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Terri Mauro

Hospital Denies Kidney Transplant to Girl With Intellectual Disability

By January 13, 2012

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No HeartOften, when we rail against the R-word, it's hard to get people to accept that belittling people with intellectual disabilities has repercussions, hard to make the case that turning a certain group of people into a joke dehumanizes them in a way that has a long and tragic history. People don't think they're doing that, they don't mean to do that, they don't see the harm.

Well, here's the harm: A little girl getting turned down for a kidney transplant, even with a family donor, because, as the doctor kept pointing out to her mother, she has mental retardation!

The girl's name is Amelia Rivera, she is thee years old, and like so many of us, her mother has a blog. In a post at wolfhirschhorn.org, Chrissy Rivera describes a massively upsetting meeting in which a doctor -- someone we expect to value life, to fight for it, someone we expect to have an absolutely up-to-the-minute understanding of human potential -- could not be made to understand that a child with an intellectual disability could possibly have a quality of life that warranted such a medical procedure. Could not be made to understand that her parents could value her life that much. Became angry at the very notion that anybody would want to fight for a child like this. And then had the nerve to claim that this was hard for him!

We spend a lot of time fighting for inclusion and respect for our kids. We like to believe that we're past the point of fighting for their right to be alive. Yet it seems unlikely that the Children's Hospital of Philadelphia is alone in its policy of setting an IQ level as a cut-off point for this kind of life-saving treatment. How can this be, now, in 2012? Aren't we past this?

If you'd like to give the hospital a piece of your mind, there's quite an angry mob forming on its Facebook page, so take up your torch and join in. There's also a petition up at Change.org demanding the hospital allow the transplant (and another seeking changes in transplant policies nationwide). Perhaps public-relations embarrassment will do what simple human decency could not.

I'll start a list here of blog posts on the story. If you've written one or seen one, share the link in the comments and I'll add it.

And something of a point/counterpoints from the Huffington Post:

UPDATE: Children's Hospital of Philadelphia has issued a lengthy, carefully worded statement on its Facebook page declaring in part that "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" (as Theresa confirms in the comments below). That of course does not deny that cognitive status may be one factor considered, or a major factor, or a factor without which other factors might become less important. Should it be a factor at all?

UPDATE 2: On Sunday night, the hospital added a new statement emphasizing the importance of the patient's family in making decisions and promising to "[take] 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."

UPDATE 3: On Monday, the hospital added the following to its earlier 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." The word "solely" is noticeably absent.

Also on Monday, the story began to get some pick-up by local and national media, and reports indicated that the hospital would be meeting with the family to discuss the transplant again. I'll add news stories about Amelia here as I find them:

UPDATE 4: On January 26, at around the time the Change.org petition went over 36,000 signatures, wolfhirschhorn.org issued a statement indicating that the Riveras have met with representatives of the Children's Hospital of Philadelphia about the situation that led to the blog post. It reads in part, "In addition to addressing Mia and the next steps with her transplant discussions, a few suggestions were made to CHOP about their involvement in a more macro view of awareness around transplant rights for the disabled, and public and medical community education around the 'mentally retarded' phrase. CHOP agreed to follow up and communicate their action items by the end of this week." Future updates are promised as progress is made. On January 30, a Philly.com report indicated that the hospital has not ruled out the procedure and had given the Riveras the information they had originally been hoping for on getting family members tested and preparing for a transplant. On February 3, the family posted a thank you message on wolfhirschhorn.org. More news stories on the progress in the case:

UPDATE 5: The Riveras and CHOP released a joint statement in which the hospital apologized for the terrible job of communication in that initial transplant meeting. Since this blog post has become unwieldy, I'm starting a new list in a new post for this latest development.

Comments
January 13, 2012 at 8:04 pm
(1) LMB - I have a Cognatively delayed child says:

Thank you for writing this. My heart breaks to think that there are other children that have been turned down with families that are left devastated with no where to turn for help.

January 13, 2012 at 8:08 pm
(2) Lynn says:

That truly disgusts me. Who does the doctor think he is, GOD!

