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Children’s Hospital Denies Withholding Kidney Transplant For Disabled Girl

By Pat Loeb and Stephanie Stahl

PHILADELPHIA (CBS) — Children’s Hospital of Philadelphia finds itself at the center of a heated campaign to get a kidney transplant for a disabled South Jersey girl.

It started with a blog post by the girl’s mother, but has gone viral on social media.

Chrissy Rivera has been blogging for months on an obscure web site for parents of children with Wolf-Hirschhorn syndrome, a developmental disability.

“She brings joy to our life,” said Joe Rivera, Amelia’s father.

“She’s amazing. She’s great. She is very loving. Her brothers love her,” said Chrissy Rivera, Amelia’s mother.

Amelia has had heart surgery, and now her kidneys are failing. Doctors at Children’s Hospital referred to their transplant team. Her parents say that’s when they were told Amelia is not a candidate for a transplant because of her mental disabilities.

“We were told many times throughout the meeting that she can not have the transplant because she’s considered mentally retarded,” said Chrissy.

The family says they were also told medications after a transplant would also be a problem for Amelia, who takes drugs to control seizures.

“I said so you’re saying in six months to a year when her kidneys fail you want us to let her die? And he said yes,” said Chrissy.

Outraged, Chrissy posted an emotional account saying that CHOP denied her two-year-old daughter, Amelia, a transplant because, by her account, the doctor said Amelia is “mentally retarded.”

By Saturday, CHOP was inundated with complaints. Its Facebook page was covered with hundreds negative comments. An online petition asking the hospital to change the decision had 16,000 signatures and counting.

CHOP has issued a statement saying it cannot comment on individual cases due to medical privacy laws, but reaffirms that it does not discriminate “in any way.”

Rivera, a bit surprised by the huge response, has declined to comment further, saying she likes CHOP and is still hoping for a happy ending in her daughter’s case. And late this afternoon she told KYW Newsradio that the hospital had contacted her to arrange a meeting to discuss her daughter’s case further.

Eyewitness News checked with the United Network for Organ Sharing, which manages the transplant system. A spokesperson said it’s up to individual hospitals and their doctors to determine if someone is an appropriate candidate for transplantation.

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  • Ex Dialysis Patient

    I know this denial seems uncaring, and unfair. But in reality it is not. After a transplant the patient has to monitor their health, look for signs of rejection, and MAKE SURE TO TAKE THEIR MEDS 2 times a day. (I kinow this because I was on dialysis for 3 years, and I got a Kidney in March of 2011).

    Is her mother going to stay home EVERY DAY, and monitor her daughter daily. check her urine flow to make sure there is no urine decrease. Check her tempatures. Take her to her monthly doctor’s visits, and Monthly Labs?
    All these need to be checked, and more, to ensure her kidney is not failing. It would not be fair to another patient if her kidney failed after 6 months because she went out of compliance.

    She wont die in a year, she can get dialysis treatments.

  • Raena Lilly

    I think they should give the girl the transplant because she is still a human just a little bit more slower. Also CHOP said that they do those procedures on other kids with disabliities so why no on her?

  • Girl With The Cane » Blog Archive Amelia Rivera Allegedly Denied Kidney Transplant by CHOP

    […] So, as of Monday, the Children’s Hospital of Philadelphia (CHOP) had contacted Amelia Rivera’s family to talk about a kidney transplant for the three-year-old girl, according to CBS-Philapelphia.  But the donor kidney will not come from the transplant waiting list, (although the Huffington post says that the hospital appears to have changed its original position that it wouldn’t perform the transplant surgery.) (….) […]

  • Tessa

    I am so sorry about what is going to happen if this very beautiful child dont get what she needs and soon my son is five and also has a mental disability and I am sitting here tring to think if I was going threw this . I would be calling and faxing every hospital and doctor in every state and country if I have too. She is a very beautiful little girl and just cause she has a mentel disability she is still breathing and has feelings she knows what is going on around her and this is a mistake alot of people make just cause she is speacial she is smart and at some things smarter then some one with no disabilities. God put her here and only he can say when he wants her to leave not a parent , family member or even a doctor ! We should beable to trust our doctors to make every effert to help keep us healthy not say you are disabled so we cant help you ! THAT IS A LAW SUIT !!!! Gob bless the little girl and her family hope and pray you get the help you need and find a docter that will do the surgery Call the shrinners Hospital in springfield , Ma they help only children with disabilities with surgerys ect… the ronald mcdonald house in springfield , ma as well for a place to stay if you can get the surgery there please keep us updated as to her medical issues.

