Miel et Lait - Latest Comments

Re: It’s Monday! What are you reading?

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Re: It’s Monday! What are you reading?

Burberry bags on sale — Wed, 18 Apr 2012 02:27:34 -0000

Thanks your suggestion.

Re: It’s Monday! What are you reading?

whatsheread — Wed, 25 Jan 2012 21:35:51 -0000

A RELIABLE WIFE is a great book. I hope you enjoy it!

Re: It’s Monday! What are you reading?

lucilleinthesky — Tue, 24 Jan 2012 11:19:56 -0000

A visit from the goon squad by Jennifer Egan. She's coming to town next week and I'm thinking of going to see her speak, so i thought I should read her book first!

Re: It’s Monday! What are you reading?

Mrs. Q: Book Addict — Tue, 24 Jan 2012 09:40:20 -0000

I loved, loved Best Kept Secret! A Reliable Wife is on my wish list. Happy reading!

Re: It’s Monday! What are you reading?

Mystica — Mon, 23 Jan 2012 23:43:50 -0000

A Reliable Wife was not a good read for me. Hope you do better with it. Thanks for visiting my blog.

Re: It’s Monday! What are you reading?

JLS Hall — Mon, 23 Jan 2012 22:27:06 -0000

I have A Reliable Wife on my TBR list. The others are new to me -- I love finding new books to check out!
Happy reading this week!

Re: It’s Monday! What are you reading?

Joy Weese Moll — Mon, 23 Jan 2012 20:02:29 -0000

I read Best Kept Secret awhile ago, thanks for the info on the book discussion.

Re: Amelia Rivera: The rebuttal

MommaKiss — Wed, 18 Jan 2012 14:25:21 -0000

Oh, and I'm an organ donor. And on the bone marrow registry, too - ya know, in case someone needs mine :)

Re: Amelia Rivera: The rebuttal

MommaKiss — Wed, 18 Jan 2012 14:24:41 -0000

Been reading about this little girl, and her story was on the cover of Yahoo today!

Re: Amelia Rivera: The rebuttal

Miel_et_Lait — Tue, 17 Jan 2012 23:22:55 -0000

Claiming that CHOP "caved" further demonstrates your ignorance & vigilantism. In the original blog post by Amelia's mom, the doctor said the next step would be to have the transplant team reevaluate Amelia's candidacy and get back to her. (According to her, the doctor was not changing his recommendation.)

Re: Amelia Rivera: The rebuttal

Miel_et_Lait — Tue, 17 Jan 2012 23:18:52 -0000

No matter how much a patient wants a procedure, if a DOCTOR won't perform it, it won't be done.

Re: Amelia Rivera: The rebuttal

ndh — Tue, 17 Jan 2012 23:11:03 -0000

All that explains why kidney transplants have never been done on WH patients. Oh wait, they have? Nevermind. I do agree, though, social media should not be a factor. And it wouldn't be: if CHOP hadn't caved, which it looks like they're doing, I am confident she would have been treated elsewhere by qualified doctors.

Re: Amelia Rivera: The rebuttal

ndh — Tue, 17 Jan 2012 23:09:39 -0000

No. Doctors and patients or their guardians make medical decisions, together. Absent any finite resource limitations such as a true organ waiting list---a limitation that does not apply here---that formula should not change. Besides: I think we'd probably agree that there is at least one qualified doctor in this country who would agree to do the procedure. They've done a kidney transplant on a WH patient at Stanford, for instance. But hey, that's an insignificant hospital with no intellectual credibility, so who knows.

Re: Amelia Rivera: The rebuttal

KC — Tue, 17 Jan 2012 21:46:16 -0000

That may be the case, but still it was CHOP's responsibility to handle this more sensitively and not let Mom leave confused and upset and left to blog it. A lesson for all corporations of the power of the social media.

Re: Amelia Rivera: The rebuttal

Miel_et_Lait — Tue, 17 Jan 2012 21:32:15 -0000

1. Doctors should make medical decisions, not social media.

2. Promoting organ donation is worthwhile.

3. #TeamAmelia is on a witch hunt.

4. It's my blog, and I will address what I want to address.

Re: Amelia Rivera: The rebuttal

R. R. — Tue, 17 Jan 2012 21:17:33 -0000

Yet that's not the focus of your post. You give one short paragraph on why you think--admittedly someone with "no medical training" think--her complex medical needs and kidney complications make her an inappropriate candidate generally. Then you devote two whole paragraphs to the issue of the limited supply of organs available and the fact that she is competing against other--perhaps more appropriate candidate--for the same organ. It's specious to now backtrack and say she wasn't a candidate anyway. If she's not a candidate for medical reasons, why not focus on that, instead of all the focus on the limited supply? The fact is that an inherent argument in your post is that Amelia's candidacy for transplantation is in some way related to how she measures up against other potential candidates. Since that's not really what's going on here, why not admit as much? And if you want to get into the hard stuff, then why not consider whether brain damage or mental disability should ever be considered part of the equation, and if so, to what extent? Or consider an even touchier subject, which is whether another limited resource--money--should be expended to keep a child like Amelia alive?