January 13, 2012 at 8:30 pm
(3) gail says:

The doctor should be fired! If he isnt, his supervisors should be held accountable for keeping a monster like this in businesss. Our kids are valueable gifts from God. Every child deserves a chance to live. Who gave him the right to pick and chose who is smart enough to get an organ? besides, only God knows what the child will accomplish in life! I hurt for the pareents already worrying and going through hell, and then this monster judges their child. Makes me so mad. This world is losing all morals and values.

January 13, 2012 at 8:53 pm
(4) Nicki Pech says:

I think as well this ignoramous doctor should be fired, infact they should revoke his license to practice medicine. This man took a hypocratic oath to care for all sick people, regaurdless of their mental abilities. Exactly correct, who does HE believe he is? Has his education, blown his head up so much, that he believes, he can give the ability to sustain life, OR take it away??? This man should most assurily lose his license.

January 13, 2012 at 9:07 pm
(5) autumn says:

I can’t believe that the doctor turns this down on a child! All because of the disability! Ao what! Just do the job and let’s see if the doctor is wrong! Because doctors don’t always have the answers and I’m the proof of living! My mother had measles while I was in her tummy doctor suggest abortion because I would be deform! I don’t think so! Thank God my parents didn’t the doctors advice otherwise I wouldn’t be here! Well here we go again another doctor taking another childs life and again he can be wrong too! Freakin’ doctors! If you have a heart do something for that child! A life!

January 13, 2012 at 9:17 pm
(6) Linda says:

I have 2 sons both with autism – one has also been labelled developmentally delayed or what used to be called MR. Both of my sons are delayed. They are surviving triplets born 4 months premature – medical society saved them… now, if one of them required a transplant – that same society that saved their lives would tell me they aren’t worthy to LIVE! GIVE AMELIA her transplant – EVERY LIFE COUNTS! Every person has the right to live, and be respected! This is outrageous!

January 13, 2012 at 9:42 pm
(7) Theresa says:

Try getting the true story. First, my son was airlifted to CHOP at 8 weeks old, had many life saving procedures including 2 open hearts where he received human tissue, spent 2 months in the ICU. And guess what- he has Down Syndrome.The true story is that her immune system was going to reject the transplant.Many of the parents we met and are friends with have kids with DS who were treated and well. This is slander and I’d say be very careful about.com

January 13, 2012 at 9:45 pm
(8) KERI C says:

I found Dr Baluarte’s email address at the hospital and wrote him personally. Hope more choose to do just that. He has a facebook page, too ( Jorge Baluarte). I’m contemplating a private message to him.

A brief and polite but honest message sent his way couldnt hurt.

January 13, 2012 at 10:14 pm
(9) Amy says:

We’re nowhere near past the point of fighting for our children’s right be be alive. When 93% of parents who receive a prenatal diagnosis of Down syndrome choose to abort the child, our society is saying these children do NOT have a right to be alive. The fight has just begun.

January 13, 2012 at 11:13 pm
(10) specialchildren says:

That’s true, Amy. I had just kind of hoped we were past the point where the ones who were already alive were told to go away and die. We do have far to go.

Theresa, I’m very happy to hear that your son and other kids with Down syndrome have received good care from CHOP. If you have a source for the denial being due to her immune system, I’ll be happy to link to it. The only other side of the story I’ve seen has been CHOP’s generic statement on its Facebook page.

January 13, 2012 at 11:14 pm
(11) gina robinson says:

Unbelievable! A disgrace to the profession! I pray this family’s prayers are answered by a more compassionate doctor.

January 13, 2012 at 11:15 pm
(12) Jennifer Arnold says:

It is sickening!!! I have been a part of the health care profession & would like to ask this “doctor” why he even bothered taking the Hippocratic Oath! Whatever happened to do no harm & The Patients’ Bill of Rights? People like this should not be allowed to practice medicine and call themselves Doctors!!!!

