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Mom: My Daughter Was Denied a Kidney Transplant Because She's Mentally Retarded

By joslyngray |

Parents of children with disabilities are up in arms after a three-year-old girl with Wolf-Hirschhorn Syndrome was denied a kidney transplant by the Children’s Hospital of Philadelphia.

Mom, Chrissy Rivera, wrote in a blog post that her daughter Amelia was denied the kidney transplant solely on the basis of Amelia’s mental retardation. Ms. Rivera’s family is prepared to donate a kidney, meaning that organ availability from the national donor list is a non-issue.

Ms. Rivera detailed a meeting she and her husband had with a CHOP social worker and physician on January 10, at CHOP’s Nephrology Department:

“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”

“Yes. This is hard for me, you know.”

My eyes burn through his soul as if I could set him on fire right there. “Ok, so now what? This is not acceptable to me. Who do I talk to next?”

“I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote.”

“And then who do I see?”

“Well, you can then take it the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won’t be done here.”

They both get up and leave the room.

Wolf-Hirschhorn Syndrome (WHS) is a rare genetic condition, occurring in approximately 1 in 50,000 births. Although the symptoms of Wolf-Hirschhorn Syndrome vary with individuals, all people with WHS have profound developmental delays. A 2001 study published in the Journal of Medical Genetics estimated that approximately 21 percent of children with WHS die before they reach the age of two, but many individuals with WHS live to adulthood.  The study showed that the person’s life expectancy depends significantly on how large a chromosomal deletion the patient has: for those with smaller deletions, the median survival rate is 34 years.  For those with larger deletions, the median survival rate is 18 years.

Ms. Rivera’s blog post circulated rapidly among the special needs blogger community, and soon a petition was started on Change.org, requesting that CHOP allow Amelia to receive a kidney transplant. Many parents of special needs children, and disability rights advocates, took to CHOP’s Facebook page to register their disgust, alleging that CHOP is practicing eugenics. Other parents, including those with mentally-impaired children, responded that CHOP has always given their children compassionate care. However, the outraged comments far outweighed the ones supporting CHOP.

According to U.S. News and World Report, Children’s Hospital of Philadelphia is tied for the number one spot as the “nation’s best children’s hospital.”  On their Facebook page, CHOP gave two statements. The first read, in part:

We want you to know that CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status. Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities and impairments.

The second statement said that:

We are also taking action to review all existing policies to make sure that they reflect the core values we live by, including our deep commitment to not discriminate in any way.

CHOP did not respond to Ms. Rivera’s statement that the nephrologist also said, “I have been warned about you. About how involved you and your family are with Amelia.”

The doctor also told Amelia’s parents that a kidney transplant would require Amelia to undergo a lifetime of daily medication, which can have serious side effects.  Ms. Rivera wrote in her blog post:

The social worker decides to join the conversation. “Well, you know a transplant is not forever. She will need another one in twelve years. And then what? And do you have any idea of the medications she will need to take to keep her healthy?”

I speak through gritted together. “YES, I HAVE DONE ALL MY RESEARCH.”

She smirks a little. “Well, what happens when she is thirty and neither of you are around to take care of her. What happens to her then? Who will make sure she takes her medications then?”

In a voice that mimics hers, I snort, “Well, what happens if you die tomorrow? Who will take care of your children? Your responsibilities at work?” She breathes in and her eyes widens. “Right!” I throw at her. “Neither of us can predict the future and we shouldn’t try. But if Amelia does not have this transplant she has no future!”

The doctor interrupts. He puts his hands up and tries to take a stern voice with me. “These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.”

“DO OTHER CHILDREN WHO HAVE A TRANSPLANT TAKE THIS MEDICATION?”

“Yes, but it is different for her. She is already brain damaged and mentally retarded.”

According to a 2006 study, people with mental retardation have as good, if not better, outcomes with organ transplants. One reason given us that those with developmental delays usually live in group home or other supervised settings, where any needed medications are carefully dispensed and monitored.

I spoke with Ashley Moore, a public relations representative at CHOP, who said that the hospital is prohibited by privacy laws from discussing specifics of Amelia’s case. I was sent an email later in the day from Dana Mortensen, another CHOP PR representative, with the following statement:

“The Children’s Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities. We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities. We at CHOP are deeply committed to providing the best possible medical care to all children, including those with any form of disability.”

Ms. Mortensen said she expected CHOP to release more information later this evening and over the coming week.

