I didn’t end up writing about the Amelia Rivera controversy as I had intended. Most of you can probably imagine, at least in tone, what I would say. You know what I wish I’d seen more of in the things other bloggers, news networks, etc., DID and ARE writing on the issue, though? Information, or links to such, about the issue(s) of organ/tissue donation and transplantation at large. So, I think I’m going to cover that base….or at least point to it….since I haven’t noticed much of anyone else doing so — except tangentially in a few “defenses” from the hospital that initially denied the child’s transplant, where pretty much anyone looking that far wasn’t going to see it as anything but a scapegoat. No matter your stance on the Riveras’ case, I don’t think it’s quite right to formulate it without first having a healthy understanding of the broader context into which their experience falls. Am I an expert on this issue? Nope. But I do have some experience with it, care of having a variety of friends and relatives who did — or failed to — or still need to receive another chance at life, care of donated blood and/or live-donor or cadaver transplants. Before being the mother of a neuro-disabled child who was born a medically fragile preemie, I was, oh, the sister of one of the most complicated liver transplant cases in history-to-that-point. There is one moral all of the stories share, one key point in the deluge of relevant information. It comes down, in a way, to supply and demand.
As long as there is a greater need for healthy blood, tissue and organs than there are donations to meet all of those match-required needs, choices between potential recipients are going to have to be made. Sometimes those choices are going to infuriate the masses, and sometimes a right to life will be prioritized with barely a sigh, a whisper, and one shuddering sob. Even when all the “right” choices are made….some one is going to die, because some one else, higher up on the waiting list, was given the organ that might otherwise have been a match for them, in time.
Are you getting this? If there were enough donations, the chances are significantly greater that no “choice” about Amelia’s transplant would’ve had to have been made, because there would have been enough matched kidneys to go around for everyone who needed one with her health’s level of immediacy. Debating the so-called relative value of her life might well have been a moot point (regardless of whether or not you feel it should be, even as things are now), because offering her a chance for a longer and better life would not have to have meant doling out death to someone else at the same time. If there were enough donations, the chances are significantly greater that whether Amelia was granted her transplant sooner or later, it would not have to mean someone else wouldn’t get theirs, further down the line, either.
Every single one of us — excepting a few of the medically bizarre — constantly makes new blood, new platelets, new plasma, new bone marrow, etc. Not all body parts are regenerated naturally in a healthy body, but many are. Now, I’m not going to get into various religious strictures (or sometimes inaccurate beliefs about some of them) as pertaining to donation. That’s a whole ‘nother can of worms. From a purely physical standpoint, almost every single person alive could donate at least SOMETHING that would help SAVE SOMEONE, without any significant….if any at all….medical detriment. When it comes to many things, they could do so REGULARLY. Again, we’re not even talking about organs the body has more of than it strictly needs, or organs that might at least partially regenerate, here. We’re talking about things that any given healthy body could, or is going to, completely replace within a month or two, ANYWAY. And then, of course, you’ve got the fact that every single one of us is going to die, and — again, spiritual beliefs aside — none of us are going to be losing so much as a more energetic day, over donating body parts at that point. Do you how many lives can be changed by one carte-blanche organ and tissue donation card? Look it up, I dare you.
It shouldn’t have to be a dare, but I know it is. The whole issue is remarkably taboo, except for when a particular case strikes a personal chord for people. Back in high school I wrote an article for my school’s science newsletter, addressing a variety of popular rumors and beliefs relating to donation and transplantation. It was edited into oblivion, judged to be too harsh and touchy a subject for teenagers. Within a few years, several of the students at my school, who would have been students at the time the educational newsletter was distributed, died in car accidents. None of them were donors, but if any of them HAD been lead towards being so by actually learning about the issue?!….Their gift would have saved the lives of several OTHER kids. The DMV is often the first and only place people even hear that donor lists EXIST, and I’ve yet to go to a DMV that allowed information related to it, to be made available there. There are some places that will sport and distribute red ribbons for HIV/AIDS awareness, but are squeamish about inquiries into whether they’d consider green ribbons. (At the time of my sister’s transplant, green ribbons “belonged” to Organ Donation and Transplantation awareness month, in April.) Yep, that’s right….the issue is judged to be more inappropriate, more controversial, more uncomfortable and awkward to address, than AIDS is.
Do I believe that Amelia’s life is worth less than that of any other little girl? No, of-freaking-course not. I also don’t believe that it’s necessarily worth more. The whole thing makes me sick, but part of that soul-nausea comes from the awareness that there are thousands of people screaming bloody murder about the fact that one special needs child is being judged as less practical a choice as a recipient, all while doing nothing in the grander scheme to make such judgements unnecessary. As many people are injured, have congenital defects, are afflicted with disease or specific degenerations of age….THERE ARE FAR MORE PEOPLE, AT ANY GIVEN TIME, WHO AREN’T. If our culture was less ignorant, less afraid, less selfish, these things wouldn’t have to make the news.
I could spend hours providing links to different informational and registry sites. Later on, when Ash doesn’t have yet another cold and is sleeping better, I might. For now, I’m going to make a heartfelt plea for you to go looking for some. Start with links off of hospital sites, as those are likely to have more reliable and accurate information. Educate yourselves. Educate each other. Whether or not you’ve read about it, lives are depending on it.