January 13, 2012 at 11:19 pm
(13) stacey says:

Go to California to seek out Chester Koh, MD he saved Emily’s life he is at CHLA.. Good luck Mia has a rights just like everyone else

January 14, 2012 at 3:47 am
(14) Tom says:

Having the incredible luck to have had a kidney donor rejected by one Hospital (CMC in CLT) but given by another (WFUBMC in W/S) I can understand the Frustration of the bias in the system.

Each system of Hospitals has their own criteria to clear a transplant recipient. I was referred to WFUBMC by my kidney doc at CMC to WFUBMC because of a a problem with the “standards” that CMC had.

Bottom line was, The kidney (in my case and the one we are talking about) would not go to ANY ONE else. Yet the same standards apply. It would be different, sorry to say, if a kidney was pulled out of the general pool to support someone(even me) who did not provide the best chances for living a full life. As harsh as that sounds, it is really the only way to ration what is a rare commodity, an organ that has more people in need of that organ that there is a sup[ply.

In this case, the transplant MUST proceed. The kidney in question will not go to anyone else. Unfortunateluy, with the supply and demand, fair goes out the window, replaced by triage.

January 14, 2012 at 5:24 am
(15) Kelly says:

My son who was originally diagnosed with cerebral palsy, epilepsy, developmental delay, and speech disorder, went into liver failure due to Depakote (a seizure med) after taking it for 10 weeks when the doctor had highly suspected a mito-disease, yet prescribed him Depakote anyways and then did not use it with any precaution, was denied a liver transplant at Childrens Hospital of Orange County (CHOC) because he was found to have Alpers Disease. His liver failed from what they prescribed and then they refused absolutely refused to help my child in an way, because I could have been a “living donor” because they said that he was gong to die anyways. I said and so are you and so is everyone else in this world. My son passed away July 16, 2011 RIP Eman it is not fair they should have done everything that they could to save his life but they refused to.

January 14, 2012 at 10:02 am
(16) sue says:

Theresa, we are all waiting patiently. Where is your link to the “TRUE STORY” you have referred to? Were you there? Ameilia’s parents were there, and the doctor and social worker. I am actually relieved to hear your story of your experience at CHOP. I believe we are all happy that your child and you were both treated with compassion and the life saving remedies your child needed so desperately. And if you had been not treated that way, and you went public as a desperate, last ditch effort to save your child’s life, I believe the general public and all the mommies and daddies out there would have been behind you too. Every person out there has different experiences….and this one is horrific for the family. When you speak of the “true” story, you are inadvertantly calling these people liars….like it’s a conspiracy. I have nothing against CHOP yet. My problem is with this doctor, and SOCIAL worker, with no SOCIAL skills, who treated this family so wrongly. CHOP now has the option of making things right, or NOT. If they decide on NOT, then I will have a problem with the facility itself. I am not a doctor. I am not a lawyer, or a social worker. I have a more important job. I am a MOTHER, just like Mrs. R (Amelia’s mom). And if they find someone to do this surgery, and have a screening for candidates that match Amelia, I will be in line to be tested.

January 14, 2012 at 10:33 am
(17) jennifer boquist says:

She is a living human person. Despite her disabilities.

January 14, 2012 at 11:57 am
(18) sylrayj says:

When a hospital ‘warns’ its staff that the family actually likes their child and cares about her a great deal, red flags go up. When the doctor and social worker cite that Amelia will need care and ask who’s going to do that in 30 years when the parents are dead, what they’re really saying is, “Let’s kill her now through inaction and be done with the mess.”

Amelia’s parents would go to jail if they did not try to get medical help for their daughter. The doctors, however, despite having the tools at hand, are permitted and perhaps even encouraged to do the same thing.

I have seen people cite that Amelia will have a difficult time surviving the procedure, due to the anti-rejection medications. I have not seen that this was even mentioned to Amelia’s family, not even when the doctor and social worker ganged up on them to bray out that intellectual disabilities make it completely impossible for this kidney transplant. If they expect poor Amelia to die from the drugs instead of from kidney failure in no more than a year, then they have no cause to ask who’ll be there in 30 years to care for her.

