometimes, hospitals do not have the resources to help with organ recovery. Not every hospital participates in organ recovery; this is particularly the case with small hospitals who do not have appropriate staff or resources.
It is also possible that your child's medical condition made it improbable or impossible for him to be a viable organ donor and, rather than start a discussion and "get your hopes up", it was determined not to broach the subject with you and he was disqualified at the outset.
But your letter raises a very important point. So little is known by the general public about the process of organ donation. Not only is it important for us to sign up as organ donors, it is imperative that we communicate this to our primary care physicians and to our families that we have done so. Then, they may advocate strongly for us if the situation ever arises. Their first call should be to the local organ bank, even before calling the rest of the family. Although the hospital should help facilitate this, sometimes they are unable to help. There is no advocate like a family advocate."
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