Print Print

Claim: Girl Denied Transplant Because She’s ‘Mentally Retarded’

By

Text Size  A  A

A Philadelphia hospital is taking heat after reportedly telling one mom her daughter would not be able to receive a kidney transplant because the 3-year-old has an intellectual disability.

Chrissy Rivera wrote about her daughter’s experience at Children’s Hospital of Philadelphia in a blog post last week. Since then, more than 18,000 people have signed an online petition calling for the hospital to reverse course.

Rivera’s daughter, Amelia, has Wolf-Hirschhorn syndrome, a chromosomal disorder affecting about 1 in 50,000 people that’s marked by the presence of intellectual disability, developmental delay, seizures and distinct facial characteristics.

In the posting, Rivera wrote that a doctor told her that the children’s hospital would not perform a much-needed kidney transplant because Amelia is “mentally retarded.” The doctor emphasized concerns about the girl’s quality of life given her limited cognitive abilities, according to Rivera’s account.

Rivera wrote that she protested, arguing that Amelia would likely die in six months to a year without the operation, but was unable to change the doctor’s mind.

“We are in the year 2012 and my child still does not have the right to live, the right to a transplant, because she is developmentally delayed,” Rivera wrote.

Officials at Children’s Hospital of Philadelphia said they could not speak to the Riveras’ experience specifically due to privacy laws. However, in a statement they said that they do not discriminate based on disability.

“The Children’s Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities,” the hospital’s statement said. “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.”

Now, it appears that the hospital — which got an earful on its Facebook page — may be changing course. USA Today reports that the Riveras have been asked to come back to the hospital to talk about a transplant.

It is unclear how common situations like the Riveras’ are. But a 2006 study from Ohio State University looking at the success of kidney transplants in those with intellectual disabilities found that survival rates were similar to those of transplant recipients with typical cognitive abilities.

More in Health & Behavior »

Search Jobs

Post a Comment

Disability Scoop welcomes comments, but all submissions are moderated and will not appear until they are approved. Please keep your remarks brief and refrain from inserting links. In order to maintain a respectful dialogue, comments that are promotional, off-topic, unoriginal or those that contain offensive language or make personal attacks will not be published.

Comments (28 Responses)

  1. barb williams says:

    not right!!!!!!!!!!!!!

  2. Christine says:

    Wow! I truly thought that as a society we had come much farther than this!! What is wrong with a doctor who would say something so horrendous but also a hospital standing behind the situation! The fact is this is a 3 yr old who would need moms permission! In my work everyday I look at the people I work with and my thought is “what would I do if I or someone I cared for had these issues or had to deal with these things, how would I handle the situation”. Everyone needs to think along these lines! This little girl may have ID but she is a person and deserves the same respect if not more because she is a fighter and a survivor!!

  3. hdemic says:

    whats interesting is if they do not get the transplant the parents would probley be charged with “medical neglect” Have all the best wishes for you.
    mother of a disabled child

  4. Julie says:

    I am having such a hard time with this. My son has been treated since he was a baby at CHOP. They are amazing. I don’t believe we are hearing the entire story. I know that CHOP has reached out to the parents to discuss the situation but beyond that… CHOP’s hands are tied. They cannot disclose their side to the public without violating the patient/doctor priviledge. I hope CHOP resolves this quickly to the parents’ satisfaction. Not because of the public pressure but because it’s the right thing to do.

  5. Cindy White says:

    I can’t believe in 2012 we are still living in a society where this kind of prejudice still exists. Are we going the way of eugenics??!! My best wishes and prayers for the Rivera family. For the physicians involved, do these words look familiar?? ” I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.”

  6. Marc Carter says:

    You should read the Lisa Belkin – Susan Senator debate on the Huffington Post. Very interesting and well reasoned on both sides of the issue.

    http://www.huffingtonpost.com/lisa-belkin/denying-transplant_b_1207630.html

    http://www.huffingtonpost.com/susan-senator/kidney-transplant_b_1208540.html

  7. Robin says:

    My daughter has an intellectual disabilty too, but she is an actor on one of the most popular TV shows, she is a Presidential appointee, sits on international Boards, speaks out around the country on important issues, and inspires people with and without disabilities around the world! I’m sure the hospital is looking at this as a financial issue, but it is so much more than that! Who are they to say what the “quality” of this little girl’s life will be? I am amazed every day of my life what my daughter has accomplished and continues to accomplish!

