Miel et Lait

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Amelia Rivera: The rebuttal

Posted by on 1/17/12 • Categorized as Wellness

#TeamAmelia  is a campaign to persuade the Children’s Hospital of Philadelphia (CHOP) to reconsider their decision denying 3 year old Amelia Rivera a life saving kidney transplant. Amelia has an army of advocates spamming the CHOP Facebook page with comments that demonstrate the ignorance of #TeamAmelia. “You don’t have a right to decide” is a popular comment. Ironic, but popular. I am of the opinion that the highly trained, highly qualified doctors, who are intimately aware of the intricacies of Amelia’s condition, are the most qualified individuals to decide if Amelia is a candidate for an organ transplant.

Understandably, the following admission won’t win me friends, except maybe Lisa Belkin, and I doubt that little-ole-me can influence people. I do not support Amelia Rivera receiving a kidney transplant at CHOP. Go ahead, get vigilante on me. Because vigilante is exactly how the #TeamAmelia supporters have been behaving. Barreling in, guns ablaze, because Amelia’s mom said that the social worker said that the doctor said, “Amelia doesn’t deserve to live because she’s a retard.”

I should disclose that I was not present when the Riveras met with the doctors at CHOP. I can’t testify to exact words that the doctor and social worker used. Personally, I think the doctor was misquoted, possibly by a mother who was in shock after hearing news she wasn’t expecting. But, the story is evolving as it makes its rounds through the blogosphere, and it is stinking like a big fish.

Organ transplants are not as simple as diagnosing Strep throat. There is a lot of work surrounding a transplant, including analyzing if the patient is a good candidate for a transplant. Maybe you, whoever you are reading this, have medical training Maybe you are a doctor. I have no medical training. That being said, I do not think a person with genetic condition that has a side effect of chronic kidney failure is a great candidate for a kidney transplant. Yes, the chromosomal disorder Amelia suffers from, Wolf-Hirschhorn syndrome, has a slew of side effects, including chronic kidney failure. A kidney transplant is a temporary solution.

According to UNOS, there are currently over 100,000 candidates for a transplant. Only 70,000 are actively waiting for a transplant. Between January and October 2011, less than 25,000 transplants were performed. Why the discrepancy? Because some people are temporarily ineligible for a transplant as a result of medical conditions. Medical conditions that would lead to rejection of the organ, and medical conditions that suggest the patient will not enjoy a long term benefit of the organ, are removed from the active list.

Due to the shortage in supply of organs, not everyone who wants a transplant is able to receive a new organ. In fact, 18 people die every day while they wait for a transplant. Medical professionals, highly trained, highly qualified doctors, determine and rank one person’s eligibility for an organ as opposed to another person’s. In response to the commenters who proclaimed, aghast, “who are you to decide?” I say that the docotrs are precisely the ones who should be making the decision.

As of 5pm on January 17, 2012, there were over 3200 Google results for the Amelia Rivera kidney story. There is overwhelming support for Amelia and her family. Caroline Bracco Natale weighs in with the comment on the CHOP  Facebook page, “Well now you’ve done it. You have infuriated thousands of parents of special needs children, including myself. You just woke a sleeping giant. Your PR team must be scrambling….”

No, Caroline, the PR team is not “scrambling.” The sleeping giant you speak of is both blind and ignorant. There is no place for PR or the media in determining medical treatment.

Have you registered to be an organ donor?

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  • http://thepsychobabble.net thepsychobabble

    Interesting post. No hate here, you presented a thought out reason for your argument at the very least:) I’ve seen the hashtag floating around, but tbh, I haven’t had time to really look behind it.

    • Anonymous

      Thank you! It bothers me that some opportunists are twisting this into a discrimination case, when it clearly is not.

  • http://twitter.com/scargosun scargosun

    Wow.  You seemed to have drawn some unsubstantiated conclusions of your own.  You do realize that this is only a step towards the ‘experts’ deciding to make this type of decision based on socioeconomic standards or total IQ (not just cognitively impaired).  Did you know that a convicted child molester received a kidney last month?  A CHILD MOLESTER.  I guess he deserved to live more than Amelia, according to you.  Also, did you REALLY just call the parents of special needs children, “blind and ignorant”?  You are actually the ignorant one.  You have decided to doom and entire group of people to death because you believe you are better than they are.  If that is not ignorant and short-sighted, I don’t know what is.  By the way…I do not have a ‘special needs’ child, nor children at all.  I am simply human.