For an update on this story, please see Update: Hospital to Meet With Family of Girl Denied Kidney Transplant.

(Photo Credit: Jeffrey M. Vinocur)

You can read more from Joslyn at her blog, stark. raving. mad. mommy. You can also follow her on Facebook and on Twitter.

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About joslyngray

joslyngray

joslyngray

Joslyn Gray is the mother of four children with a variety of challenges ranging from allergies to ADHD to Asperger Syndrome. She writes candidly and comedically about this and her generally hectic life on her light-hearted personal blog, stark. raving. mad. mommy.. Read bio and latest posts → Read joslyngray's latest posts →

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42 thoughts on “Mom: My Daughter Was Denied a Kidney Transplant Because She's Mentally Retarded

  1. Shandeigh says:

    That is horrible. Unfortunately it’s going to become all too common the more we get into socialized medicine.

  2. Adrienne says:

    Do not mess with the special needs parenting community. We are a force. Thanks, Joslyn, for putting this story in front of even more people.

  3. Dana says:

    Shandeigh, this has nothing to do with socialized medicine. We have been practicing eugenics for so long in the United States that WE inspired ADOLF HITLER’s practices in Nazi Germany. True story. Look it up.

    There’s no reason to deny a child a kidney transplant under *any* system if the kidney’s being donated by the family. And I might point out that under *this* system we give alcoholics who are famous baseball players a liver transplant even though there are little kids dying on the waiting list. And that is NOT under socialized medicine. Stick THAT in your pipe and smoke it.

  4. Diera says:

    @Shandeigh: a) how does this apply here, since the issue was in no way related to who would pay for the transplant? b) how is the situation wherein for-profit institutions are motivated to deny care to covered individuals based on their mandate to make a profit for their shareholders preferable?

  5. Mindy says:

    Sounds to me like that you have a law suit and that is just so wrong and uncivil and very unjust but prayers are still out to the family

  6. Diera says:

    Well, in all fairness, I think there might be *some* reasons to deny a kidney transplant even if the family wanted to provide it. If the person to receive the kidney only had a prognosis of less than six months to live independent of the kidney issue, or if the patient was so medically delicate that the transplant procedure carried a high risk of killing the patient outright, I can see how a physician might feel unable ethically to do a transplant even if the family had their own kidney and all the money in the world. That doesn’t appear to have been the case here though.

  7. Luna says:

    Shandeigh: Um, this has nothing to do with socialized medicine. At all. This is a for-profit hospital deciding that the child’s life isn’t worth saving. I live in a country with socialized medicine. You really don’t know what you’re talking about. Fox News is lying to you. I’m sorry, but they are.

  8. Jackie says:

    I hope we are missing some information on this case because for an ethics committee to deny a transplant based on intellectual status is appalling. Sounds like the ethics committee needs a course in ethics. I’m from Canada, and our “socialized medicine” does not cause the vulnerable members of our society to be discriminated against. I would argue that it allows for more equal treatment.

  9. lam says:

    I don’t see where they are saying the child’s life isn’t worth saving. They just don’t want to do the transplant. Maybe her condition makes her a poor candidate in some way. Maybe they think her quality of life is so bad they don’t want to go to extreme measures to prolong it. Maybe they think the donor is unsuitable or the risk is too great. More data would be better than quick vilification of the child’s doctors.

  10. goddess says:

    “profound developmental delays”
    Been there, done that, bought the t shirt.
    I see no reason why typical people should be placed below people with PROFOUND developmental delays on the list. Whatsoever. Coming from a parent who had a child with profound developmental delays. And his father and brother, sister and grandmother all concur.

  11. Sara says:

    This isn’t a child with just an intellectual disability. She has a medical condition that has a significantly lower life span. If there were enough kidneys for everyone then the choice would be simple but that’s not the case. There are not enough kidneys so therefore the organs need to go to the patients who have the best chance long term medically.

  12. littlefrogs says:

    Why will she need repeated transplants?

  13. Jen says:

    I don’t know exactly why she’ll need repeated kidney transplants. This site (http://www.barnesjewish.org/transplant/kidney-transplant/recipient-FAQ#20) says: “Living donor transplants last on average for 15-20 years and deceased donor transplants last for 10-15 years.”

    I’m the mom of a preschooler on the list for a liver transplant. I can’t stop thinking about this story. And I feel sick about it.