January 14, 2012 at 12:21 pm
(19) Donna Thomson says:

I wrote about this terrible state of affairs at Children’s Hospital of Philadelphia on my blog this morning. See me post at http://donnathomson.blogspot.com. Thanks.

January 14, 2012 at 12:33 pm
(20) Donna Thomson says:

From an earlier blog post and relevant to Amelia:

Over the last year, I have observed a pernicious trend, and in 2012, I will be skating defensively toward it. Thanks to information technology, I have many friends all over the world who are also parents of children with disabilities. One family, from Australia, I have known ‘virtually’ for many years – their son has developmental disabilities, is medically complex and has managed to survive over 77 hospitalizations in his 23 years of life. This year, the professional advisory committee at their hospital took a unilateral decision that there would be no more ICU hospitalizations or resuscitation measures because these would ‘not be in the best interest of the patient’ and furthermore, they would be ‘futile’. It was my guess that a meeting of hospital administrators had taken place that basically placed a cap on the public funds that one individual could or should consume in a lifetime – especially if that individual had development disabilities. This is a story that I am hearing more and more from families the world over.

In November of this year, Louise Kinross, the editor of “Bloom”, the Holland Bloorview family magazine, attended a conference on medical ethics and disability at McGill. She reported that one neonatologist commented “There is a feeling among my colleagues – an unspoken and probably unconscious bias – between physical and mental disability. Sometimes neonatologists think if you’re not perfect mentally, you’re better off dead. But when it comes to physical disability, they will go a long way with interventions.” But also described at the McGill seminar was “The Disability Paradox” – that people with serious disabilities rate their lives as good or excellent while able-bodied people, particularly medical professionals, rate quality of life in people with disabilities as poor.

January 14, 2012 at 12:36 pm
(21) specialchildren says:

Thanks, Donna! I’ve added your post to the list.

sylrayj, that’s what I’ve thought too when I’ve seen people suggest other reasons for the denial. If the doctors want to sit down and discuss those things with the parents and make their recommendations, that’s certainly worth discussion, but “mental retardation” should be no part of that conversation. The thing that struck me about the story was that not only did the doctor see that as a good reason, but he was impatient that the parents didn’t. If the controversy over this story does nothing else, I hope it makes hospitals and doctors realize that parents are no longer isolated individuals who have to accept what they’re told. Social networking gives them the ability to make a very big stink.

January 14, 2012 at 2:29 pm
(22) Nacncy says:

I really think you should wait till all the facts come out, you are condemning a Dr., an entire team of Dr.s, and a Hospital on one persons account, to be fair the accused should have a chance to speak but Hippa laws prevent it. there are many many reason why a transplant wouldn’t work. If its true,that this was based on a mental disabilty only, its horrid, of course. I just find it hard to believe and sad that mob mentality takes over this fast, Please at least include the thought as you spread this that everyone should sign an organ donors card,because people die every day waiting for transplants, 18 a day in this country alone. . May God Bless all concerned about this dear sweet child Amelia.I pray that she does get the transplant.
Nancy

January 14, 2012 at 2:33 pm
(23) Lisa says:

What has happened when man thinks he can decide who should live and who should die? Regardless of any thoughts of what “may” happen in the future, no one knows but God. This person who calls himself a dr., should be relieved of his duties, obviously his call to politics is now greater than his call to help others. This story which I found tweeted by Patricia Heaton, has affected me greatly. This precious little girl, an angel sent by God, a gift to her family, is being treated as a lab experiment, CHOP should be ashamed. Although I highly regard this hospital, this will leave a stain on their reputation.