    • Anonymous

      Thank you for pointing out that a CHILD MOLESTER received a kidney, as it proves the point that the decision to perform a transplant has nothing to do with how “good” or “bad” a person is, it has nothing to do with the patient’s contribution to society (or lack thereof). Transplants are purely based on the facts of medicine- sadly, Amelia’s condition (ie, chronic kidney failure) does not make her a good candidate for the transplant. It has NOTHING to do with being “special needs” nor is it discriminating against her “special needs.”

    • Anonymous

      Thank you for pointing out that a CHILD MOLESTER received a kidney, as it proves the point that the decision to perform a transplant has nothing to do with how “good” or “bad” a person is, it has nothing to do with the patient’s contribution to society (or lack thereof). Transplants are purely based on the facts of medicine- sadly, Amelia’s condition (ie, chronic kidney failure) does not make her a good candidate for the transplant. It has NOTHING to do with being “special needs” nor is it discriminating against her “special needs.”

  • ndh

    According to the story, the doctors refused to tranpsplant even a family donor organ. Would you have the doctors demand that this organ be forcibly removed from the family member and given to someone more worthy? After all, it was going to be donated anyway.

    • Anonymous

      The doctors refused to perform a transplant on Amelia because she is not a candidate for a transplant. There’s no need for the family to try and find a directed donor, because the transplant can’t occur.

      • ndh

        If you knew that, then why bother quoting statistics about the length of the donor list, since they are irrelevant? 

        Besides: she would not be the first person with Wolf-Hirschorn to receive a kidney transplant; and the hospital itself is now inviting them back to discuss a family donor transplant. So maybe the issue isn’t the fact that doctors have ruled out the operation, rather that that one doctor did.

      • ndh

        Again, just to be clear: I understand the necessary triage that must occur when dealing with patients on the donor organ waiting list. But that’s not an issue here, but you tried to make it so.

        • Anonymous

          The first step, before a patient is even on the transplant list, is to determine if the patient is a candidate for a transplant. From what is known about Amelia’s chromosomal disorder, chronic kidney failure is a likely side effect. Additionally, (as I’ve just learned) the medicines she would be prescribed for Wolf-Hirschhorn syndrome, are contra indicated with the immuno suppressants that are necessary to ensure a transplanted organ isn’t rejected.

          I am not saying that all patients with WH are automatically disqualified, but her doctors determined that based on her specific health status, she is not a candidate.

          This is being twisted into a “discriminate against the children with special needs” story, which it isn’t.

          Also, I completely disagree with medical decisions being made by social media. Amelia deserves the best care she can get, and it’s my opinion that her DOCTORS are most qualified to make those decisions, not vigilantes on a witch hunt.

          • ndh

            All that explains why kidney transplants have never been done on WH patients. Oh wait, they have? Nevermind. I do agree, though, social media should not be a factor. And it wouldn’t be: if CHOP hadn’t caved, which it looks like they’re doing, I am confident she would have been treated elsewhere by qualified doctors.

          • Anonymous

            Claiming that CHOP “caved” further demonstrates your ignorance & vigilantism. In the original blog post by Amelia’s mom, the doctor said the next step would be to have the transplant team reevaluate Amelia’s candidacy and get back to her. (According to her, the doctor was not changing his recommendation.)

      • Rebecca R.

        Yet that’s not the focus of your post. You give one short paragraph on why you think–admittedly someone with “no medical training” think–her complex medical needs and kidney complications make her an inappropriate candidate generally. Then you devote two whole paragraphs to the issue of the limited supply of organs available and the fact that she is competing against other–perhaps more appropriate candidate–for the same organ. It’s specious to now backtrack and say she wasn’t a candidate anyway. If she’s not a candidate for medical reasons, why not focus on that, instead of all the focus on the limited supply? The fact is that an inherent argument in your post is that Amelia’s candidacy for transplantation is in some way related to how she measures up against other potential candidates. Since that’s not really what’s going on here, why not admit as much? And if you want to get into the hard stuff, then why not consider whether brain damage or mental disability should ever be considered part of the equation, and if so, to what extent? Or consider an even touchier subject, which is whether another limited resource–money–should be expended to keep a child like Amelia alive? 

        Instead, your argument essentially goes like this: (1) Experts are the best ones to make this call, not emotional parents. (2) It’s a he-said, she-said situation, and I don’t trust the mom’s version of events. (3) This is a complex situation, and in my own non-expert opinion, I don’t think people with chronic kidney conditions should be getting transplants. [Btw, on a very general level--who do you think is getting them, people without kidney problems??] So the decision probably wasn’t based on her mental retardation, but on her bad health otherwise. (4) There are too many people who want kidneys and not enough to go around, so people like Amelia won’t always make the cut.