  14. Hollie says:

    I know that UNOS has their own criteria for parceling out organs for transplant, and while it will ALWAYS seem unfair to people who are denied organs and will die without them, there have to be some criteria to judge who will get them. I know that that word, “judge”, makes everyone jump to their feet and scream “Who!? Who should judge?!” but someone has to. And the medical professionals are the ones who have to do it, and most of them probably hate their jobs and cry buckets over their decisions. That doesn’t mean that it doesn’t have to be done.

  15. Diera says:

    For everyone who’s talking about her position on ‘the list’ and how organs get parceled out and whether or not those with low predicted life expectancies should not get a place on the list; you might have a point, except that she’s not on the list. She’s getting a kidney from her own family members. How she should rank in relation to others who also need a kidney is not the question here, because any kidney she gets will have been donated directly to her.

  16. Catherine Jariett says:

    After reading the comments posted, I have summarized a few comments. I am a 52 year old grandmother with two children. I have a working relationship with several “developmentally challenged” individuals. In Canada we are not allowed to refer to the term “retarded or mentally retarded” (politically). I have a problem with using this reason alone. There are many “challenged” individuals that have expected life spans of upward past 50 years. Given a stable bill of health to survive surgery and positive prognosis when it is successful, I really find this hard to believe that this is being refused. Many challenged people are employed in the workforce. From what I read, I am really confused how a case like this could be turned down for the specific reason that the individual is “retarded”. That is a definate human rights issue and although I have no experience in that field, will monitor your situation in the case I can offer any ideas.

  17. Maggie says:

    It’s totally predictable that the hospital’s attorney would tell the hospital to state categorically that of course they would never refuse a transplant on the basis of cognitive disability.

    But probably the reading public won’t start to believe that until the doctor is sharply disciplined for his comments to the parents. Not only was his quoted speech entirely indicative of eugenics and discrimination on the basis of mental disability, but his statement that he had been ‘warned’ about how involved the parents are with their daughter speaks volumes. A doctor who thinks parental involvement is a problem has no business treating children.

  18. CJ says:

    Sad story all the way around, however, the angry mom ought to find another doctor and hospital willing to do the surgeries and pay them instead. I agree with a previous commenter who said someone has to “judge” when and who gets transplants, and even though the young mentally retarded child of this story presents a sympathetic, grab-a-tissue-and-cry response from the community, the reality is that doctors and parents and patients make “judgements” all the time, whether it is to get to a doctor in the first place, follow or not follow a course of treatment offered, secure a second opinion to bolster or shoot down a diagnosis, shop around for a doctor that charges more or charges less… the list goes on and on.

    If the family has the (spare) kidney, has the money or insurance coverage, and has the desire to force continued life to their severely mentally retarded child who may already have a seriously short life span expectancy due to preexisting disease, then they should take advantage of our capitalistic structure of medical treatment delivery system and pay another doctor and hospital to do what they want done. CHOP surely isn’t the only hospital that does kidney transplants, right?

  19. CJ says:

    As a side note, would the parents or the community be so upset about a decision in which the doctor and hospital were demanding the transplant take place (force the donation of the kidney from the family member), yet parental choice determined surgery unacceptable treatment for the child? No, community would be accepting of the parents’ choice and denigrating the doctor or hospital for all sorts of reasons (i.e.; experimenting, prolonging the undesirable quality of life, etc.)

  20. goddess says:

    Well that does change things Diera. Thanks for pointing that out. I had overlooked that point. Yeah- if her family chooses to donate it,and they have the funds/insurance to cover it, I don’t see why she should be denied.

  21. Abby says:

    Absolutely disgusting. There are no other words.

  22. Breeze says:

    Luna, you are so right. I can’t help but feel sorry for all you poor Americans who have been taken in by that “socialized medicine” fairytale.
    Here in Australia we have had socialized medicine for forty years, and this situation would never happen. Hospitals don’t have committees that decide whether your child gets to receive the organ your family member has donated.
    Here, people don’t die of treatable cancer because they don’t have insurance. Everyone can have prenatal care. If you break your arm you’ll never have to sell your car to pay for it. There are no death committees switching people off. That’s up to families to decide with the help of doctors.
    Our health care system is better in quality, fairer and it costs far less directly and for taxpayers. If that’s the evil bogeyman of socialized medicine and you think it’s so terrible, you don’t deserve socialized medicine!

  23. Sunday Stilwell says:

    Hello all! Thank you for your tireless support of #TeamAmelia. I wanted to clarify a few points:

    #1) Amelia is 3 years old and will be turning 4 in March 2012.

