There are going to be no winners in this case of doctors thinking they know better!
Back in the ’70s and ’80s when other medical injustices were being carried out doctors caring for sick babies were also taking the hearts from those that died for future medical research. The problem was that it was without consent.
We suffer enormously in this country because when an organ donor dies the grieving family invariably vetoes the donation. If they will act against the wishes of a family member how can they be expected to OK the donation of organs from a child who has had no opportunity to crawl, let alone consent?
So, the doctors took the hearts. It was well meaning but in doing so, and in not telling the families, and in lying to those who asked, they committed great errors. Back in 2002 the hospital started returning the hearts. Science has moved on, pickled hearts aren’t necessary anymore. What a shock for the families concerned.
Some are now suing the hospital and asking for $90,000 in compensation. You can’t put a value on the hurt but nor should you! I can’t see that the money would be anything but “dirty money”, never enough, but tinged with such sadness. How on earth could you spend it without feeling like you’d sold something.
I have a personal perspective on this. Back in the early ’70s my little brother James was born. The obstetrician botched his birth. He wasn’t stillborn but he died being born and his ashes are buried with his paternal grandparents. The hurt and pain, three decades later, still swirl around the family and today we would have groups like SANDS (info on this list) to guide our way.
My mother, my sisters, and I talked about how we’d feel if James’ heart was in the “library” and agreed that it would feel good if he had been able to help the doctors help other children. His short life would feel less like a waste and we would have a link with the unknown children that followed, who lived because the Doctors knew that little bit more. So we made the phone calls, they made the investigations and we heard back that “No, they didn’t have his heart”.
There’s a certain irony that they took hearts from families that have since objected and not from those who would have willingly. Ofcourse, at the time we’ll never know what any of these families might have said, but experience tells me they’d have said No. And then where would be today if the Doctors hadn’t learnt?
In 1986, after a week on life support my 7 1/2 month old sone died. At the time we were asked if we would consent to a post mortem and we did, we also offered his organs for donation.
At that time nobody ever told us that they may retain any organs or part of organs – tissue.
When I dressed my son ready for burial, i lifted him as I did when he was alive, and much to my shock and horror, he nearly flew over my shoulder. At the time, we paid no attention to it, wrapped up in the grief and tradegy of the situation.
When the baby hearts scandal broke, the memories came back and I became very suspicious. So I asked the questions and to my horror, I discovered that not only had the hospital removed my son’s brain, taken tissue sample for psoterity (Ihave no problems with their explanation for that) but that the hospital concerned had “disposed” of my son’s brain.
They threw it away? Again, wrapped in the horror of this new information, I did not ask how they disposed of it. Certainly, they never offered it back to us.
So, not only do I live with the painful knowledge that my baby died, and that they still can’t tell me why, but I now know that the vast majority of his brain was considered to be waste product.
As to the matter of taking it to court – no amount of money will compensate for the death of Kasey, but sometimes I think that the only way to make organisations like these understand is to hit them where it hurts – their money. At this point I am not registered as a claimant in the case currently before the courts, but that may or may not change.
I am really angry and this latest discovery has had such a profoundly devastating effect on me and my subsequent children. Who makes it up to them?
[…] I made my position on this clear in my baby hearts post and nothing has changed. I don’t have the skills or expertise to harness certain bits of information. If you do, then great! I won’t mind if you earn a living from it, just don’t hold it too close… dna, dnz, gene bank, indigenous, James Waerea, maori, national geographic magazine, professor raymond bradley, raymond bradley, sir peter buck, tikanga maori, whakapapataapuu No Tags « NZ Votes Aspartame (E951) detox? » […]