Tuesday, January 17, 2012

A non-writing post! Let's talk about Amelia Rivera.

A friend of mine posted on her blog (which is wonderful and thought-provoking) about Amelia Rivera. This story's been going around for the last few days, largely on the blogosphere but USA Today and ABC News picked up the story too. However, in case this is the first you're hearing of it, here's the basics: Amelia Rivera is a three-year-old girl suffering from Wolf-Hirschhorn syndrome. Her kidneys are in decline, and within the next six months to a year, she will lose all function and need* a transplant. Her hospital declined to give her a transplant, and cited mental retardation as the only reason.

That * doesn't go to a footnote because this post will be long, but I'm using it to distinguish "will die without this" and "will die without this or the alternative treatment." Sometimes, you need a blood transfusion, because you don't have enough of your own blood left. There's no alternative. Sometimes, you need* a blood transfusion or a platelet transfusion or some medicine that will make you clot faster, because you're losing blood. There's a couple of options to take, some better than others.

Now, assuming that the mother's account of the conversation is basically accurate, it was handled incredibly badly by the hospital. To deny care because of mental retardation? That's absurd. It's been pointed out that English doesn't seem to be the doctor's first language, but that it was the social worker's first language, and that's what supports, in my mind, that yes, the mental retardation was the reason the team decided to give her. Regardless, this woman clearly has a reputation for being Dragon Mom, so why would you send that doctor? It seems like common sense to me, when you know you're going up against a fighter, that you would make yourself as airtight and criticism-proof as possible, starting with sending in people who can communicate clearly. But...(there's always a but).

But I don't think it's an outrage not to give Amelia a transplant. This is not the popular reaction, but there are several reasons for this.

The fact is, child organs are in huge, huge demand. Children can't be living donors, and very few children die in such a way as to leave usable organs. You think the transplant list for adults is a mile long? Jesus. I'm seeing a lot of "Amelia may not have an optimal life, but she deserves the life she has." So...do all those other children not deserve their lives? I understand the sentiment and I sympathize deeply with Amelia's mother. But I also sympathize with all those other mothers whose children need transplants. It was messed up that the doctor didn't say all of this, because you definitely should explain everything in a situation like this, but I'm kindof baffled at how NO ONE is bringing this up. I can only guess that there's a huge misunderstanding of how transplants work and the realities of needing a transplant.

There's also a lot of "it's murder not to do this transplant" (mostly in the comments on Mrs. Rivera's post) which is just...rude. Absurd. Wrong. Damaging. I mean, can we not throw around words like "murder" when dealing with an already-distraught mother? Can we get some fucking facts straight before we lose our brains? Does Chrissy Rivera need to have the words "your child is being murdered" planted in her head right now? Honestly, I'm a proponent of unconditional free speech, but some days...

I don't really want to get into a conversation about how we assess who gets organs in this country; it's a complicated formula combining many factors. The conversation I want to have is about the reaction to this case and how it could have been handled better both within the system and by the public. Now, as I said before, to deny an organ based on mental retardation is absurd. If a kid with Downs needed a heart or a severely autistic kid needed a kidney, yes, put them on the list and give them the medical treatment they need. But...

To deny a transplant based on Amelia's diagnosis is understandable. Deciding who gets what is a tough, tough decision, especially in children when there is such a vanishingly small number of usable organs at any given time and so very many patients in need. The life expectancy of people with Amelia's diagnosis is unknown, but a lot of patients don't survive childhood. Also, babies and children with WHS have seizures. These go away as the child ages and comes into adulthood, but a sufficiently strong seizure can kill you dead all on its own -- there's a perception I've encountered (my dad has epilepsy) that the only way to die from a seizure is from outside force like hitting your head or choking on your tongue/saliva/vomit, but that's not true. Also, people with WHS have weak muscles, which leads to a poor cough (and resultant higher risk of respiratory problems), difficulty moving normally, and reduced ability to handle a major surgery like transplant operation. We can't speak authoritatively on Amelia without knowing the details of her case, but it is possible that any transplant operation for her would be a hail-mary, when there are thousands of other kids out there -- not necessarily more deserving, but without the risks Amelia has -- who need a kidney too. Assuming we're right, Amelia can't go on the transplant list. But...

Maybe we're wrong. In fact, it's quite likely that we're wrong. However, what we're not wrong about is that kids with WHS have seizures. Even if Amelia has never had a seizure, she is likely to have one at any time -- seizures/epilepsy can lie dormant for years before striking. The first time I saw my dad have a seizure, he hadn't had one for three or four years before. The more likely (here meaning "pretty much necessary") scenario is that she's had seizures, and she's on medication to suppress them. A transplant means she has to be on antirejection drugs for the life of her new kidney (between ten and fifteen years -- so best case scenario she needs a new kidney by age 20, which is fine, because she'll be much better able to tolerate surgery by then and have a larger pool of donors she can receive from). These drugs are meant to suppress your immune system (rejection is when a transplanted organ is attacked by the immune system of the recipient and loses function or dies; the only way to prevent it is to shut down the immune system, using antibiotics and antivirals as a poor substitute), and Amelia is already at risk for chest infections, so that's a problem on its own. If that weren't enough (and it's not for me), a risk of them is seizures. They aren't compatible with any anti-seizure medication. If Amelia gets a kidney, she is going to have seizures with an attendant risk of dying from one, not to mention what effect a seizure might have on the very delicate new transplant. Amelia can't go on the transplant list. But...

