Friday, January 13, 2012

Stand Up.

Edited to add(1/14): I've received several emails from people who are friends of CHOP, asserting that this is not the full story.  I agree that the process to determine candidacy for a transplant is probably quite complex, and I am hopeful that the IQ of this girl was not the sole cause for her denial.  However, if "mental retardation" played any part in her denial, then that is despicable.  I'm happy to do my small part to spread the story of another special needs parent who is begging to have her story spread.  But I'm not really interested in engaging in rounds of debate about it-because I simply don't know any more than what is here.  I'm not leading a crusade, I'm just sharing a story that a mom asked for people to share. 

A story popped onto my Facebook feed this morning, and my friend included a tag line about being angry that people judge the lives of people with disabilities as "less worthy" or "having a lower quality of life" than others. 

I didn't open the link.

Sometimes . . . well, sometimes I need to take breaks from all-things-disability. 

An hour later, it popped up again.  And then again.  Finally, I opened it. 

You need to hear this story. 

I think it's best if you go right to the source.

In case you're not in a link-clicking mood, here's the summary: A little girl (Edited: She's 2, nearly 3 years old. Younger than Maya. Her picture is on that link) has a genetic condition.  She will need a kidney transplant in the next 6-12 mos (this is expected, and her levels have been monitored for the past 3 years).  At her appointment at CHOP (Children's Hospital of Philadelphia, known for being an excellent children's hospital) on Tuesday, her parents were told that she will not be eligible for a transplant because she is mentally retarded.

She will not be eligible to get a kidney transplant, which is necessary to keep her alive, because she is mentally retarded.

The end.

When the family (in a rage) said Well, whatever, we'll just find a kidney in the family to donate to her the doctor responded with We will not do her surgery here.  She in ineligible because of her quality of life because of her mental delays.

If you are somewhat horrified and somewhat skeptical, thinking Come now, there must be more to it than that . . . no doctor gets to look at a little girl and say "Oh, you are delayed and you're life isn't worth living, so I will not give you a kidney and you will die" . . . well, you are wrong.  That's the story.

Are you ok with that?

Because you can be damn sure I'm not ok with that.

Stand up, people.  It's time to be counted.  If this were Maya, I know that you would help me rally the troops (and perhaps a firing squad) . . . so help Amelia's family.  I can't imagine the state of her parents.  Let them see their rage against such a gross misjustice spread and affect change.

 Take 45 seconds and do these 3 things. Please.

1. Go to this link and sign this petition, which demands that CHOP grant the transplant (and will hopefully cause a policy change at the hospital):

2. Write on CHOP's Facebook wall to express your disagreement/disgust/other adjectives.

3. Share the story.  Share Amelia's mom's link, or the link to this post, or the link to the petition.  Put it on Facebook, tweet it, email it to friends.

We cannot be ok with this.  And if you're not ok with this, you have to make your voice heard.


~~CDM~~ said...

I have to say that I do think there is more to this story. Because I know, personally, several children who have received transplants at CHOP with genetic conditions, developmental delays, and what likely qualifies as "mental retardation." Including a boy with a stroke, significant brain injuries and seizures who received a heart transplant less than 6 months ago. CHOP has transplanted several children with Down Syndrome who have been turned down for transplant at other hospitals.
And we'll never get the hospital's side of the story due to HIPAA. But I really think there has to be more reason than that.

rameelin said...

This is such an outrage. I could literally cry over my own baby thinking about it. Thanks for sharing--we have to do something about this.

Dana said...

CDM- Through this blog, I also have come to know several children who have had surgeries at CHOP who would likely meet the categorization of mentally retarded. Perhaps it came from the doctor? Perhaps there is something else at play? Perhaps not?

It's the not that scares me. And I'm more than happy to sign a petition and write on a Facebook wall and say "don't withhold procedures from children who have different IQs. That's not your right." because I agree with that, no matter what the story is.

And I hope that CHOP will come forward and make their policy very, very clear. And that this girl (and any other child who needs it) will have whatever surgery she needs.

Kathleen said...

I understand the outrage about this story, but I can't help but think that if this were accurate it would be blown all over the mainstream media, at least here in Philadelphia. And it definitely hasn't been.

This would be difficult to believe of any hospital, but particularly of CHoP.

Dana said...

I expect it will be, Kathleen. It's just hitting all of the big special needs blogs now (Love that Max just put it up---and while I don't take much time to double check facts-that's just how I roll---Ellen does, I think).