Instead, your argument essentially goes like this: (1) Experts are the best ones to make this call, not emotional parents. (2) It's a he-said, she-said situation, and I don't trust the mom's version of events. (3) This is a complex situation, and in my own non-expert opinion, I don't think people with chronic kidney conditions should be getting transplants. [Btw, on a very general level--who do you think is getting them, people without kidney problems??] So the decision probably wasn't based on her mental retardation, but on her bad health otherwise. (4) There are too many people who want kidneys and not enough to go around, so people like Amelia won't always make the cut.

As long as your own opinion on #3 is as non-medical as Amelia's parents' and as long as we know #4 doesn't really apply, then why not admit as much and just leave it at numbers 1 and 2, and add an update to your argument acknowledging that the whole supply-demand issue is irrelevant here and actually has no bearing on whether she is a candidate to receive an organ? And while you're at it, why not make even more clear that your whole argument #3 is more or less stating that you don't think her MR was a reason for her ineligibility? Because that's kind of what you imply, by not touching on the issue and only going into other elements of her disorder. Unless, of course, you want to be brave and touch on the issue of whether it should play into the decision--but then you might have to consider whether, in such a values-laden decision, the public's morals might actually play a relevant role.

Re: Amelia Rivera: The rebuttal

Rebecca R. — Tue, 17 Jan 2012 21:16:30 -0000

Re: Amelia Rivera: The rebuttal

Miel_et_Lait — Tue, 17 Jan 2012 20:58:12 -0000

All due respect, the mom -- who must have been beside herself with confusion & hurt & emotions no mom should have to go thru -- reported that "the dr said mental retardation." I am not blaming the mom, nor do I think the mom maliciously put words in the Dr's mouth. I am considering the possibility that the mom might have misheard the Dr, or accidentally paraphrased him. I am not going on a witch hunt for a doctor.

Re: Amelia Rivera: The rebuttal

KC — Tue, 17 Jan 2012 20:51:17 -0000

The reason this is getting so much attention is because CHOP denied the transplant based solely on "mental retardation" and not her genetic condition. That was a major screw up that yes, the PR department, now has to remediate. It scared the hell out of everyone who has a special needs child with varying degrees of "intellectual disability" from Autism to Down's Syndrome.

Re: Amelia Rivera: The rebuttal

Miel_et_Lait — Tue, 17 Jan 2012 20:43:21 -0000

The first step, before a patient is even on the transplant list, is to determine if the patient is a candidate for a transplant. From what is known about Amelia's chromosomal disorder, chronic kidney failure is a likely side effect. Additionally, (as I've just learned) the medicines she would be prescribed for Wolf-Hirschhorn syndrome, are contra indicated with the immuno suppressants that are necessary to ensure a transplanted organ isn't rejected.

I am not saying that all patients with WH are automatically disqualified, but her doctors determined that based on her specific health status, she is not a candidate.

This is being twisted into a "discriminate against the children with special needs" story, which it isn't.

Also, I completely disagree with medical decisions being made by social media. Amelia deserves the best care she can get, and it's my opinion that her DOCTORS are most qualified to make those decisions, not vigilantes on a witch hunt.

Re: Amelia Rivera: The rebuttal

ndh — Tue, 17 Jan 2012 20:19:21 -0000

Again, just to be clear: I understand the necessary triage that must occur when dealing with patients on the donor organ waiting list. But that's not an issue here, but you tried to make it so.

Re: Amelia Rivera: The rebuttal

ndh — Tue, 17 Jan 2012 20:17:00 -0000

If you knew that, then why bother quoting statistics about the length of the donor list, since they are irrelevant?

Besides: she would not be the first person with Wolf-Hirschorn to receive a kidney transplant; and the hospital itself is now inviting them back to discuss a family donor transplant. So maybe the issue isn't the fact that doctors have ruled out the operation, rather that that one doctor did.

Re: Amelia Rivera: The rebuttal

Miel_et_Lait — Tue, 17 Jan 2012 19:18:15 -0000

Thank you! It bothers me that some opportunists are twisting this into a discrimination case, when it clearly is not.

Re: Amelia Rivera: The rebuttal

Miel_et_Lait — Tue, 17 Jan 2012 19:17:28 -0000

Thank you for pointing out that a CHILD MOLESTER received a kidney, as it proves the point that the decision to perform a transplant has nothing to do with how "good" or "bad" a person is, it has nothing to do with the patient's contribution to society (or lack thereof). Transplants are purely based on the facts of medicine- sadly, Amelia's condition (ie, chronic kidney failure) does not make her a good candidate for the transplant. It has NOTHING to do with being "special needs" nor is it discriminating against her "special needs."