Hospital denies life saving transplant to child because of special needs

This was posted yesterday but closed because it linked to a blog post instead of a news article. It’s hit the news now. An adorable 3-yr-old girl named Amelia has 6-12 months to live if she doesn’t get a new kidney. Her family isn’t asking for a donor kidney, but is giving one themselves. They just need a surgeon to do her surgery.

The Children’s Hospital of Philadelphia kidney transplant doctor refuses to do her surgery because the girl has an intellectual disability. He says she won’t have any “quality of life” to have to continue living with “mental retardation” so he’d rather she just die. The doctor then berated the mother for her and her family loving the little girl and being informed and involved in her care.

The hospital put a press release out on their facebook page. It’s mumbo-jumbo lawyer talk which says that it wasn’t just because she has an intellectual disability, but also because she won’t live independently when she’s an adult. In other words, it is just because of her lower IQ. The American Journal of Transplantation directly refutes this as a basis for denying transplants, which I’ll post as a follow-up.

Two more women have come forward saying the same hospital discriminated against others in the same way.

“We were told that at CHOP that our daughter would not be eligible for a liver transplant because of cognitive impairment and because she would not achieve ‘independent living’ - those were the reasons given. Not medical ones, but ones based on value-judgements regarding intellectual disability.”

“I might be willing to think there is some other reason behind Amelia’s denial if I didn’t know another family that was told something very similar recently. Spin PR all you want to, but please think seriously about revising your policies.”

News Article: examiner.com/special-needs-kids-in-nashville/hospital-denies-life-saving-transplant-to-child-because-of-special-needs

Mom’s Story: wolfhirschhorn.org/2012/01/amelia/brick-walls/

A Petition: change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive

The Hospital’s Facebook: facebook.com/ChildrensHospitalofPhiladelphia

A woman on facebook found this and posted it to the hospital’s page there.

From American Journal of Transplantation 2010; 10: 727–730
siblings.it/dasapere/ritardo_mentale.pdf

N. Panocchiaa,*, M. Bossolaa
Hemodialysis Service, Department of Surgery, Catholic University, Rome, Italy
and G. Vivanti, Department of Psychiatry and Behavioral Sciences,
University of California, Davis, CA
*Corresponding author: N. Panocchia, npanocchia@alice.it

Excerpted from “Transplantation and Mental Retardation: What Is the Meaning of a Discrimination?”

"Why patients with MR are usually excluded from access to transplantation

The following four arguments are usually reasons why patients with MR are excluded from solid-organ transplantation:

  1. Reduced life expectancy. This is a belief and not a reality. It is well known that 80% of people affected by Down syndrome live 50 years or more (in 1929, the life expectancy in the population was 9 years). In any case, since worldwide patients aged more than 65 years may be candidate to transplantation, such argument falls short.
  1. Reduced or absent cognitive skill to comply with complex posttransplant, antirejection medication regimens. This is true, but compliance is increased by family and social support, as reported in the above-mentioned studies. Moreover, according to this argument children without MR should not be eligible to solid-organ transplantation. In addition, with regard to renal transplantation, how is it possible to assume that an end-stage renal disease patient, who is compliant to hemodialysis, will not be compliant to renal transplantation procedures?
  1. Inability to understand the process of transplantation. If we accept this argument, patients with MR should not receive any kind of therapy or medical treatment at all. The same is true for young children without MR.
  1. Lack of improvement of quality of life. It is usually accepted that transplantation should be reserved for those patients who aremore likely to benefit in terms of quality of life. Indeed, a recent Japanese study involving 25 patients with MR who underwent renal transplantation reported that all persons providing primary support for patients were satisfied with the transplant and believed that quality of life was improved in both transplant recipients and themselves (22).

Nevertheless, it has been suggested that caregivers should prioritize quality of health over quality of life. In fact, from a medical ethics standpoint the issue of quality of health is more relevant than that of quality of life, as health is the primary goal of medical care (23). As highlighted by Spagnolo, all human lives must be considered of the same value from an ontological standpoint. Ontology, the study of the being, holds that life is a supreme good that cannot be measured and consequently cannot be graded. On the opposite, health can be assessed and graded. Physicians are constantly establishing whether the health of their patient is improving or declining. However, the value of human life cannot be measured, and is not determined by the quality of an individual’s life at a particular time point (23)."

siblings.it/dasapere/ritardo_mentale.pdf

I have reservations about transplants in general, partly because there are factors to be considered other than medical need. In effect, there has to be some discriminatory picking and choosing since we can’t (in terms of cost and organ availability) transplant everyone who needs it.

However, I don’t see that a disability disqualifies a person from receiving one. From my perspective, if the child is always going to need care that makes her a better candidate, since someone will always be responsible to see that her meds are taken.

Quality of life is impossible to fully assess in someone who is unable to communicate meaningfully, therefore it must necessarily be a subjective judgment. Withholding intervention based on QOL is something that I find very problematic because some people and systems are naturally prejudiced against those who are weak, elderly, different etc.

The simple fact is the hospital is now assuming the power of life and death. It is taking the authority away from God. At this point, they, humans, are making the decision of who lives and who dies.