January 14, 2012 at 2:40 pm
(24) Cardiacmom says:

I hate to say it but it doesnt surprise me from CHOP! My daughter was treated by CHOP Cardiology since she was two days old, she was never symptomatic that we knew off. Then Spring 2011 she started complaining of chest pains, I called the cardiologist Dr. Davidson and he stated, “kids get chest pains all the time. Don’t worry about it I will see you next year.” Three weeks later she clutched her chest and collapsed. I called again and this time clearly aggrivated that I was wasting his time, “Kids grt their cues from their parents. As long as you tell her shes fine she will forget about it.” I took her to Dupont for a second opinion and she had open heart surgery 4 weeks later. She was 6 at the time and weighed 40 pounds and her left ventricle was enlarged to the size of a small adult. Chop is a Chop shop. Go to Dupont and get a real Doctor’s opinion. I dont know how they got to be ranked one of the top in the country.

January 14, 2012 at 3:25 pm
(25) debi9kids says:

Hi. Glad you are keeping a list. It’s good to spread the word. If it’s happening here, how many other places is it going on?
Just disgusting.

I saw a post written by a friend of Amelia’s mother:
http://www.alittlesomethingforme.com/2012/01/human-rights-going-viral-and-what-next.html

And this is my post I wrote after hearing about this yesterday: http://whosays8isenough.org/2012/01/13/i-am-beyond-sickened-by-this/

I am appalled.

January 14, 2012 at 3:56 pm
(26) specialchildren says:

Thanks for mentioning those, debi9kids. They’ve been added to the list.

January 14, 2012 at 4:42 pm
(27) Penny Putman says:

This is the link to the blog post that I wrote last night… And I will continue to post and fight for our children!!!

http://pennyspeeps.blogspot.com/2012/01/no-transplant-for-youif-you-have.html

January 14, 2012 at 4:51 pm
(28) Elise says:

I wrote a post at Raising Asperger’s Kids.

January 14, 2012 at 5:08 pm
(29) specialchildren says:

Thanks, Penny and Elise. I’ve added your links.

January 14, 2012 at 10:57 pm
(30) Ronda says:

Doctors are not God. God put this little girl on this earth for a reason and they should allow her to live her life.

January 15, 2012 at 9:19 am
(31) Sunday Stilwell says:

Please also add Susan Senator’s blog post to your list!

http://susansenator.com/blog/2012/01/amelias-kidney-our-heart/

January 15, 2012 at 9:42 am
(32) specialchildren says:

Got it! Thanks, Sunday.

January 15, 2012 at 1:14 pm
(33) Angel says:

http://www.singedwingangelspad.com/2012/01/who-defines-what-quality-of-life-is-and.html.
This whole thing just sickened me.. period. Especially since just last month I had to make the decision to have life support removed from my mom, because SHE would not have had a quality of life. The decision is hard enough when it warrants it, when it does not have to happen and is being forced because of other’s opinions it is wrong plain and simple.

January 15, 2012 at 1:26 pm
(34) specialchildren says:

Thanks for sharing your post, Angel. I’ve added it to the list.

January 15, 2012 at 1:38 pm
(35) Missy (@m0m23kidznKatz) says:

As a Corneal Transplant Recipient myself, and a friend of someone who’s teenage son was an Organ Donor, to learn of this monstrosity was an outrage. And it has MANY of my fellow transplant recipients (of ALL types!) beyond angry.

Being a blogger myself, I of course had to voice MY thoughts and opinion regarding this poor child’s “death sentence” at the hands of those that SWORE to “do no harm” and to SAVE lives, no matter WHAT that meant as a means to try to do so.

http://l00kingglassblog.blogspot.com/2012/01/dying-girl-denied-transplant-based.html

January 15, 2012 at 1:42 pm
(36) specialchildren says:

Thanks, Missy. I’ve added your post to the list.

January 15, 2012 at 1:54 pm
(37) Chester says:

Is it possible that the parents have not revealed the entire story. I have read several posts regarding this and there are several holes in the story. One is why is this family travelling from TN for care in PA?There are at least 20 hospitals that perform transplants closer to them. Also one post mentions that Amelia has a congenital heart defect as well. Could this be an issue? We are only reading what an emotional and passionate parent perceived. CHOP cannot comment on this specific case or it would be a HIPPA violation. Perhaps the entire story isn’t infront of us. It just does not seem completely realistic that her developmental issues are the only reason they would not perform the surgery. I don’t see in what way CHOP benefits from not doing this transplant when they treat some of the most complicated pediatric cases in the world as well as teach about them and research them. Why single out this one sweet little girl who they suggest is otherwise healthy. It does not add up.

