Little Girl Denied Kidney Transplant Due to Mental Retardation

I am… fuming. On the outside, I’m calm. On the inside, I’m enraged. Today, I learned about a little girl named Amelia. She will need a new kidney within a year, or she’ll die. She has family members willing to donate in order to save her life.

The transplant team at Children’s Hospital of Philadelphia said NO. They have denied her ever receiving a transplant at that facility. Why? Because she is “mentally retarded.”

Yes, you read that right. Amelia’s mother, Chrissy Rivera, writes:

I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.

A bit of hope. I sit up and get excited.

“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.”

“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing.

(…)

I say the words and ask the questions I have been avoiding.

“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.”

The doctor and social worker left the room at that point, leaving a devastated family behind in a swirl of disaster. After some research, Rivera has found that this is not uncommon. People with developmental delays, or “the MR” (mentally retarded), are routinely denied transplants nationwide.

Amelia deserves to live. She has a family who adores for and fights for her every day. They deserve to have every precious moment they can get. She’s their baby, their heart. It’s a travesty for this transplant team to callously deny this child the right to live. How dare they hide behind this excuse of “quality of life”? This is not something that can be quantified by anyone other than the individual in question.

Besides what may happen to Amelia, this story has larger ramifications that special needs parents simply don’t think about until they’re in this situation. Simply put: What if The Munchie needed a transplant in order to live? Would she be denied because she’s not a neurotypical child? Does a transplant candidate have to prove that they have an IQ high enough to qualify?

This leads to more troubling questions. What is the threshold for such a team to determine “quality of life,” specifically “mental retardation”? I want to know how they come to the conclusion that someone like Amelia is not worthy of a life-saving kidney transplant. I also want to know the extent of this attitude. I don’t deny Mrs. Rivera’s research, but it’s baffling that this could be widespread.

Right now, the important thing is to get help for Amelia. There’s an online petition at Change.org, and that’s a good start. But it’s not enough. People need to call and/or write Children’s Hospital of Philadelphia, media outlets, and Congress. Make this known! I don’t do many calls to action, but this is one I’m begging you to heed. Please help save Amelia!