Susan Senator
All happy families are not alike...
All happy families are not alike...
Amelia’s Kidney; Our Heart
Many, like the extraordinary blogger and advocate Sunday Stilwell, have been leading the charge on this story (thanks, Louise!). Amelia is being denied a kidney transplant because she has been deemed unworthy: she has an intellectual disability, mental retardation. Change.org has a petition going around to protest Children’s Hospital of Philadelphia’s nightmarish attitude towards this two-year-old girl. Please consider signing it and adding your voice to the wave of outcry. This should not be happening, not on our watch.
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Thank you so much Susan for writing about Amelia! I will add your blog post to her petition site!
signed
Your story is flat out WRONG! Amelia is not being denied a transplant because she has been deemed unworthy. She’s being denied a transplant because she is a POOR candidate. What makes you think that you know better than a transplant surgeon about who should or should not get a kidney? If you wanted to be a transplant surgeon, you should have gone to medical school instead of writing books or blogs. As a surgeon, I have and never will perform an operation against my will. I have my own system of values and have declined to offer operations for a variety of reasons. The family can always get a second opinion elsewhere from a surgeon who shares their value system. But FORCE a surgeon to operate. NOT ME!
To whom it may concern…Hi, I am trying to get the letter I wrote below to the parents of this little girl. I am a transplant recipient right outside of NYC. If this could get passed along to them somehow, I believe it will help a LOT. Thanks so much. David Bobick
To the parents of Amelia,
I signed your petition because I am a transplant recipient and I do not believe that transplants are or should be based on mental or physical limitations. I am trying to get this message to you or contact you for no other reason than to let you know about Rogosin Institute in NYC at NY Presbyterian Hospital on 70th@ York Ave. It’s worth the 2 hour trip up to NYC.
If you get this and decide to contact them, please ask for Stephanie L. Donahue, N.P. at 212-746-1591. She will get you to the right people. Please, please, please contact me through my e-mail (ginfire2000@yahoo.com) if I can help in any way. I do not believe they would turn anyone away simply based on mental or physical limitations unless your Daughter is not strong enough to withstand the procedure. Of course I cannot make any promises to that effect but it is worth the effort to find out. Dr. Sandip Kapur was my Surgeon and he is the head of the entire transplant department at NY Presbyterian. They do not come better than him. His Partner Dr. David Leeser is one of the best as well. If you can get up here you will be in the most capable of hands.
Someone did the very same thing for me 5 years ago when I was scared out of my mind about how I would ever receive a transplant and Stephanie Donahue was the first person I spoke to at Rogosin. She got me on the correct path and here I am on the other side of the transplant 4 years later with a healthy live donor Kidney doing GREAT! Again, please contact me through my e-mail if I can help. I will answer any questions I can.
I hope this finds you well.
Sincerely,
David Bobick
What a lovely thing you have done, David. Thank you. I will post this on FB…
Hmm… no one is forcing anyone to do anything. But I could ask you the same thing: what makes you think you know who deserves to live and who deserves to die? I think if you were the parent of this poor child, you would not feel this way.
Is there a FB page for this Amelia’s situation??? I’ve been looking all over FB and nothing seems to come up but of course, I could be putting in all the wrong info. Their predicament concerns me a lot because I have been so lucky with my transplant that I feel I want to ..well…Pay it forward if you will 🙂
Thanks.
David
David: look for http://www.extremeparenthood.com: http://www.extremeparenthood.com/p/about-me.html Contact her, she is the one behind the change.org petition that got us all interested in Amelia’s case.
I don’t decide who lives and dies. That’s up to God. The transplant surgeon didn’t give Amelia the disease either. The surgeon chooses how to apply their skills and knowledge in the context of their value system. Just because we look at these situations differently doesn’t make one or the other necessarily right or wrong. I’m just saying that the decision is the surgeon’s and we have to respect that decision. If the parents disagree, they’re not going to change the surgeon’s or hospital’s mind by calling the local newspaper or by putting it all over the internet. Let them get a second opinion elsewhere.
