Some of you may have been following the story of Amelia Rivera, which went viral late last week.
The tl;dr version is that Amelia, a three year old child, was born with Wolf-Hirschorn Syndrome. This is a rare genetic condition that causes physical as well as intellectual developmental delays and disabilities. She is in need of a kidney transplant, and the Children’s Hospital of Phladelphia has determined that she’s ineligible for one. What makes this a unique story (or maybe not, we’ll get into that) is that Amelia’s mother is claiming that a doctor and a social worker at CHoP told her that Amelia was not eligible to receive a transplant because she’s mentally retarded.
Chrissy Rivera posted her story online on January 12th and it went viral among the disability rights activist blogs all this past weekend (which is how I learned about it). She and her husband were contact by CHoP last Sunday to come in for another meeting about a transplant for Amelia this week, so we’ll see.
There are so many issues tied up in this story that it’s difficult to analyze, but I’m going to give it a try.
1) First of all, it’s unfortunate that the doctor and the social worker didn’t appear to have any training on delivering bad news to parents of an ill child. The doctor might be excused because–from what I can glean from Chrissy Rivera’s article–English may not have been his first language. I have no idea what was going on with that social worker (and if the account of her actions is even remotely accurate, I would question whether she should stay employed by CHoP).
I’ve heard a lot of anecdotal evidence that surgeons in particular don’t receive training in communication with patients. This is an issue that medical schools have been striving to correct, but apparently they still have a long way to go. The importance of bedside manner, particularly when dealing with unhappy news, can go a long way towards preventing problems from escalating.
2) I suspect that what the doctor and social worker meant to communicate to the Riveras wasn’t “Your daughter’s not eligible because she’s mentally retarded” but “Your daughter’s not eligible because her Wolf-Hirschorn Syndrome has resulted in medically significant brain damage and/or compromised organs, which already mean she’s looking at a significant reduction in life expectancy. When that’s combined with the risks inherent in transplant surgery plus the dangers of the necessary follow-up treatments, she’s such a high risk that we’ll probably kill her in our attempt to save her life.” However, apparently that’s not what came out.
We’ll never know for sure, really. In her blog post, Chrissy Rivera mentioned that things got “hazy” while she was talking to the doctor. Author Lisa Belkin spent three years observing how hospital ethic boards work. She wasn’t present at the conversation between the Riveras and the CHoP staff, but she has been present at other hospitals when doctors have had to give this kind of bad news to parents. It’s not unusual, she says, for the parent to remember hearing from the doctors something that’s at a total variance with what was captured on her recorder.
It’s entirely possible that Ms. Rivera was so distraught from hearing that the hospital wouldn’t perform a potentially live-saving procedure on her daughter that she didn’t hear the doctor and social worker correctly, or took what they said in the worst possible light. Again, the doctor might have been disadvantaged in explaining things because of English not being his first language.
This incident with Amelia Rivera touches on one of the core issues that disability rights activists fight: the presumption by the able-bodied that being disabled makes life not worth living, or at least makes the lives of people with disabilities less gratifying and valuable than those of non-disabled people. It’s usually couched in language of “she’s suffering because of her disability” or “how could someone want to live like that”. It’s very pervasive, and it affects how disabled people of all sorts receive medical care.
Even moreso, it hits every parent or caregiver of disabled children right where they live, because when they see a case like Amelia Rivera’s, the first thought that pops into their heads is “What if that were my child?”
Hearing such news is distressing under the best of circumstances, but hearing such news when the patient is your disabled child is not just stressful, but hurtful. Because ultimately, you are going to conflate the news with the idea that this person or organization doesn’t think your child should continue to live because of his disability.
For a parent of a child with disabilities, it’s impossible not to get emotional hearing about a situation like Amelia’s. You spend so much time trying to help your kid, trying to see the positive in their situation, looking past their disabilities, that when ugly reality rears its head and you have to confront a situation where his diabilities stand in the way of what you want–and you might not be able to push past them–that you lash out at everyone around you.