January 15, 2012 at 2:03 pm
(38) Missy (@m0m23kidznKatz) says:

Chester, my parents were treated in this very same manner regarding me after my birth, and for weeks, if not months afterwards due to my severe medical issues.

They told my parents to institutionalize me, to never even get attached to me because I was “going to die anyways”, to not get used to my being here. And yes, in THOSE terms. I was just a piece of meat to them. I had NO “quality” of life to them.

But to my parents, it was a different ballgame. I was still a HUMAN BEING that indeed was WORTH saving. At all costs. With ANY measures deemed necessary.

Only one, maybe two doctors out of all the different specialists brought in for my care thought that I was savable. But more than that, I was a “perfect” so-called guinea-pig for a couple of newly developed surgical procedures and medical equipment for our time.

A social worker had been fired after she told my mom that it was in her best interest to walk out and NEVER come back, as to save her further heart ache because I was as good as dead.

A doctor had been put on thin ice for very much the same reason. He refused care to me because to him, I wasn’t worth the time and the effort.

So know this, things like this happen EVERY single day. But not all of our stories are able to blow the lid open on what most people that haven’t had the… “pleasure” of experiencing, as to open wide the eyes of the masses.

January 15, 2012 at 2:11 pm
(39) Chester says:

Missy,
I am sorry for you and your family and I am glad that everyone was wrong about you.
This story as the parents present it does not make sense to me. Just explain why it wasn’t easy enough to go to another hospital between TN and Philadelphia. Vanderbilt in in TN. Why isn’t this story on the news radar in Philadelphia?

January 15, 2012 at 2:17 pm
(40) Missy (@m0m23kidznKatz) says:

Very likely, it’s because of the rare disorder she has (Wolf-Hirschhorn Syndrome). Not all hospitals can help with all the same problems. So, she has to go where they DO specialize and have the proper tools to help her.

I was born at one hospital, then care-flighted to ANOTHER one (where they said too, I’d never survive the flight) for a life-saving, 18-hour procedure. Because my “home” hospital didn’t have the equipment, the doctors or the support staff, let alone the knowledge of what was wrong or how to properly care for and help me.

As for news media attention (national or local), no clue. Can’t tell you there. But does EVERYTHING in this world honestly have to clear “media level attention” to open people’s eye?

January 15, 2012 at 2:34 pm
(41) Terri Mauro says:

Chester, I believe the family is from central New Jersey, in the Philadelphia area. Where did you see that they were from Tennessee?

January 15, 2012 at 2:37 pm
(42) Sunday Stilwell says:

Chester- One fact I can clear up very easily is that Amelia’s family does NOT live in TN. They live in NJ and in such a location that travel to CHoP is not out of their way. Amelia has been seen at that hospital since her birth.

January 15, 2012 at 2:39 pm
(43) Chester says:

Missy,

Vanderbilt is a world class pediatric hospital on par with CHOP, as is Johns Hopkins in Baltimore, Texas Childrens, St Jude in Memphis, Wake Forest in NC, University of Kentucky, are just a few more world class hospitals that specialize and collaborate in pediatrics. They all do transplants too.

I just have too many questions to join the angry mob and attach myself to something that I cannot give full credibilty to.

January 15, 2012 at 2:43 pm
(44) Chester says:
January 15, 2012 at 2:52 pm
(45) specialchildren says:

Chester, the way it’s written is confusing, but I think if you look at that article again, it does not say that the Rivera family is from Tennessee. Examiner writers are local, and this particular writer’s beat is Nashville. She is reporting on a story that parents in Tennessee — her readers — have been talking about. It has Middle Tennessee parents angry, just as you’ll find parents in every state among those expressing anger. I believe she wrote it that way to bring it under the umbrella of her particular beat.

As Sunday states, though, Amelia Rivera’s family is from New Jersey, in an area that would make CHOP an obvious choice.

