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NJ Parents: Daughter Denied Life-Saving Kidney Transplant Because Of Mental Disabilities

PHILADELPHIA (CBSNewYork) — A southern New Jersey couple claims their daughter is being denied a life-saving kidney transplant because of her mental disabilities.

Amelia Rivera was born with a genetic abnormality called Wolf-Hirschhorn syndrome, which can cause severe developmental disabilities.

The 3-year-old had heart surgery and now her kidneys are failing.

After being referred to a transplant team, a doctor at The Children’s Hospital of Philadelphia apparently told Amelia’s parents that she 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,” her mother, Chrissy Rivera, said.

The family said they were also told medications after a transplant would 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.” Rivera said. “I was shocked, I never once thought that this was an issue.”

Rivera said after doing some research she learned that it’s common for people with developmental disabilities to not get equal treatment in the medical field.

She blogged about her experience and it quickly went viral.

The hospital was flooded with complaints and responded with a Facebook post saying it can’t comment on individual cases but did address the concerns saying, “We’re listening. We hear your concerns and take seriously your posts, emails and phone calls…Please know that you have been heard and that your feedback is appreciated.”

An official statement from Children’s Hospital says, in part, it “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.”

Experts say the supply of organs for child transplants is extremely limited and most adult organs won’t fit.

Thousands of people have signed an online petition asking the Philadelphia hospital to reconsider.

Please leave a comment below…


One Comment

  1. WCBS Should Be Ashamed says:

    It’s really sad that CBS puts such disinformation out there. Not everyone who need a transplant is medically suited to receive one. This girl has other issues that preclude her getting a transplant, but CBS just wanted to say how heartless the hospital was.

    If kidney failure was a “death sentence,” very few would live long enough to get a transplant. The average wait for a kidney is around 5 years. Why can’t this girl go on dialysis when her kidneys fail? CBS just ignored the facts in an attempt to sensationalize this whole situation.

    1. JENNY LEE says:

      well, the average wait is around five years but they really shouldn’t let her die! Thats not fair! Life should be availible to all!

  2. Jerseymom says:

    The family wants to do a private donation- one of them will donate the kidney, so she isn’t getting one off the registry. So Amelia getting a kidney isn’t taking one from someone else.

  3. jerseyjoey says:

    Sad when people use the already liberal media to try to get there way and this is a textbook case here. The real story behind this was not because the child is retarded or has any disability its about the other medical problems the poor girl has that make her too weak and fragile and a poor canadate. Now that this FACT has been said i do feel the hospital is legally scared to procede and told the mother so to her face, but of course the discrimination trump card comes out. If you want to lay blame here you and the mother can start with LAWYERS.

  4. NEWYORKER says:

    Bottom line is if she had money to offer a wing in the hospital she would get that kidney regardless of her disability Its a very sad world we live in Money talks

  5. patruns says:

    There is really nothing more to say and the media should back off. Somewhere a child with far greater chances of success may get denied a transplant because the media would have you believing this child deserves it more. This is not a racial issue nor a class issue. I feel badly for this child but the realities are what they are.

  6. eve says:

    i understand that it hurt the parent of the child, but it is a reality the child can have a complication again ,and taking the chance of somebody that cane tolerate much better the procedure , life is hard,but the parents have to understand it is a reality

  7. Love NYC says:

    Heartbreaking. I am ashamed. What have we become with all our advances in life?

    1. patruns says:

      What have we become? We have become capable of great things but we still cannot solve all.

  8. utilitarian says:

    so… use a healthy organ on a child who undoubtedly will have massive complications due to the medications she is currently on, or use a healthy organ on a child with half the risk for complications. Given the risk already involved in a transplant, the doctors have to choose which path will lead to a more survivable outcome for the patient and the organ. But, people don’t see things that way since they cannot take a step back.

Comments are closed.

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