  8. susan kellar says:

    Frist of all thought the words mentally retarded was gone .I see the words are being used here.I get quiet mad just see n this lanuague.as far as a transplant I`m think n we can not say who will get a organ and who will not being on person has specials needs..This make me think harder .I`m an organ donate.I pray that this Hospital will do some harder think n and maybe fire this dr.

  9. Savannah Logsdon-Breakstone says:

    One this that you didn’t mention that is ESSENTIAL to this case- they weren’t getting her kidney from the transplant list. A family donor was found and willing to go through with this. This NEGATES the entire candidate for procedure issue, where because of a limited supply of organs candidates are chosen based on additional criteria.

    The problem was that the doctor on the case didn’t want to go through with it.

    The reason CHOP is in trouble is because they allowed a doctor with this attitude to represent their hospital and to speak for the hospital. If the Rivera’s get a positive outcome, then it becomes more obvious that CHOP’s only mistake was not realizing they had a bigot on staff. Said doctor will probably have to attend, along with others, trainings on the issue so that it doesn’t become a systemic issue with the hospital. If so, the fact that xyz individuals have had positive experiences there

  10. mary says:

    Amelia,if i could i would give you the biggest cuddle you keep in their and keep fighting little one love to u and your family you are all in my thoughts and i hope the hospital comes to their senses

  11. Patricia Sabat says:

    Shame, shame, shame! I couldn’t believe what I was reading!
    As the mom of a mentally impaired daughter with heart issues, I
    am outraged and saddened–and now I have something else to add to
    my list* of things to worry about “what happens to Tricia when
    I go up north*.”

    Pat Sabat
    Member, ARC Downriver, Wyandotte MI
    PS I bet if the Rivera’s were celebrities, this would have played out
    differently–

  12. Bayberry says:

    We aren’t hearing the whole story. This child was denied a place on the waiting list due to multiple medical problems that made her a poor candidate for a transplant. The mother has contradicted herself, first saying that the child was denied a place on the waiting list, then claiming they never wanted that. CHoP is prevented by privacy laws from giving the rest of the story. Now there’s a claim that the kidney donor would be from the family – but that’s not a given, as the mother seems to believe. Sad fact is that even if a family member is a match, and the transplant is done, it will not give this child the length of life that her mother wants.

  13. Daily Woman says:

    This is a sad sad story but I do know this I dont think I would allow that hospital or Dr to do the surgery.

  14. Denise Shoaf says:

    human rights are universal not subjective

  15. vmgillen says:

    This “quality of life” issue was raised when my daughter (Dx: Downs) needed heart surgery… it is absolutely infuriating – and an example of what I’ve called able-bodied NT colonial imperialism.

  16. Reality says:

    Let’s think realistically. there is a waiting list for organ transplants everyday, it’s a rarity. Why give a vital organ to a child that’s cant talk, suffers seizures and mental Retardation when there are millions of Perfectly healthy people that will contribute to society. It may be cruel and harsh but sometimes it’s best to let go. My prayers go out to all those still waiting for that transplant. donate your organs!

  17. Wendy says:

    Reading this family’s experiences, and knowing how these parents are fighting for their child’s life, has opened old wounds for me. Some 27 yrs. ago, I gave birth to a son. Diagnosed with Down Syndrome, and born with congestive heart failure. CHOP’s, cardiologist, once explained to me, that some services would not be performed; because he would never be a productive citizen of society, due to his diagnoses.
    Because I fought hard and diligently, he did receive two (2) open-heart surgeries, and today leaves a very busy and active life. To know that this stigma, toward the special needs population still exists, today 27 yrs. later saddens me. I will pray for you and your family, and know that God is on your side. “There is no love greater than a mothers love.”

  18. Michele says:

    To REALITY: You are the one who should get a grip on reality. Saying that someone with developmental disabilities is incapable of “contributing to society” is pretty messed up. I am counselor for individuals with developmental disabilities. If you continue to be so ignorant in your views, you will never be allowed to experience just how much someone with disabilities can (and do) contribute to society. I learn something new (about my patients and myself) on a daily basis. Open up your heart and let some goodness in. You might be surprised at where that takes you in life.

  19. Karin says:

    How sad and disgusting that, in our society, these decisions come down to two factors: intelligence and societal productivity.

    Should we administer IQ tests to all on organ waiting lists? (which, by the way, this child was not. her parents were going to give her the organ, if you bothered to read the original article).