~~CDM~~ said...

There are a lot of criteria that come into play when determining eligibility for transplant. Financial, insurance, family support, medical conditions that may be exacerbated by transplant meds, (high blood pressure, skin cancer, migraines, kidney issues) weighing the risks of transplant against the risks of the alternatives - in this case, dialysis.

Transplants bring with them a whole host of issues and problems. No matter how you research, you can end up with the kid with the rare life-threatening complication that has your transplant team making calls across the country looking for information.

Having spent 11 years going through it, believe me, there is a point when it isn't worth putting a child through all the bloodwork, follow-up testing, hospitalizations. Chicken pox is now life-threatening, as is Ebstein-Barr. Mono could kill your kid, slowly, by causing post transplant lymphoproliferative disorder. All the transplant meds kill your kidneys slowly, which is particularly ironic for kidney recipients. Many heart and liver recipients end up needing kidneys later. I've seen that point where it's no longer worth it with my own son, and with other kids. Parents hate to admit it, but there is a point when it's better to let a child go.

Being in Philly, they can easily get second opinions from two other pediatric kidney transplant programs less than 30 minutes from CHOP. If CHOP is wrong about this particular child, St Chris or DuPont (or both) will list her. If two or three say it isn't in her best interests to be listed, then there's probably good reason.

And I'm a bit reluctant to point this out, but it's overdramatization when the parents say this child has no future without a kidney transplant. People have lived well over 20 years on dialysis, and it can be done at home overnight for some people.

She's 6 months to a year from the point where she'd need dialysis or qualify to be listed - the parents have plenty of time to find a transplant team that will work with them. I would not want to spend years dealing with a transplant team that I had an adversarial relationship with. That's going to go badly for everyone. You will spend countless hours with your transplant team, talking to them evenings and weekends. You want a doc who's going to turn his sailboat around and come back to Philly for you (like our pediatric cardiologist did for a different patient) not one who is ticked because you bludgeoned him with the media into doing what you want.

I've rambled on far too long...

Dana said...

CDM-I hear you.

Just so you know, I don't know this family. There's a part of me that is (sincerely) hoping that there is more to this story than meets the eye . . . because if not, well, it's just terrible.

I'm happy to sign my name and spread the word. And I'm very interested to watch what happens next.

(And believe me, if this turns out to be a big hoax, I will happily post about how I was duped into falling for this story and this doctor didn't really say anything wrong at all. That would probably be the best possible outcome here. I don't mind eating my words.)

Ingrid Rosen Burnside said...


lisa said...

seriously hoping there is more to this story. signed and passed the link along.

Hannah said...

I do know this family, I have met Mia a couple of times as my daughter has the same genetic syndrome. This story is the truth, the whole truth and nothing but the truth. These parents were not even given the chance to discuss the implications of a transplant because they were denied the chance to even consider it. The story that Chrissy wrote, accounting their day on Tuesday, is exactly how it happened, and it is appalling, disgusting even that a hospital would not even give the parents of the child with special needs the right to make the decision, based solely on the fact that Mia has mental retardation. Other children with Wolf Hirschhorn syndrome have has kidney transplants at other hospitals and they continue to live healthy, happy lives. This is a policy that CHOP is following. Please sign the petition, Mia needs your support.

Aurit said...

What's going on in this world? This is a human being, a child of GOD. Being mentally ill is irrelevant. Please give her another chance to live.

Anna said...

Hi, as another mother of a child with Wolf-Hirschhorn Syndrome I want to thank you for posting about this. I hope you don't mind, I have posted a link on my blog.

Anonymous said...

While I don't know the particulars and can only speculate as to why the doctor(s) made this decision, I can't fault them or the hospital, as well as I can't fault the parents to fight for their childs life. As a parent myself, I couldn't imagine having a doctor tell me that there is nothing they can or will do to help save my child. However, in responce to Aurit, yes she is a child of God no matter how you look at it. would you willingly make another person live a pained life just to prolong their life? I know from personal experience that a parent having to bury their own child should never happen, but unfortunately it happens and it's a fact of life, just like war, birth, disabilities, and yes even hate. Without hate could we know love? Without lose could we appreciate what we have? Without death could we really live? While it hits the heart hard that this young child could be taken from the world before she could be given the chance to live a life fit for a king or commoner, I ask would it be right to make her live a life full of physical pain and misery? I don't know what would be harder for me, accepting that my child could likely die at a very young age and miss out on so much of the world or living life dependant on a machine or weekly doctor visits and more pills and meds that most will use in a full lifetime. I feel for her parents because no matter which way it goes they are ones that will have to learn to live with whatever decision is made on their childs transplant.

and I've rambled for far to long just wanted to voice my opinion. God bless this child and watch over her whatever happens it is after all your plan that put us here and your plan as to how long and under what conditions that we pass

Annie said...