    #2) CHOP has NOT overturned their original decision to not do the transplant

    #3) Chrissy and Joe Rivera are still waiting for a call back from CHOP about scheduling an appointment with the Transplant team. Some are reporting that they are meeting with the doctors today. They are not.

    Thank you!

  24. Lorette Lavine says:

    I have worked with ESRD (End Stage Renal Disease) patients for a number of years at a teaching hospital…this story is compelling but I do not feel there is full disclosure here and therefore the outrage at current medical care may not be well directed.
    Much more information is necessary in this case and any other case of transplant denial to make an intelligent comment.
    If the verbatim discussion is accurate here, the professionals in this case lack an awful lot when it comes to patient care and discussion.
    I hope more information becomes available on both sides of this story.

  25. Zinnchick says:

    I took the time to read some of Chrissy’s other blogs and diaries. She refers to the doctor (the nephrologist) in rather “looking-down-my-nose” terms, and I can see that IF the doctor did say something about being “warned about her”, he probably was. She went into the meeting about the transplant “loaded for bear”, meaning that she was just looking for something to be offended by. In an interview given to a blog earlier, she opined that doctors had been wrong with their options for care, and that sometimes she “caught it’ and sometimes she didn’t. When asked if she had made arrangements for the possible time when the parents might not be around, she said she hadn’t, and she knew “itwas wrong”; I would suggest that anyone go and look at the wonderful pictures of Amelia. She is tiny, but very cute and has blue eyes that’ll take any of us in…http://www.wolfhirschhorn.org/category/mia-rose/ Also, it is well to note that as of the last blog note, there was NO eligible donor for Mia. Chrissy simply states that the family is large, and that there will no doubt be a donor for Mia if she and her husband and children are not matches. I’m sorry,but I’m not sure I’d do the transplant if I were a nephrologist. But then, I’m not…….

  26. Lilmouse says:

    Diera, the way I understood the article (and I don’t think it was entirely clear), the girl is getting a donor organ, not one of the family member’s organs. The family is willing to step up to donate one to the system to “replace” the one their daughter would take.

  27. Michelle says:

    I am saddened for this family and what they have to go through, however, one thing needs to be looked at. I feel that we are not getting the entire story here and what a lot of people fail to realize is that this disease should have taken this little girl almost 2 years ago. She should NOT be here, and if she is, her life span is short. I don’t know all of the logistics of this case, nor have I ever been in a situation where a transplant is needed, but it sounds like the proverbial case of giving the liver to the drunkard. This little girl apparent will need repeat cases and the last time I looked, vital organs are not easy to come by. I admire the gumption of these parents willing to do whatever it takes for their child, but at what cost? If this little girl survives the first transplant and already has cognitive issues, she then goes onto a medication that can make the issues even worse? What kind of a life is that going to be for her? Sole care taker of a woman who needs thousands upon thousands of dollars in medication every day just to turn around and 1) either reject the organ or 2) need another one in several years to turn around and succumb to the disease again? I know it’s hard and you want to fight the good fight, but maybe it’s God’s way of saying, let her come home. Now, if what they are saying is true and it is SOLEY based on her mental condition, then yes.. the ethics board needs to be shot and buried. But I feel that there is more to this story than what is being said.

  28. CW says:

    This is one more example of how our modern society is so thoroughly enmeshed in the “culture of death”. When we as a society do not cherish life from the moment of conception through natural death, this is where things inevitably lead. I just pray that things do not get worse…

  29. goddess says:

    Well, CW, I hope to never have to “cherish” another loved one’s life afflicted by Alzheimer’s. And I sure hope that mercy, respect, logic and dignity prevail and permit me and mine (and other like-minded individuals) to create Advanced Directives for Assisted suicide under specific criteria like Alzheimer’s Disease and other, some fatal, diseases and conditions. Goddess SAVE me from the type of “cherishing” that demands I survive in shell with no mind, heart or soul left!

  30. Daisy says:

    From a Drs point of view.
    1. Annastesia to perform the surgery isa risk and with defects and damage to the brain its an even greater risk and at 2 it could potentially kill the child.
    2. The medication involved may be adminiaterd properly and watched carefully but if that child has problems that will eventually kill that child with or without that kidney they are already a non viable cannidate and will not be put on the waiting list.
    3. if that child were to die on the operating table because of this surgery it could be considered mal practices. After that i can pretty much guarentee that parent will sue the Dr and the Dr will loose.
    4. That operation takes time, doctors and valuble resources that could be used on someone that would most likely survive the surgury. A drs oath before they even recieve their licence is -Do no harm- They will not perform any surgery that could endanger the health of the patient.
    - I know you probably dont like that anwser. But that is exactly what thoes doctors are thinking. The best they could do for the child without potentially killing her is putting her on diallasis.