Who is this so called Doctor? Of course she is being denied, soley on her disability. Who the heck are you to say otherwise? Trust me, we all die at the end, including Doctors….I see it all the time where I work. Retired Doctors at the end stage of their lives…I always wondered how many times they didn’t take the time to do whatever it took to save a patient.
But Mr. or Mrs Surgeon…
Do you think you’d be saying the words you are saying so freely if it was YOUR child who was going to die? Really…think about that long hard and deep. If YOUR child had the condition that this little girl has and a surgeon like yourself said…”well, sorry sir/Ma’am, your child is going to die because of my value and belief system. I’m the surgeon and that’s my final decision.” Ya know, you can answer my question any way you choose but I simply do not believe you would accept that and lay down and let your child die.
Your value/belief system should not even come into play when life or death is involved because this is not about YOU the surgeon. It’s about somebody’s little girl (Amelia in this case) and being the cause of 2 parent having to watch their child die…most probably…in their very arms. If you can live with yourself and that decision…well, I guess I know what hospital I’m NOT going to. I’m not a parent but I can see that as a deplorable attitude.
I’m a musician and I didn’t choose a Musicians life for the money…fame or fringe benefits. I became a musician because I want people to hear my music and affect people’s lives. You SHOULD have become a Surgeon because you want to save and affect people’s lives…not your ego.
Sorry to say this but you are wrong sir/ma’am. Making that kind of a decision IS playing God.
Thanks for listening/reading
Dave
P.S…
I quote you verbatim Mr./Mrs. Surgeon…”What makes you think that you know better than a transplant surgeon about who should or should not get a kidney?”
I know you were not talking to me when you said that but my answer to your question (whether you want it or not) is…
I am a Transplant recipient. That’s who I am. I’ve learned a thing or two about life because of my situation. It’s short. You should not be in the business of making it shorter for someone else because of a belief system.
Sorry…
Having actually performed kidney transplants during my surgical training, and worked with a transplant team, I can easily say that the disability wasn’t the only factor in declining to operate on Amelia. Rose, you have no idea of everything that goes into a transplant. From evaluation to finding a donor, from performing the surgery to providing the aftercare. If kidneys grew on trees, this would be an easier decision. But they don’t, and people die every day waiting for a kidney. Having a directed donor only makes part of the process easier, not the whole thing. Most of the time, the easiest part of the transplant process is the surgery- It takes less than 2 hours. It’s everything else you have to consider.
Most of the time the value systems of surgeons and their patients intersect. When they don’t, are you suggesting that you force the surgeon to operate against their will? No, there is an easier answer- find another surgeon!
Remember, the surgeon didn’t give Amelia the disease. And the surgeon doesn’t decide how long she is going to live. Only whether or not he or she is willing to perform the transplant. Find another surgeon!
Dave, would you like someone to FORCE you to play music that you don’t want to play? Would you force me to perform an abortion? Who get’s to decide who has to do what? Each individual has the right to choose their own actions. That’s my whole point. Why vilify the surgeon? He’s not making her life any shorter.
And finally, if you disagree with your surgeon, go and find another surgeon.
Hopefully, they can find another surgeon. I’m not sure where they all stand at this moment. I think that’s a good solution. Another important point is that apparently the hospital has to communicate better with the family so that they understand any complexities — if indeed there are any. From how the mother reported it, they were told the rejection solely had to do with her daughter’s intellectual disability.Even if there are more layers to it, the family did not get that message.
But it’s not that the surgeon won’t do the operation, it’s that she’s disabled and her parents were actually told that Amelia won’t get a kidney transplant because of her Down Syndrome. Nobody is trying to force him to operate against his will (that just gives me a vision of a surgeon frantically operating while her parents each hold a gun to his head!). But it makes it seem like because she has an intellectual disability that the hospital feels she is unworthy of a longer life.
I agree with you Susan, that if that wasn’t the only deciding factor,better communication is needed. If there were other reasons, it was not clearly stated.
My cousin, who had downs syndrome, just died last year at the age of 53. He brought joy to our whole family and everyone who knew him. To say he contributed less value or good to society would be wrong.
Choosing who is valued and who isn’t or who lives and who doesnt is not for us mortals.
Mathew