Dana. I just don't think this is the whole story. Children with this condition can have many issue other than cogntiive delays including heart defects that would make them inelligible for a transplant. I am hoping this is a case of miscommunication or a very understandable desperation on the part of the parents that made them tell their story this way.

lisa said...

anonymous, i might be missing something but nowhere in any of the posts i saw did it say that the child was in "pain or misery" as you mentioned. can you please point out where this is mentioned? or is this just a judgement that you are making?

lisa said...

i went back and re-read the article and it did not say anything about "pain and misery." i am hoping that there is more to the story, and i realize that there is a lot to consider when it comes to who is a good candidate for a transplant. i signed the petition because i refuse to accept that the label "mental retardation" could stand in the way of a life saving operation.

and if the reason to decline the surgery is because of anticipated medical complications, then going forward i would hope that the hospital will more clearly state all of those medically based reasons to the family and NOT just label it a quality of life issue.

Anonymous said...

I'll stand up but not on the side of this slanted story!
I have personally observed surgeries at CHOP for 6 years now and they are always performing procedures on children with mental disabilities! I see it every week! The staff at CHOP suffer and shed tears over these patients! I see it myself. Does that sound like a hospital that would make that kind of callous decision?
There are other things coming into play that we will never know because of HIPAA.
I don't blame the parents for doing anything they have to do to save their child's life. But it is disgusting to me that they are using the media and twisting the truth to bully their way into trying to get it done! That is wrong too!
Go to a different children's hospital and if they're telling the whole truth, they will have no problems getting her on a list for the transplant.
It may not be what you wanted to read, but it is the truth!
It is a truth I see every week!

Dana said...

Anonymous, feel free to stand up on any side you'd like. Hopefully this will hit mainstream media this week and the story will be made clear. Like I've (repeatedly) said, I truly hope there is more to this story.

Dana said...

I deleted a comment here that was kind of personally aggressive to me. Polite debate is welcome, name calling is not.

rebecca said...

as Dana said earlier, i'd rather sign a petition only to later find that i w as mistaken than not sign it only to later find that my signature could've made a difference to's unfortunate that people need to hide behind the anonymity of their computers and hurl unkind remarks instead of engaging in polite debate, you know, like a grown-up.....thank you for sharing this story, dana!

debi9kids said...

I feel the same way... this child's mental disability should not even have come into question.
IF the doctors had said "he heart can't withstand the surgery" or "due to seizure activity in her brain" etc... I could understand.

I sure hope there is more to this story.

CompatibleWithJoy said...

Like many others, I would be thrilled to post a recant of my vent session yesterday. But that said, I know many parents who's children have been denied medical care based on the "quality of life" issue. Basic things like, oh, oxygen, and lasix, short term, for wet lungs. Kids like my son with trisomy 18 are supposed to be "incompatible with life" so why try? Well, try because they are human beings, filled with love.

I, too, saw this popping up on several newsfeed types, and just didn't click on it because I also sometimes need a "medically fragile world break". But when your post came through my email, I read it. Then read again. Then got angry, looked further, and posted not only on CHOPs site, but both my facebooks and my blog.

While I understand there are a multitude of factors that go into transplants, I don't believe a doctor, or team of doctors, have the right to comment on quality of life. That is up to the people who live day and and day out with a child, the ones who really know what life is truly like with and for them. Not someone who has spent a few minutes at a time with them. Yeah, ranting again. sorry.

Andrea S. said...

Thank you for blogging on this. Like others, I would rather join the campaign and find out later that the story we hear is different from the real story than pass over and decline an opportunity to make a difference in someone's life.

Even if the media covers this and the whole world ends up saying that the hospital's decision was right after all (for other reasons not related to the child's intellectual disability) I think talking about this case can still be a valuable way of opening up dialogue about the way that society perceives the lives of those of us who have disabilities--the way that people often assume that having a disability somehow diminishes a person's capacity to enjoy life.

There is an excellent organization, "Not Dead Yet," that campaigns on educating medical personnel and the general public that, YES, the lives of people with disabilities ARE very much worth living. I encourage people here to visit their blog site at