Amelia's family offered to donate an organ for her. That's fabulous and they get all the props in the world for that. To give of your own flesh to save another's life is an incredibly selfless and sacred act. But Amelia is three. Putting an adult organ in a child body, let alone a toddler, is incredibly problematic -- a child's heart doesn't have the capacity to get all the blood it needs into the transplanted kidney, so blood pools and clots and the organ eventually dies. So that cuts out the vast majority of her family. Does Amelia have toddler-age cousins? Probably, but donating an organ in toddlerhood causes lifelong complications. You really can't be a living donor without massive problems until you've mostly matured physically and they don't even allow living donors younger than fourteen, ever. There is just no ethical way for a three-year-old to donate an organ (which assumes that any of those cousins are a match, which is by no means a guarantee. There are lots of siblings and parents who are not matches for their siblings or children, and cousins just gets dicier). So, that rules out the rest of Amelia's family. She would have to go on the transplant list. But she can't go on the transplant list for the above reasons. The conclusion we must come to is that there is no viable way for Amelia to get a transplant.

So...is that it? Amelia just dies? No. Not in the slightest, and that's what's irritating me about this. If that were the case, trust me, I would not be making this argument -- I'd grieve for Amelia with everyone else and focus my anger on the poor handling.

Dialysis. That's the word I keep looking for and not seeing. Dialysis is a process where they basically hook you up to a machine which does the blood cleaning job for you. They put a tube into a blood vessel and run the blood over one side of a membrane. The other side contains dialysate, which is saline with some other stuff in it. The toxins your kidneys would normally filter pass by osmosis into the dialysate, and the dislysate can be disposed of basically any way you'd dispose of urine. It's not perfect, but it's a hell of a lot better than dying from kidney failure, and there are people alive today who have been living on dialysis for decades. Children at the age of three or four can be dialyzed without much problem. (It gets more complicated for an infant or similar, but we can even dialyze the youngest preemies and have it go fine.) There is no absolute contraindication for dialysis, not one. Is it a bigger pain in the ass? Yes. But it beats death, don't you think?

"We can't give her a transplant" is not a death sentence.

Now, there are two ways to read Chrissy Rivera from her account. The first way, and the way I initially read her and find more likely, is that she's intelligent, informed, and engaged in her daughter's treatment, getting all the information from all the sources she can to give her daughter the best chance. The second way is an overly defensive, histrionic brat who heard something she didn't like and went to write a mean blog post, villainizing the perfectly reasonable doctors. I feel sortof dirty even typing that out, because I definitely think she's the first, but if that is true, there is something that doesn't add up.

Why doesn't Chrissy Rivera know about dialysis?

The doctor clearly didn't offer it, and that's fucked up, but a doctor is not the only source to learn from. I have heard not a whisper about dialysis from any of the sources on this story. You would think it would be an important detail to bring up at some point if there was a reason why dialysis wasn't realistic for Amelia. I would have expected something -- if Mrs. Rivera's account is full, I'd find it most likely for there to be a line in there where she tries to explain why Amelia can't have dialysis (or just refers to it, if the doctor already knows it). If not that, then a brief explanation at the start of why no transplant really is a death sentence for Amelia.

If Chrissy Rivera is active in her daughter's treatment, how has she not discovered dialysis? Does she know she's not "fighting for her daughter's life" so much as "fighting for the more convenient treatment?" Would it give her some comfort to know that all hope is not lost? Is it maybe something she would like to hear that people live for decades on dialysis, and that Amelia can survive and even thrive with zero kidney function until she's reached adulthood and family donation is realistic?

Is it okay that another (well-meaning, but factless) parent started a change.org petition (I'm choosing not to link to it because I don't support it) to try and force the hospital to do the transplant? In my opinion, no. Apparently, the hospital has had the Riveras back into the hospital to discuss the transplant and it sounds an awful lot to me like they're caving to public pressure and giving Amelia a kidney that may not last long. Amelia deserves her life, yes. But who is going to die so that she can live? Mrs. Rivera certainly finds it worth it, but does that other mother? Then again, can't that other child live on dialysis? But what if that child does die where dialysis could have saved her, and what if Amelia might have lived without the kidney?

The truth is, it does come down to a completely unquantifiable measure: worthiness. Amelia is not unworthy because she has special needs, but she's not more worthy either. Isn't the point of this whole thing to get equal treatment, or do we want preferential treatment? The hospital handled it badly, yes, but what is their position? Impossible is what it is. Why are we demonizing a hospital for awkward handling of a bad situation? Why do we accuse them of playing god for the simple act of choosing who gets care? If you can't care for everyone, you have to choose who gets care. The alternative is that no one gets care, and I don't think that's any better.

It's messed up that no one told Mrs. Rivera about dialysis, but once we've agreed on that, I think we need to suspend judgment until this plays out.

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