The Riveras obviously love their daughter. They are grasping at straws trying to save Amelia’s life. It’s hurtful to hear that a hospital, of all places, is refusing to do something about it. I can’t help but wonder if, in between Ms. Rivera’s anxiety over being told ‘no’, and the doctor’s possible lack of command of English, if she’s simply chose to hear that this was a case of prejudice against her daughter rather than one of careful consideration of the medical realities brought on by Ameila’s W-H Syndrome.
3) And speaking of medical realities: I’m sure the hospital’s ethics board considered several factors:
a) A third of people with W-H die before the age of two. Some survive into early adulthood, but that’s still pretty rare (Amelia’s three years old).
The 4P-Support Group posted on HuffPo in the comment section:
There have been great advances in medical care and treatments that have enabled our kids to live longer, happier lives. There is no reason to expect a child with WHS will live a shorter life than the rest of the population based solely on having this genetic condition. Without the presence of inoperable congenital defects and other untreatable conditions, and with routine, proactive and extraordinary care by their primary physician and specialists our children are now living much longer than originally predicted in the 60’s and 70’s. The 4p-Support Group has knowledge of over 570 children with 4p-/WHS since it was formed over 20 years ago, of which 130 have a date of birth in 1990 or earlier. 99% of these are in the US alone. There are many WHS heroes; for instance someone who learned to walk at the age of 18 and someone who is 62 years old! Mia Rivera is a WHS hero! We have some sayings in our group; “never say never”, “let your child show you what they can do” and “everything is in their own timing”.
While I appreciate advocacy from the people who actually live with these disorders, the above strikes me as management by exception. 130 have made it to age twenty or older with this disorder? That’s an extremely low percentage compared to the general population. I have no idea how many children with W-H Syndrome were born in 1990, but I can’t imagine that this number is truly significant, simply because the author of the post would have said so (“There were 150 children with WHS born in 1990, and twenty years later 130 of them are alive and living great lives!”).
Parents and caregivers of the disabled often put the best possible spin on information about the disability. It’s been interesting watching this play out in the disabled rights blogosphere, because the parents have been screaming about how the hospital is clearly coming at this with a horribly skewed perspective–without noting that as parents of disabled children, their perspective are incredibily skewed, as well.
I’m digressing, so I’ll just note that I’ll talk about that–and other disability issues–in another post. To continue….
b) Amelia’s W-H creates medically significant issues that could threaten her life if the hospital tries to try to do a transplant on her. Amelia’s undersized for three years old, which makes taking an organ from a living adult donor impossible–it would have to come from a young child. The Riveras claim that they plan to have a donor come from the family, but I’m at a loss to explain how they’ll persuade another parent to give up a kidney from their young child, even a relative. She’s got brain damage that makes her prone to seizures, which makes certain necessary post-transplant medications exceedingly dangerous for her. Her movement is restricted, which put her at risk for infection. There would be enormous challenges for a normal person following a kidney transplant; for a child with W-H–even one who receives excellent care from her parents, like Amelia–they are likely insurmountable.
It’s a horrible situation all the way around. I feel for the Riveras. I can’t imagine their pain.
But question of whether or not a patient is a suitable candidate for a transplant is a valid one. Even a best-case-scenario requires that the other hallmarks of Amelia’s syndrome don’t worsen, and that’s highly unlikely.
I don’t know how this situation could be resolved with everyone being happy. If Amelia doesn’t get the transplant, she dies, and the Riveras will likely blame–perhaps even sue–the hospital. If Amelia gets the transplant and dies (which seems probable, given what we know), it’s possible that the Riveras will still blame–and perhaps even sue–the hospital.
In the end, though, I truly believe that–despite how the situation was fumbled by the doctor and the social worker–CHoP isn’t denying Amelia a transplant because she’s mentally retarded. They’re denying it because she’s got a syndrome that shortens her life, and a transplant will very probably shorten it even more.
Because of Amelia’s medical history and her syndrome, just undergoing a transplant procedure could very likely be a death sentence. That alone is reason enough not to give Amelia Rivera a transplant.
