Fortunately, this story is attracting national attention:
He says about three more sentences when something sparks in my brain. First it is hazy, foggy, like I am swimming under water. I actually shake my head a little to clear it. And then my brain focuses on what he just said.
I put my hand up. “Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?”
The tears. Oh, the damn tears. Where did they come from? Niagara Falls. All at once. There was no warning. I couldn’t stop them. There were no tissues in conference room so I use my sleeve and my hands and I keep wiping telling myself to stop it.
I point to the paper and he lets me rant a minute. I can’t stop pointing to the paper. “This phrase. This word. This is why she can’t have the transplant done.”
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.
Amelia "Mia" Rivera has Wolf-Hirschhorn syndrome, a complex genetic disorder that causes mental and physical impairments, and her family said that the 3-year-old will die if she does not get a kidney in the next six months to a year.
Mia's mother Chrissy Rivera has said the family is willing to donate a live organ, but Children's Hospital of Philadelphia has reportedly told her that they will not recommend transplantation for the toddler because of her disabilities.
Rivera blogged about her daughter's plight last Friday, and now more than 20,000 online supporters from 15 states are petitioning the hospital to give the toddler the kidney they say she needs to survive.
"I didn't think it was going to be an issue," said Rivera, a 35-year-old high school English teacher from southern New Jersey who has two other children, aged 11 and 6.
When the family went to CHOP last week to discuss the transplant, Rivera said she "thought we were just finding out how transplant works and how we could be a donor."
"But then, I was told we couldn't because she was mentally retarded," she said. "Those were the exact words on a piece of paper."
The hospital says it can't comment on patient cases.
But in this case--if you read Mrs. Rivera's blog--you will see that the child's nephrology doctor told the Riveras that they had six months to a year before their daughter would need a kidney transplant. Apparently, no one said anything about little Amelia having some underlying health condition that would make a transplant impossible until the parents met with the transplant team, at which point they were told that her mental retardation made her ineligible--not, according to Mrs. Rivera, that there was some physical impairment that would hinder the surgery or make it unlikely to be successful.
To be perfectly honest, I'm not all that surprised by this. Angered, yes, but not all that surprised.
I've heard stories time and time again from parents of children who are disabled about how callously, negatively, unkindly and coldly they are treated by medical professionals--not all, certainly, but enough to place a barrier of distrust between parents of children with disabilities and their doctors. A certain percentage of American doctors seem to have absorbed the phrase that originated in Nazi Germany: Lebensunwertes Leben, or "Life unworthy of life." They see no merit at all in the life of a child who will probably die young, who is physically and/or mentally impaired, who may never reach--in that ugly phrase--his or her "full human potential" (and I'd like anyone to demonstrate who, exactly, has done so?). They may start out by counseling parents somewhat kindly, especially if the child's condition is diagnosed in utero--but let the parents show a bias for life for their child, and they will often grow increasingly hostile. Once the child is actually born, the attitude is often: well, you selfishly chose for this child to experience suffering and a less-than-perfect life, so don't come running to us when he or she is ill or needs help; the sooner he or she dies of some natural cause or progression of the disability, the better for everyone.
Like I said, there are heroic doctors and nurses who reject this attitude with horror, but that doesn't mitigate the suffering inflicted upon the families of the disabled by those who display this attitude--and, sometimes, open contempt--to the parents. In addition to the ordinary difficulties and struggles of raising and caring for a child with disabilities is added this crushing weight of derision, this tendency to view the child as being somehow unworthy of life, of medical resources, and of transplants that should go to "normal" kids--even if, as in the Rivera's case, the family is offering to find a donor kidney from among Amelia's own relatives.
Long ago, I took a class at a Catholic college in which we discussed life issues, and I recall the teacher saying that the "choice" of abortion would quickly become an obligation for some women, from society's viewpoint. I thought at the time that this was a bit farfetched, as pro-life as I was and still am. How could the pro-abortion side, so enamored of "a woman's right to choose" to have her child slaughtered in utero, stand idly by should women be pressured or coerced to do so? But the subtle coercion that is out there takes many forms, from the daughter who is told she'll be thrown out of the house to the woman with disabilities ordered by a judge to abort to the pervasive attitude out there that children with disabilities don't deserve to be born and should die as quickly as possible. All it takes is the belief that there is such a thing as "life unworthy of life" for these things to happen, and we are much further along that path now than I ever thought we would be in my lifetime.
UPDATE: It appears that the hospital is reconsidering (hat tip: Mark Shea). Good! If no parent ever has to hear again that their child isn't a candidate for surgery or transplant solely because of a mental disability or cognitive impairment, then little Amelia and her parents have done a great thing for those with disabilities by raising awareness of these sorts of policies.