Saturday, January 14, 2012

Amelia Rivera

Amelia (Mia) Rivera is a young girl with Wolf-Hirschhorn syndrome who had an appointment at the Children's Hospital of Philadelphia last week and met their transplant team.  The understatement of the century would be to say that it didn't go well!  An organ transplant evaluation denied due to developmental disabilities.  Again.  This was one of the first stories on this blog, and I don't really have much more to say now than I did then.  Misty Cargill's case was five years ago and Sandra Jensen's was 17 years ago, so it seems like this question in the transplant community should have been resolved long before Mia Rivera was even born.

As an aside, Mia's mother mentions a list of contraindications that includes hepatitis C and HIV.  Given that there are entire book chapters written about kidney transplantation in the hepatitis C positive patient, and a multicenter clinical trial of kidney and liver transplants in HIV patients has just completed enrollment, it's a little frightening to think that the transplant practices at CHOP could be so outdated.  The old days in organ transplantation really weren't good, so I hope that CHOP's practices are either very different than described or will change very soon.

The stories from before were adults who were otherwise in reasonable health, which made the denials based on intellectual ability even more stark.  The syndrome that Mia has is more complicated, and her mother's blog posts detail her other medical problems, so there may be medical reasons why she wouldn't do well with a kidney transplant that I can speculate on.  The downside is that I don't have any specific knowledge of this particular case; the upside is that I'm not a fluent speaker of PR-ese.  If her seizure disorder would be exacerbated by tacrolimus to the point where she couldn't take immunosuppressants, or if her heart disease or other problems make a major operation too risky, then a kidney transplant may bring more harm than benefit to her overall health.  Maybe that's what the transplant team meant to say, but it certainly wasn't what the family heard.  Effective communication of complicated information is beyond essential for transplant teams and their patients, so even this best case scenario doesn't reflect well on organ transplantation at CHOP.

Anyway, in the era of social media, the backlash is in full force.  CHOP is getting slammed on their Facebook page, and not doing so well on Twitter either.  I'm not sure how the story will continue for Mia, but it's definitely going to be a different experience than those who've had to deal with this before.

My personal thoughts?  First, it's wrong.  There are a lot of ways to say it, but decisions about organ transplants shouldn't be based on intellectual ability, societal worth, or perceived quality of life.  Second, it's disappointing.  Part of the disappointment is from the long history of denying organ transplants to people with intellectual disabilities, part of it is from the prestige of CHOP in general, and part of it is from having met transplant surgeons and nephrologists from CHOP at the ATC and ASN meetings.  It's a sad day to be a kidney transplant recipient when patients and families still have to deal with these obstacles, and it's a sad day to be considering a career in transplantation when people in the field are showing such unacceptable values.

11 comments:

meghan k said...

I read about Mia on her mom's blog (very emotionally driven). Thank you for taking the time to explain other reasons why the transplant team may have rejected her while supporting the worth of Mia (as an individual, not as a person with disabilities).

Anonymous said...

Hi I believe you may have mis understood something.. Amelia does not have Hep C or HIV but rather those sections were used to write the words brain damaged and mental retardation... the reasons for the transplant operation refusal.

"In the middle of both papers, he highlighted in pink two phrases. Paper number one has the words, “Mentally Retarded” in cotton candy pink right under Hepatitis C. Paper number two has the phrase, “Brain Damage” in the same pink right under HIV. I remind myself to focus and look back at the doctor. I am still smiling."

from http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

Creative Kiwi said...

Mia does not have Hep C nor HIV.
Those words just happened to be near the words "mentally retarded" and "brain damage" on the list the doctor was highlighting.

Chrissy, Amelia's mom, was just being descriptive in her writing to give the reader a clear view of everything she saw, heard, and felt that day during the meeting.
Mia's transplant denial was based solely on her cognitive abilities from having Wolf-Hirschhorn Syndrome. This is why her parents, friends, and family are so outraged and hurt.

Manu Varma said...

I completely understand that she doesn't have HIV or hepatitis C. My point with those examples is that they shouldn't be reasons not to get a kidney transplant any more than her developmental delay should be.

Andrea S. said...

It may interest you to know that the excellent organization "Not Dead Yet" has now blogged on Amelia Rivera's situation also. For those not already familiar with them, "Not Dead Yet" campaigns to educate medical personnel and the general public that, no, a disability does NOT diminish a person's capacity to enjoy life and, YES, the lives of people with disabilities ARE worth living. Their post is at: http://notdeadyetnewscommentary.blogspot.com/2012/01/philadelphia-young-girl-being-denied.html

You can find links to what other bloggers have said on the situation at http://specialchildren.about.com/b/2012/01/13/hospital-denies-kidney-transplant-because-of-girls-intellectual-disability.htm

Anonymous said...

Shame on you Children's Hospital of Philadelphia. This child has health insurance. This child's guardian's make these decisions, not you. This child has a donor for the kidney. There is no American rationale for your decision. We believe in freedom. We believe that this freedom, comes from God Almighty. Who are you to tell Amelia that she should die? There is no good reason for this child to die. You can save this life. I am a parent of a child like Amelia. My child has a better quality of life than me or you. She has friends, she has family, she has activities that she loves. Why should she die when we can save her? You need to close your doors. You are a disgrace to the wonderful profession that has shown so much love to my daughter and my family. Our children's hospital has given my child the opportunity to have a better quality of life than me or you. Reverse your decison or shut your doors!

Chrissy Rivera said...

Here is an update from www.wolfhirschhorn.og about Amelia. It is called kidney chronicles part three.

Manu Varma said...

Thank you for the update and good luck moving forward with the transplant operation!

Site said...

I've found your article accidentaly... Poor children(

Janie said...

Manu,

Since you are in med school and are the recipient of a transplant yourself, how about writing about the cost of organ transplants as well as what the recipient and living donor have to go thru medically.

Why don't you also write about the lack of organs available? All these folks merely looking at the emotional aspect of "oh, poor little MR girl getting denied" need to look beyond that.

There are other aspects than emotional that must be considered in any transplant situation.

I wonder how many of those who are "so upset" have actually signed their donor cards and discussed their wishes for donation after death. I wonder how many are on the registry for bone marrow, kidney, or liver transplants.

Manu Varma said...

Janie,

I'm very much aware of the costs of transplants and what recipients and donors have to go through.  As for the lack of organs available, this is the single biggest problem in organ transplantation and possibly in all of modern medicine, and I've definitely taken it to heart and done as much as I can to promote organ donation awareness.  However, I'm curious about which aspects of these issues speak to you with regards to transplant candidacy for Amelia Rivera?  In any case, all real concerns and I'm glad to write or talk or work on any of them.