Who We Are

It is interesting that you speak of it being God's will whether someone should merit a transplant, have you considered that "God" is speaking through the doctors/the hospital in not allowing her to go on the waiting list, thereby condemning her to a death sentence? Maybe this is what your God wants.

You've made the wrong argument. Instead of bringing God into it, why not just consider the fact it's blatant discrimination. They are condemning this poor child based on the fact she is intellectually impaired, that is what is really wrong with this situation.

What is Amelia's primary diagnosis? Photo of her suggests Cornelia de Lange.

Wolf-Hirschhorn syndrome,

Steven:
I couldn't agree more. When I read her mother's account, I was heartbroken. All the more heartbreaking is this--they not only refused to put her on the list, but they've refused to implant a directed donation from a matched family member. Awful situation. Thanks for speaking out against it.
Lynne

I think it is incredibly irresponsible for you to support the cause and promote it in a very far-reaching forum without finding out all of the facts. Certainly the hospital, & physicians should be given the benefit of the doubt, as their side of the story, & it may be factually very different than what Amelia's family is espousing, has not been made public. Largely due to HIPPA laws.
Additionally, Amelia has a multitude of medical issues that may have actually contributed to the decision rather than her intellectual ability. The family is disheartened, angry, disbelieving, and may not have revealed all that was discussed. And may not have heard everything. The mom stated she stopped hearing what was said once she saw MR on the paper.
YOu're in the Profession. You have likely dealt with families that have had selective hearing regarding bad news. Most especially when a child is involved.
Isn't it just possible that we are allowing our emotions to cloud our judgement?? Isn't it possbile that WE DON'T KNOW ALL THE FACTS???

I have significant experiences on various sides of this issue: as a professor in a medical school, father of a physician, liver posttransplant patient, and nationally recognized expert on developmental disabilities. The doctors, many of whom are influenced by the same prejudices and biases about disabilities as are others, work with probabilities and, frankly, sometimes flawed data in research reports. I think they should try to save everybody's life and let God decide when we die.

One day my doctors told my wife I was bleeding internally and they couldn't find the source because it was intermittent. They said "everything" had been done; there was "nothing" left to try; they asked surgeons to go in just to explore but the surgeons refused; my doctors were done and I would pass in an hour or two. No doubt that was the science of it. The lab results (blood pressure and hemogloblin) were way below the level needed to sustain life. Well, my wife begged them to try one last time to find the bleed; they did; it was found; and although there was a very rocky road after that, the bottom line is that they tourched the artery and I woke up and walked out of the hospital weeks later.

I have a friend who was in a car accident. It seemed like most everythign you could thionk of was broken or impaired. He was in a coma. For weeks they debated "pulling the plug." They didn't. A year later they wherled him out of the hospital. He talks fine, has some limited mobility, and so on.

Doctors should never quit. They don't know what will happen. They deal in probabilities, but for people like Amelia, probabilities mean nothing because she isn't a group of people but a single person.