    Should we have potential organ recipients perform work-related tasks to see how they will be able to “pay back” their due after they get the precious body part you’ve so generously donated to them when you’ve checked “yes” on your driver’s license application?

    And, who’s more worthy of said organ? Donald Trump, because he has more money? Or…me, because I’ve worked with developmentally disabled individuals all my life?

    If the answer is me, I’ll pass mine on to the little girl. She’s got her whole life to live.

  20. Valerie Strohl says:

    First of all, the acronym used by the hospital (CHOP) says a lot. Secondly, we will continue to see more of this with the direction our country has chosen to pursue health care. If you only have a certain amount of money to work with, these kinds of situations will only continue to rise.

  21. Jeannine says:

    My son, who has Down Syndrome, was born at CHOP last year. After discovering that he had a congenital heart defect at our 20 week ultrasound, I was evaluated by the doctors in CHOP’s Center for Fetal Diagnosis and Treatment and followed by those doctors for several months. My son was in the NICU at CHOP for several days after he was born, and returned when he was 3 months old for open heart surgery. Since then, we’ve been back to CHOP for appointments with doctors in cardiology, hematology, opthalmology and audiology as well as their Trisomy 21 program.

    CHOP has consistently treated my son and our entire family with the utmost respect. The doctors and staff at CHOP have always made us feel as if my son is their most important patient, even though I know they have many other children with more serious health conditions to care for. They helped us find resources to learn about Down Syndrome and access early intervention services both before and after my son was born. They respected our decisions with regard to everything from declining certain prenatal tests, to nursing my son as soon as I could after he was born, to delaying blood work when my son was uncomfortable after his heart surgery. They’ve rearranged appointments with multiple departments for us so that we could schedule multiple doctor visits in one day. The last time we were there for a visit, a doctor who recognized us from our time in the cardiac care unit stopped to talk to us to see how my son was doing. I just can’t say enough about the excellent services we received at CHOP.

    The Riveras’ story of their experience at CHOP is shocking to me and so unlike anything we experienced during our any of our visits or stays at CHOP. I sincerely hope Amelia gets the medical services she needs. However, I also hope this incident does not take away from the great work of the hospital and the vast majority of its doctors and staff.

  22. Maddie says:

    Not right… Why is it that disabled people usually get the short end of the stick in these types of situations? Would they refuse to give someone like my little sister a life-saving blood transfusion or other operation because she has a brain injury? Do they not deserve to live like all the other Pre-schoolers and 3rd graders because of forces they can’t control?!

  23. Jamar Cherry says:

    If any doctor discriminates a person from not having surgery because they have a mental dely should be fired. Because what if that doctor was in that person’s shoes and want to have any kind of surgery and that doctor told him/her that they can’t do it because he or she has MR. I think the doctor is an idiot he should be diagnose as MR. If he only looked it up in the dictionary to see what Retarded really means. He is worthless. I have a disability also, i wish he would come and said that to me i would tell him off.

  24. Julie says:

    @Valerie Strohl – are you serious? Have you ever been to CHOP? Are you aware of their reputation? Do you know how many children’s lives have been saved at that hospital? A DOCTOR – not the entire hospital made a judgment call. We have absolutely no way of knowing why – only the parents can speak about it – the hospital’s hands are tied because of HIPPA. IF this doctor did say the reason he wouldn’t do the surgery is because of her mental capabilities, then he should be fired. The entire hospital should not be vilified because of one employees actions.

  25. wolfhirschhorn.org says:

    Thank you for recognizing our story. More to come with this.

  26. Deonne says:

    This is a true disgrace prejudices like this are one of the worst in our society, and they need to be stoped. We live in the 21st century where everyone needs to be given the opportunity to live, everyone. This little girl has the potential to live a full and happy life and for a doctor or a hospital to denie her of that gift, that is sickening.

  27. Joyce Cleary says:

    Hi,I am so deeply sympathized hpw innocent-human beautiful ID child is agonized not to be accepted kidney transplant due to discrimination. That’s not fair ! Any disability is children is no difference on the earth.

  28. Anonymous says:

    I honestly can’t disagree with the hospital, she probably won’t live long or well whether she has a kidney atl all.

Copyright © 2008-2014 Disability Scoop, LLC. All Rights Reserved. | Privacy Policy | Terms and Conditions | Reprints and Permissions