Mentally challenged girl "rejected" for transplant

[Tenbatsuzen]

So here's a situation.

A 3-year old with Wolf-Hirschorn Syndrome will be in need of a kidney transplant in approximately a year.

She is being treated at Children's Hospital of Philadelphia, which is one of the top children's hospitals in the country.

Her parents have a bad experience with one of the doctors and a social worker, which is documented here, blogged by the mother:

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

Long story short, the doctor says a mentally retarded child does not qualify for a kidney transplant even if it comes from the family. It mainly stems from quality of care, especially after the parents die (if she survives that long)

Now all shit breaks loose and the hospital is in a PR nightmare.

The hospital's response is as follows:


We hear you.

We feel and understand your frustration, but we are unable to comment publicly on individual cases.

Each child is unique, and our goal is always to provide the best possible medical care for each individual patient.

Please know that CHOP strives to partner with families and make appropriate decisions based on input from many sources, none more important than the patient’s family.

Anything less would be completely inconsistent with the values we work to uphold every day.

We are also taking action to review all existing policies to make sure that they reflect the core values we live by, including our deep commitment to not discriminate in any way.

The Children’s Hospital of Philadelphia is an institution. But more important, we are a team of men and women whose life’s work and greatest passion are the care of all sick children and the support of their families. To be entrusted with the care of these children is a privilege, one we take with the utmost seriousness.


Personally, this is what I'm seeing:

1) The mother wrote that blog post with every intention to publicly blackmail CHOP into giving the child the transplant. There is absolutely no doubt in my mind, with the way it's written.

2) As a parent, if one hospital is not giving me the quality of service, then I would go to a different hospital.

3) Personally, I think the mother is handling this extremely badly and I think the blog is wildly exaggerated to try and get a response from the soccer mom crowd.

Thoughts?

[furie]

i think that if another family member wants to give her one of their kidenys hen that's fine. But I can understand why some would not want her on the transplant lists.

[Tenbatsuzen]

i think that if another family member wants to give her one of their kidenys hen that's fine. But I can understand why some would not want her on the transplant lists.

That part I am fine with too. If she gets the transplant from her own family, fine. But the hospital raises valid concerns given the fact that she's mentally challenged, will have to take immuno-suppresors for the rest of her life, will need ANOTHER kidney down the road, and how she will be taken care of when she outlives her parents.

It is a horrifically sticky situation made worse by the fact that the mother is trying to stir up as much shit as possible.

[Chigworthy]

That part I am fine with too. If she gets the transplant from her own family, fine. But the hospital raises valid concerns given the fact that she's mentally challenged, will have to take immuno-suppresors for the rest of her life, will need ANOTHER kidney down the road, and how she will be taken care of when she outlives her parents.

It is a horrifically sticky situation made worse by the fact that the mother is trying to stir up as much shit as possible.

I can't fault the family for fighting for their child's life. But unfortunately we have become such an emotional drama-driven culture, many people will take whatever the family says as truth because it makes a good story. Just like everyone getting all righteous about Beyonce buying a hospital wing or whatever the fuck that was. A hospital is a business; they don't owe us anything as long as they comply with the law.

[Tenbatsuzen]

The other thing about this is that the girl doesn't even NEED the transplant right now. They had an initial meeting to discuss options down the road. And CHOP didn't even reject the transplant, they had a doctor tell the parents that given a vote, he'd vote "no". There's a difference.