  • Eric S. Lopez

    What are the reqiurements for the opertation?

  • noname

    i’m sure it makes you sleep better at night thinking the mother is not telling the full story here, because it’s just to hard to believe that decisions are being made on who lives (who gets the organs) and who dies (who does not). but that’s exactly what happens everyday. however it tugs at our heart when it’s a little child, who’s life has been deemed not worth saving because someone else see’s her life as not being a long one because of other factors and not contributing (what ever that means) because of her disablity. this mom is fighting for her daughtes life. and even she agrees that CHOP is the best in what they do, she’s not removing her, it’s just that she finds it reprehensible that they said no she can’t have the life saving procedure Like to see you stand by your comment when it’s someone you love Janet. you think she’s not going to do well with the tranplant? how well do you think she’s going to do without the transplant Janet?

  • Kristina Mc.

    This is so sad. It’s descrimination. A person’s IQ should be no more a factor then race or religion. It is normal for people to be denied because of Mental Disabilities. The best answer to this issue more donors.

    • roseyoungstewart

      are you and everyone in your family registered donors of any body part?

  • AZGirl

    This will be the norm once ObamaCare kicks in. Talk to anyone in Europe about their “free” healthcare and they will tell you that this is the norm.

    • renie mccallister

      Obamacare was passed by Congress and is in effect now. Nuerosurgeons were advisded by Federal Government that they can’t save life of a patient over 65 because patient has lived most of their life and it is not ecconomically effective to spend money to left them live longer. Under Obamacare Govt considered permiums thier money to spend on care as they wish. Patients are called “units” not people.

    • noname

      sad, but I agree with AZGirls point.

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  • Kim

    Thank you CBS 3 for airing the story. I am the adoptive mom of a little boy with WHS and I am so thankful that you got the story out.

  • Mary Ellen

    Hope lives in ongoing conversations. Hopefully there will be a peaceful resolve for this difficult issue. Glad that CHOP is extending itself for more conversation. If the conversations had been done appropriately to begin with this additional stress may never have happened. That said, what a great opportunity for parents to realize they need to be more engaged before, during and after their child is part of the helathcare system.

  • Marge Brown

    I am sure that CHOP receives millions of dollars in federal funds related to disability research. How dare they deny this baby girl treatment based on a “quality of life” judgement?!

    The “BabyDoe” legislation prevents doctors and hospitals from withholding life saving medical care to infants with disabilities. Mabe it is time to add the same protections for transplant and other medical procedures.

    Do we deny obesity surgery to people who could otherwise control their weight? Rehab for people who suffer from alcoholism or drug addiction? Why hold innocent people with disabiities to a higher standard?

    • ECS

      You’re missing the point, Marge. It’s not about denying “treatment” per se. The issue is the shortage of viable kidneys available to those requiring kidney transplants. The little girl needs a new kidney, not just “treatment.” That’s why there is the need to determine who receives the organ on a long long waitlist for new kidneys. If only there were an unlimited supply of viable kidneys to go around, such tough decision-making would not be needed. A kidney transplant is not the same as obesity surgery or alcohol/drug rehab — there is no need for donor organs in that kind of medical treatment.

      • CALI24

        But the family is willing to be donors within themselves or find one of their own, and NOT be put on a list. There is a big difference when that is considered.

  • Joe and Deb E.

    As parents of a developmentally disabled child we had similar experiences with CHOP. They have continually showed a lack of empathy toward this group although they claim to be advocates.

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