That’s what modern medicine does. It tries to control life and death. And when resources are limited they have to use them on the people that will benefit the most. That’s why an 18 year old comes before an 80 year old, and an 18 year old who has a good chance of recovering with a transplant will come before one who’s chances are slim. And that really is how it should be. In war zones medics jump over those too far injured to save to get to those who have a chance.

If God really is all powerful, then a doctor won’t be taking his authority.

That being said this little girl should get the kidney, especially since its a family donation.

This doesn’t address her circumstance at all. The doctors don’t have limited resources that they’re allocating to someone healthier instead of her. The child has a family donor. She just needs a surgeon.

Edit: Your second post came in after I started mine. :thumbsup:

That’s called triage. It prioritizes those who can be saved over those who are unlikely to be saved if there simply is no way to address all critically ill/injured patients simultanously. If you have the resources to save only one of two people, prioritise the one who is likely to make it if both are in terrible shape, instead of doing little for both and letting both die. It’s pragmatism in the face of limited resources. However in this case I don’t think the resources are so limited. In this case it’s an arbitrary value judgement with no basis beyond currently fashionable trends. Of course perhaps the hospital is letting other children die all the time through lack of resources and then a kidney transplant could be used to save thousands of those dying children. I don’t think that’s the case either.

If God really is all powerful, then a doctor won’t be taking his authority.

God is Being Itself. Hence the physician works through God as the physician and his set of skills and equipment all depend on God at every nanosecond. If God is not, there would be nothing (no existence), no patient to fix.

Not surprising. When my child was born with Down Syndrome the hospital offered to starve him to death for us (and typing this nearly makes me want to vomit!).

The “nice” doctor (a pediatrician dedicated to helping children!!!)) offered to feed him on demand and to sedate him so he wouldn’t feel pain.

He told me that newborns with downs wouldn’t demand food, and that he would slip away and that we would be able to go on and have a healthy family, since this child would be a burden to us.

This child is right now baking muffins with his mom in the kitchen, and I’m trying (unsuccessfully) not to cry so that they don’t ask me what the problem is.

Denying because the child has special needs is discrimination. The parents are donating one of their OWN kidneys;…and the doctors don’t want to do the surgery?

This is wrong…just wrong…and its not like the kidney is being taken from a person on life support who is at death’s door.

So, how many doctors deny surgery to children with downs syndrome? With cerebral palsy?

Every life has worth, even this little girl’s!

Dude, I empathize with you (having to have heard that doc’s suggestion). God bless you and your family.

Your post just brought tears to my eyes. God bless your family!

Sorry: I wasn’t trying to be all emotional. I just wanted to point out from my own experience that this type of thing is common, rather than a one-off.

BTW: here are the muffins!

https://fbcdn-sphotos-a.akamaihd.net/hphotos-ak-ash4/s320x320/380059_10151178524415601_858160600_22779270_1326927586_n.jpg

Yummy! And bless your family, btw!:slight_smile:

No need to apologize - they were appreciative tears. The world needs more parents like you…and more muffins if you ask me! :slight_smile:

A fruit of the culture of death this is. We’ve been warned about this stuff before, and did we listen? Nope, nobody wanted to believe it could happen here.

But, now it is happening. In some states euthenasia is legal, and now we have this. Pray, pray hard, not only for the family and the girl, but for God to have mercy on us!

And things are bound to get worse - because the states (Rod Blagojevich in Illinois, Christine Gregoire in Washington), and the federal government (Kathleen Sebelius in Barack Obama’s administration) are messing with the doctors and pharmacists, legally imposing immoral stuff. See the mandate that pharmacists carry and dispense abortive and contraceptive drugs, elimination of conscience protection laws. That means, state and federal governments are rewarding the immoral murderous professionals and punishing the pro-life ones, to the point of pushing them out of business. If Obama gets four more years and if the Dems get the majority in congress, they will push this pro-death agenda so far that healthcare will never be the same again.

Sure they have a family doner. The doner is doing so specifically for the little girl. It isn’t that he or she is donating because they feel like surgery might be fun. It isn’t an organ that would be available for anyone else.

Maybe the family should go abroad to find a doctor who will operate.

The hospital was hoping everything would blow over during the long weekend. They ignored all of the messages, which kept piling up. The petition has over 16,000 signatures right now.

yourlife.usatoday.com/parenting-family/special-needs/story/2012-01-16/Team-Amelia-backs-transplant-for-special-needs-child/52603482/1
All the attention appears to have had an impact: Chrissy Rivera said Monday that she and her husband have been invited back to the hospital to discuss a transplant.

huffingtonpost.com/lisa-belkin/denying-transplant_b_1207630.html
Just before I called Sunday night, she said, she’d spoken to the hospital and had gotten word that a transplant for Amelia could in fact be approved there – with a living designating donor. The Riveras are relieved, Chrissy said, but also angered by what they have heard these past few days from other families who have been told “your child can not receive a transplant because of cognitive disabilities.”

Their growing number of supporters are still angry, too, and posts continue to fill Facebook and #TeamAmelia, raging against a medical system that critics see as treating those with special needs as less worthy of saving.

The facebook page is so covered in comments that the hospital closed their wall and put up a statement.

To our Facebook community:

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.

What does this have to do with Sebelius and Obama? This is about a disabled child whose parents are trying to save her life. Is nothing safe from divisive politics? Similar things have happened under other administrations, or have you forgotten Terri Schiavio?

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