January 15, 2012 at 3:11 pm
(46) Chester says:

Ok then not from TN.
Why no local press? For someone who has been very involved in their childs care, how do you ony know the transplant dr as “Peruvian”, why no mention of other complicating factors like history of prior heart surgery? How does CHOP benefit from denying sugery to this one little girl when they treat the most complicated conditions. It is a teaching and research hospital. It would seem to me that this would be a case that would benefit them. CHOP isn’t in business to turn customers away. If they have known for some time that she would need a kidney transplant, how are they just finding out now that CHOP won’t do it? I realize this mothers pain comes from her heart but knowing that CHOP cannot defend itself and still protect Amelia’s privacy does not seem fair either.

January 15, 2012 at 3:32 pm
(47) specialchildren says:

Chester, I agree there are many unanswered questions, and I trust that the story will continue to develop. However, I think what I and many other parents are responding to — with, yes, emotion and maybe a bit of a mob mentality — is the fact that Amelia’s intellectual disability was a part of the conversation at all. As long as there is a form with “mental retardation” listed as a contraindication, as long as a doctor mentions that as a factor, we will have a problem with it, regardless of what other contraindications there may be.

I completely understand if you don’t want to join in until you have all the answers — that’s perfectly reasonable, and you are not at all alone in that feeling. But I have to say, after so many disheartening conversations about things like the R-word and inclusion and the rights of kids with disabilities, it is beyond thrilling to see pages after pages after pages after pages of comments on a hospital’s Facebook page declaring the value of individuals with intellectual disabilities. Sometimes it takes mass hysteria to get that going, but it is glorious to behold.

January 15, 2012 at 5:48 pm
(48) Jennifer says:

I wrote a post yesterday as well here: http://wadetoday.blogspot.com/2012/01/wow-justwow.html

My feeling is that even if there is “more to the story”, which I’m sure there is, the fact is “mental retardation” is being used as part of the criteria to deny a transplant. Part of CHOP’s response was, “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.” Why is “cognitive status” even part of the equation? I don’t have a problem with a list of criteria. It’s necessary. I just can’t fathom why “mental retardation” is one of them.

The “quality of life” issue is another sore spot for me. How dare anyone think they can judge this for someone else! Absolutely infuriating!

January 15, 2012 at 5:58 pm
(49) specialchildren says:

Thanks, Jennifer. I’ve added your post to the list.

January 15, 2012 at 7:32 pm
(50) Jenn says:

Here’s my blog entry about this… I don’t care what CHOP says…. sounds like a bunch of CYA crap to me. The fact that one of THEIR medical personnel said this TO A PARENT of said disabled child is INEXCUSABLE.

http://icanhasautism.blogspot.com/2012/01/hanging-my-head-in-disbelief-help.html

January 15, 2012 at 7:33 pm
(51) Manu Varma says:

http://transplantheadquarters.blogspot.com/2012/01/amelia-rivera.html

My post about this story and others that had similar experiences. It’s not the first time this has happened, but I’m hoping it’s the last time.

January 15, 2012 at 7:41 pm
(52) specialchildren says:

Jenn, I added yours to the list, thanks for mentioning it. (Love your blog name!)

Manu, I already had yours in there, and thank you for writing it. I really appreciated your perspective on this.

January 15, 2012 at 8:33 pm
(53) Sherry says:

Her family does in fact live in New Jersey [south jersey within 30 mins from CHOP] so my local news source says which is where I heard about it from. I think it is going to be world news within a few days. I dont have a child with a disability but if I did I’m sure I’d be a parent staff would be warned about. Im glad the family with a child with Downs syndrome was treated so well but that would I think be a whole different part of the hospital unless of course he was receiving a heart/lung transplant which she did not mention so I’m assuming not.Especially since a transplant was not noted and anyone who gets a transplant can reject if theydont take drugs to combat rejection. I have a friend whose husband received one two years ago…it was a very simple surgery and most of the medical concerns since have focused on whether it is being rejected. his blood is monitered often to check levels . Her condition with the kidneys I would think would be congenital due to fact she has a sydrome so a transplant would alleviate the issue with kidneys ….she would then be inthe same boat as ANYONE who has ever received a transplant rejection wise. I would putting myself in her shoes feel my childs life was worth any other childs\persons regardless of her IQ.