        As long as your own opinion on #3 is as non-medical as Amelia’s parents’ and as long as we know #4 doesn’t really apply, then why not admit as much and just leave it at numbers 1 and 2, and add an update to your argument acknowledging that the whole supply-demand issue is irrelevant here and actually has no bearing on whether she is a candidate to receive an organ? And while you’re at it, why not make even more clear that your whole argument #3 is more or less stating that you don’t think her MR was a reason for her ineligibility? Because that’s kind of what you imply, by not touching on the issue and only going into other elements of her disorder. Unless, of course, you want to be brave and touch on the issue of whether it should play into the decision–but then you might have to consider whether, in such a values-laden decision, the public’s morals might actually play a relevant role. 

      • R. R.

        Yet that’s not the focus of your post. You give one short paragraph on why you think–admittedly someone with “no medical training” think–her complex medical needs and kidney complications make her an inappropriate candidate generally. Then you devote two whole paragraphs to the issue of the limited supply of organs available and the fact that she is competing against other–perhaps more appropriate candidate–for the same organ. It’s specious to now backtrack and say she wasn’t a candidate anyway. If she’s not a candidate for medical reasons, why not focus on that, instead of all the focus on the limited supply? The fact is that an inherent argument in your post is that Amelia’s candidacy for transplantation is in some way related to how she measures up against other potential candidates. Since that’s not really what’s going on here, why not admit as much? And if you want to get into the hard stuff, then why not consider whether brain damage or mental disability should ever be considered part of the equation, and if so, to what extent? Or consider an even touchier subject, which is whether another limited resource–money–should be expended to keep a child like Amelia alive? 

        Instead, your argument essentially goes like this: (1) Experts are the best ones to make this call, not emotional parents. (2) It’s a he-said, she-said situation, and I don’t trust the mom’s version of events. (3) This is a complex situation, and in my own non-expert opinion, I don’t think people with chronic kidney conditions should be getting transplants. [Btw, on a very general level--who do you think is getting them, people without kidney problems??] So the decision probably wasn’t based on her mental retardation, but on her bad health otherwise. (4) There are too many people who want kidneys and not enough to go around, so people like Amelia won’t always make the cut.

        As long as your own opinion on #3 is as non-medical as Amelia’s parents’ and as long as we know #4 doesn’t really apply, then why not admit as much and just leave it at numbers 1 and 2, and add an update to your argument acknowledging that the whole supply-demand issue is irrelevant here and actually has no bearing on whether she is a candidate to receive an organ? And while you’re at it, why not make even more clear that your whole argument #3 is more or less stating that you don’t think her MR was a reason for her ineligibility? Because that’s kind of what you imply, by not touching on the issue and only going into other elements of her disorder. Unless, of course, you want to be brave and touch on the issue of whether it should play into the decision–but then you might have to consider whether, in such a values-laden decision, the public’s morals might actually play a relevant role. 

        • Anonymous

          1. Doctors should make medical decisions, not social media.

          2. Promoting organ donation is worthwhile.

          3. #TeamAmelia is on a witch hunt.

          4. It’s my blog, and I will address what I want to address.

          • ndh

            No. Doctors and patients or their guardians make medical decisions, together. Absent any finite resource limitations such as a true organ waiting list—a limitation that does not apply here—that formula should not change. Besides: I think we’d probably agree that there is at least one qualified doctor in this country who would agree to do the procedure. They’ve done a kidney transplant on a WH patient at Stanford, for instance. But hey, that’s an insignificant hospital with no intellectual credibility, so who knows.

          • Anonymous

            No matter how much a patient wants a procedure, if a DOCTOR won’t perform it, it won’t be done.

  • KC

    The reason this is getting so much attention is because CHOP denied the transplant based solely on “mental retardation” and not her genetic condition.  That was a major screw up that yes, the PR department, now has to remediate. It scared the hell out of everyone who has a special needs child with varying degrees of “intellectual disability” from Autism to Down’s Syndrome.

    • Anonymous

      All due respect, the mom — who must have been beside herself with confusion & hurt & emotions no mom should have to go thru — reported that “the dr said mental retardation.” I am not blaming the mom, nor do I think the mom maliciously put words in the Dr’s mouth. I am considering the possibility that the mom might have misheard the Dr, or accidentally paraphrased him. I am not going on a witch hunt for a doctor.

      • KC

        That may be the case, but still it was CHOP’s responsibility to handle this more sensitively and not let Mom leave confused and upset and left to blog it.  A lesson for all corporations of the power of the social media.

  • http://www.mommakiss.com/ MommaKiss

    Been reading about this little girl, and her story was on the cover of Yahoo today!

  • http://www.mommakiss.com/ MommaKiss

    Oh, and I’m an organ donor. And on the bone marrow registry, too – ya know, in case someone needs mine :)