Tuesday, 06 October 2009
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Down syndrome and organ donation
I began doing some research yesterday after the blog discussing how people felt about organ donors only donating to other organ donors. The concept raised many questions for me and I realized I had no idea if a person with Down syndrome could become an organ donor. Not one to be uninformed I went in search of answers. What I discovered caused me to become a bit upset.
First, I am pleased to say that a person with Down syndrome is capable of becoming an organ donor. There are sometimes issues with the heart because about forty percent have had some sort of congenital heart defect. However, as proven here, if the heart has no issues, it can be used to save someone else. What people need to know is; as a rule most doctors will tell you the heart must be rejected. If you know the person had no heart issues, you need to push the issue so that a viable heart will not be lost.
Finding that information took me some time. Each time I did a search for organ donation as related to Down syndrome I would be sent to sites talking about a person's right to receive an organ despite having a disability. I have to say, I was shocked that there was even such a question. In further reading I discovered a case back in 1995 in which a woman in need of a heart/lung transplant was initially denied solely because she had Down syndrome. Her doctor had recommended that a transplant was necessary to save her life. Her insurer, Medi-Cal, agreed to cover the cost of the surgery. The problem? Two different California transplant centers refused to perform the procedure.
In 1995, Sandra Jensen was denied a heart/lung transplant. The transplant had been recommended by her attending physician. It was the only way to save her life. The transplant had even been approved by her insurer, MediCal. The problem - two California transplant centers refused to save Sandra's life. The reason - a categorical decision that people with Down Syndrome were not appropriate candidates for heart/ lung transplants. This had nothing to do with Sandra personally. One of the hospitals never even met or examined her. The other hospital found no medical basis for denying her. They just did not think she could understand the operation and follow the complicated procedures after the operation.
When the media got wind of the situation and word got out one of the centers reversed their decision and the transplant went forward. She was the first person in the world with Down syndrome to receive an organ donation. The woman lived another sixteen months and died as a result of a side effect to a medication she was taking to avoid rejection of the organs. Notice, she did not die because she didn't understand the procedures, she died due to a side effect of the medications.
Neither of these hospitals even took the time to examine this woman. They denied her only because of her disability. In 2003 The National Working Group on Disability and Transplantation was formed to try and prevent such a thing from ever occurring again. Their goal is to get better information out about the experiences of people with disabilities as well as to promote organ donation among people with disabilities and their families. They are also trying to work within the transplant medical community so that there is a more clear understanding of people with disabilities in regards to organ donation.
Of course all of this just hits too close to home for me. To think that if something tragic happens and my sweet Emily is in need of an organ that I might actually have to fight for her to be put on the list, scares me beyond reason. Now, if you deny her a place because of something tangible I would accept that. I wouldn't like it, but I understand there is protocol and if there were something else wrong that would mean a transplant would not be in her best interest, I would have to live with the decision. To deny her based on Down syndrome? Yeah, you would have a huge problem on your hands.
My question to those that feel that a person with a disability has less right to an available organ than those without a disability is this; if it were a member of your family waiting on an organ and one became available from a person with a disability, would you turn it down because it came from an "imperfect" person? I didn't think so.
Here is one more frightening thought; there are more people waiting for an organ than there are donors. Chances are greater that a person will die waiting for an organ than actually receive one. That is a tragedy. Please consider organ donation.
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Comments (14)
I understand that the main concern is that they give the person the organ with the greatest chance of survival. But in this case based on the information, it doesn't appear so. I think a person with a disability should have the same chance to receive an organ as anyone else with the same survival chance.
@TheTheologiansCafe@xanga - That is still problematic though. People with disabilities have lower survival rates and life-spans overall. So is that a reason to deny them when compared with someone else who would otherwise be equal but doesn't have the disability? And how do we really decide who gets an organ and who doesn't, when there aren't enough to go around? I see a few posts in your future stirring up trouble with this
@radicalramblings@xanga - Interesting questions. I at least have people talking.
That is completely unbelievable that TWO hospitals refused [initially] to do the procedure due to her condition. In my opinion, everyone deserves an equal chance at life. I would have no problem accepting organ donation from a person with any disability and best believe I have no problem donating to a person with a disability [if need be].
@waking_up_older@xanga - I was more than a bit surprised when I read the story. With such a shortage of organs, I can't believe that anyone would turn down an available one no matter the origin.
Wow. Im glad that it doesnt have to be Em to be the first (if she ever needed something). I could just see you plastered all over the news as a crazy woman and I would have to pretend not to know you! :-p
To answer your question about receiving an organ from a disabled person, I dont think you are even told where the organ comes from. So even if someone would refuse the organ if they knew, I dont think they would have that choice because they simply wouldnt know!
@der_lila_Stern@xanga - LOL, I have no doubt that you would be the crazy woman next to me on the news.
You might be handcuffed to me, but damnit you would be there. LOL
Excellent point, I don't think they do know the details of the donor. I think that is something that comes later down the line if both families agree.
@der_lila_Stern@xanga - @gwacemom - I think that is the case: a year or two later, there is the possibility of meeting the family of the donor.
I agree with you, there needs to be a cessation of this discrimination against "handicapped" people. They are people too. I would have no problem having my organs donated to a "handicapped" individual or receiving their organ, if full testing is done, and the organs are compatible.
Thanks for putting this out there.
Yay for The National Working Group on Disability and Transplantation. I hope their advocacy falls on open ears!
I immediately wanted to say that how does anyone decide who should get what. The list and decisions on who is sicker or who has a better chance of surviving is all very political. Just like these people who want to be organ donors, but only to family members. That is bull shit and such a waste. It makes me wonder if they are saying that if nobody in their family needs their organs, then they are after all not choosing to be a donor.
I also got some interesting feedback today on one of my organ donation posts about the cost to the donor family (for keeping the organs viable, such as the hospital stay) and that American docs are lazy for not cloning or using other species for sources of organs to transplant instead of using left overs.
I tell ya, I never knew this was such a controversial subject. You and I have struck a chord, Ange!!! What can be said to convince someone who has so much anger towards something that is meant to be so beautiful?
BTW..you are 91 on top blogs as of now.
@kidzandK9z@xanga - I can't imagine saying; yes take my organs, but only give them to "x" person.
I will have to go read those comments. I am often amazed at people and their thought process.
Seriously, organ donation is controversial? All we can do is continue to spread the word and hope that our voices are heard.
When I die, take whatever is left that can be used to better the life of another. I don't care who the person is; if they have a disability, if they are another race, if they believe in the same God that I do, I simply don't care. I want to give someone else's family the opportunity to not experience what my family is experiencing. I want to die knowing that I did not die in vain. How difficult is that to understand?
Yea for 91!! LOL
I agree with theologians!! Great blog will rec it for ya.
@kidzsister1@xanga - Thanks!