  31. Linda, t.o.o. says:

    This is such a sad story, yet I’m uncomfortable with the way it’s being reported because it’s all so one sided. The parents can say whatever they want and the hospital can’t even refute blatantly untrue things because that would amount to them breaking privilege.

  32. Sanriobaby =^.^= says:

    I’m very disappointed that this happend at CHOP, since it’s reputation is so widely respected. I feel so bad for this family and in my heart, this child should get the transplant. If her medical insurance covers it and the kidney is being given to her by another family member then what’s the real issue? Is it based on her rare disease which would disqualifiy her, then I might understand. But if what the mother is saying is true and the hospital is denying her solely based on her reduced mental capacity, then do they deny others soley based on that too. If so, then that’s against the law and I hope she lawyers up very quickly. I also hope this story gets out to larger media sources, especially the morning news shows such as GMA b/c the media pressure and public outrage may get them to have a change of heart. Time truly is of the essence here and I hope this child lives long enough to get her transplant.

  33. Diera says:

    @Lilmouse, here’s the quote from the mom’s blog:

    “Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”

    That seems clear; if the parents aren’t a match, they come from a large family and someone will donate. They won’t be on a recipients list.

  34. Mary says:

    That story seems unlikely. Really, a team of doctors and social workers throwing around the word retard? It’s more likely they denied her because her disability has shortened her life expectancy. Poor baby.

  35. April says:

    As long as a family member is a match and the surgery will benefit the little girl’s health, then what business is it of anyone else. Doctors run a business. If they have the money to pay for the transplant, they should be willing to take it. It is not like the family member is going to give an organ to someone else instead. They want to give it to her! Let them! I can do whatever the hell I want with my organs and if that includes giving it to a little girl that has disabilities, so be it.

  36. Shelley says:

    This little girl has a chromosomal disorder that causes more physical issues than physical retardation, and medical privacy laws prevent the hospital from discussing these. I have a lot of sympathy for the parents and family — this is a tragic situation — but get the distinct sense that there may be more to the story from the medical point of view than has been reported.

  37. steen says:

    This is a completely one sided story and I’m certain there is more going on than the writer is letting on. It’s heartbreaking to watch a child suffer, but maybe this is the doctors way of saying “nothing can save your child so enjoy the time you have”. Get all the info before you start passing judgement.
    In addition to this, I have my own opinion, and it won’t be agreed upon by many, but I like to think I’m a realist…so here goes: Lets say the child was on the list and you were right behind said child on said list. If I knew that the child had severe mental and physical disabilities and their life expectancy, with or without the organ, was extremely limited, I would be pissed. I know that sounds cruel, but I’m a healthy 36 year old woman with two children and a husband I’m completely in love with. Put yourself in that position and really think about how you’d really feel deep deep down in your being.

  38. joslyngray says:

    A few responses from the writer of this post:
    – I agree with everyone who has pointed out that the story is terribly one-sided. I’m saddened that CHOP can’t legally respond. However, I feel that the alternative–not reporting it all–would be worse.
    –Yes, doctors do use the term “mentally retarded.” At no point did anyone ever use the term “retard,” however. They are two completely different terms. The term “mentally retarded” is still in use, although many prefer “cognitively impaired” or “intellectually disabled.” However, I can tell you from my own experience that from an insurance company or diagnostic point of view, the term “mentally retarded” is very much in use.
    –I just want to thank everyone for their thoughtful, respectful comments. As so many people have pointed out, whatever the full story is, it’s a tragic situation all around.

  39. Terri says:

    Since when did the doctors become ‘God’ judge and jury I thought they took some kind of OATH that they are to treat everyone! I feel for tha family but there has got to be someone out there willing to do the transplant.

  40. b rogers says:

    anyone who has a concern about socialized medicine should go to www.
    ellesmereportpioneer.com.uk and read the story about Finn Kinsella of
    Ellesmere Port Cheshire. UK. Would this happen today in the US.

  41. Lois says:

    Transplants shouldn’t be paid for by Medicaid or Medicare, period.

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