January 15, 2012 at 11:15 pm
(54) Ryan says:

If you all really care about this, check into how many transplanted have ever been done on children with down syndrome. There have been very few, like maybe as few as 10. While I may not agree with the doctor, he certainly didn’t do anything that hasn’t been done before. Most,I think, are probably never made aware they might Jenifer from a transplant. My point is going after this Dr and hospital may be a place to start, but change is going to take much more than that.

January 16, 2012 at 11:26 pm
(55) Kristi says:

I have a three year old son with Down Syndrome and I am a Pediatric Nurse. When I read this story a few days ago, I was appalled to say the least. Sadly, since that time, I have heard many other parents of children with Down Syndrome and other intellectual disabilities that have been faced with the same horrific reality – doctors and hospitals that denied their children transplants simply because of their mental retardation. It is unfathomable to me that this kind of thing is occurring in our country in 2012. If you are still taking submissions, I have written about this situation on my personal blog as well.
The Value of a Life: http://ohdudaday.blogspot.com/2012/01/value-of-life.html

January 17, 2012 at 3:22 am
(56) specialchildren says:

Thanks for sharing your post, Kristi. I’ve added it to the list.

January 17, 2012 at 9:02 am
(57) Rebekah says:

http://compatiblewithjoy-trisomy18.blogspot.com/2012/01/what-is-quality-of-life.html

I wrote this blog post on Saturday about Amelia. So glad it looks like discussion is opening up again. I just hope this particular doctor and social worker are removed from her case. I would be very uncomfortable with them working on my child after displaying such an atrocious attitude.

January 17, 2012 at 9:18 am
(58) specialchildren says:

Thanks, Rebekah, I added your link.

January 17, 2012 at 11:04 am
(59) Jessica says:

This infuriates me. I also added a comment to their FB page. How ideas like this still exist is beyond me…let alone the people carrying out those ideas. I posted my own article on this topic here:
http://www.jumpingwaves.com/2012/01/17/transplant-denied-because-of-intellectual-disability/

January 17, 2012 at 11:08 am
(60) specialchildren says:

Thanks, Jessica, I added yours to the list.

January 17, 2012 at 9:42 pm
(61) tracy says:

That is so sad, they do not have the right to deny any child, no matter what level iq they have :( shame on Chop!

January 18, 2012 at 6:32 am
(62) David Kpevai says:

I will help you pray for this child. If the doctor cannot do it, God almighty can do it for her.

January 18, 2012 at 11:13 am
(63) Katherine says:

People get turned down or waitlisted for transplants all the time. I know a child right now who can’t get a liver transplant because he is an illegal immigrant. There aren’t enough organs to go around and doctors and hospitals have the unenviable position of deciding who gets them.

January 18, 2012 at 8:39 pm
(64) specialchildren says:

That’s true, Katherine, and I sure don’t envy doctors who have to make those decisions every day. In this case, though, I think it’s worth noting that Amelia’s parents planned to find a donor among their friends and family members, and were not intending to put her on the list for that limited supply of organs.

January 23, 2012 at 11:23 am
(65) Kevin O'Brien says:

I am the owner of the wolfhirschhorn.org site and also a parent of a daughter with wolf-hirschhorn syndrome. With this story going viral, there has been an additional number of parents stepping up to tell about similar experiences and the lack of education in the medical community. However, this is not isolated to just doctors, nurses and medical practitioners. This is a deeply rooted issue that needs attention at a national level. We’re doing our best to see if CHOP can help make change. More to come with this.

January 23, 2012 at 11:32 am
(66) specialchildren says:

Can’t wait to see where this goes, Kevin. Please keep us posted, and thanks for all your good work on behalf of families with Wolf-Hirschhorn Syndrome.

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