itsheresomewhere Posted January 14, 2012 Share Posted January 14, 2012 :glare:This story is big on another forum I read. http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/ Â If it was my child I can't tell you what I might have said or done but severe screaming and contacting the media would have been involved. While I guess I can (very tiny) see the hospital's point with the shortage of organs and stuff. Still for a doctor to say that, just wow. Â Â Disclaimer: I don't agree with the term mentally retarded. Quote Link to comment Share on other sites More sharing options...
Myeightkiddies Posted January 14, 2012 Share Posted January 14, 2012 Ok..tears. Â My heart and prayers go out to that family. Quote Link to comment Share on other sites More sharing options...
mommaduck Posted January 14, 2012 Share Posted January 14, 2012 nm...got it Quote Link to comment Share on other sites More sharing options...
Excelsior! Academy Posted January 14, 2012 Share Posted January 14, 2012 That is horrific! I pray that the decision makers for their health have more mercy than them. Quote Link to comment Share on other sites More sharing options...
HeatherL Posted January 14, 2012 Share Posted January 14, 2012 Wow... just wow :crying: My heart goes out to that family. Quote Link to comment Share on other sites More sharing options...
itsheresomewhere Posted January 14, 2012 Author Share Posted January 14, 2012 Ok..tears. My heart and prayers go out to that family.  I know. Just makes you want to reach through the monitor and hug them. Quote Link to comment Share on other sites More sharing options...
********* Posted January 14, 2012 Share Posted January 14, 2012 Oh. My. Word. Â That's just disgusting. Â I've shared on here before about how I donated a kidney to my sister. Shortly after the transplant, her husband divorced her. This caused her to go into clinical depression, and she quit taking all her meds. Her body attacked and killed the kidney I gave her. Â Our transplant was at U of M. They were not willing to do another transplant for her. She ended up on dialysis for quite some time while she looked for another hospital. Eventually, she was able to convince the team at U of M to give her another chance, after she was on dialysis for a few years, went to therapy, kept on top of her meds/doctors appts, etc. She got another chance, and got a cadaver donor kidney. Â If the medical community would give my sister another chance after intentionally killing the kidney I gave her, there is NO reason why this precious little girl shouldn't get a chance, too. Â I'm pray her parents find another team at another hospital who have better judgement. In fact, I think I'm going to click around the blog and see if there's a way I can contact the mom and tell her my sister's story. I know there's a children's hospital at U of M... Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted January 14, 2012 Share Posted January 14, 2012 :glare:This story is big on another forum I read. http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/ Â If it was my child I can't tell you what I might have said or done but severe screaming and contacting the media would have been involved. While I guess I can (very tiny) see the hospital's point with the shortage of organs and stuff. Still for a doctor to say that, just wow. Â Â Disclaimer: I don't agree with the term mentally retarded. Â No shortage of organs--someone in the family was planning to donate. This is outrageous. Â Do you know the parent at all? Was she a regular poster at the other forum? Could there be another side to the story? Quote Link to comment Share on other sites More sharing options...
itsheresomewhere Posted January 14, 2012 Author Share Posted January 14, 2012 No shortage of organs--someone in the family was planning to donate. This is outrageous. Â Do you know the parent at all? Was she a regular poster at the other forum? Could there be another side to the story? Â No I don't know the parent. It was on a special needs blog and then via google saw it on a more mainstream blog. The one who posted it has a child with a rare disorder and is very involved in rare disorders. Quote Link to comment Share on other sites More sharing options...
mommaduck Posted January 14, 2012 Share Posted January 14, 2012 Sounds to me that this Dr has his own agenda and biases that he's pushing (social worker as well). The parents are "warned about" because they have been advocating for their daughter's health?! I'm disgusted that this is happening in my own back yard. Sigh. I wonder if they would have better luck at the hospital in Baltimore? Quote Link to comment Share on other sites More sharing options...
peachskittles Posted January 14, 2012 Share Posted January 14, 2012 I found the facebook page for the hospital.  "We have watched with great concern the comments regarding criteria used in making transplant eligibility decisions. We understand your concerns and reactions to the Facebook postings.  We strive to provide the safest possible care for our patients and we make transplant eligibility decisions based on widely-accepted, medically valid methods, with many factors considered. We want you to know that... CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status. Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities and impairments.  CHOPĂ¢â‚¬â„¢s transplant programs continue to evaluate and perform transplants on some of the most complex cases in the country. We use an established framework for consistent evaluation and transplantation. Each child is evaluated on an individual basis, taking multiple medical, surgical, and psychosocial aspects into consideration. In each evaluation, we consider the possible risk and outcome of the recipient, potential donor options, as well as alternative therapies.  In order to determine eligibility for transplantation, a multidisciplinary evaluation is completed by several members of the transplant team, which would include careful assessment of a patient by surgical and transplant specialists, as well as, psychosocial, and neurologic specialists. Parents and family members are very much a part of the discussion.  We wish to emphasize that all determinations of eligibility for transplantation are treated on an individual basis. We make all decisions regarding eligibility using a non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country.  These communications are very important to us and provide us with an opportunity to always re-examine and reassess our approach and process. We hope that we can continue to improve and continue to provide exceptional care for children with organ failure."  http://www.facebook.com/ChildrensHospitalofPhiladelphia Quote Link to comment Share on other sites More sharing options...
Impish Posted January 14, 2012 Share Posted January 14, 2012 This is insane. Â So, they've determined that the child is less worthy on the basis of IQ. Â So does every potential organ transplant patient require an IQ test? Â They've announced that b/c of her disability, she's not as valuable, as worthwhile, as important as an NT child. Â I'd be calling the press. Quote Link to comment Share on other sites More sharing options...
TXBeth Posted January 14, 2012 Share Posted January 14, 2012 This is insane. So, they've determined that the child is less worthy on the basis of IQ.  So does every potential organ transplant patient require an IQ test?  They've announced that b/c of her disability, she's not as valuable, as worthwhile, as important as an NT child.  I'd be calling the press.  Well it looks like according to the hospital she was denied for other reasons, but the parents claim it was because of her disability. We don't really know which is true. Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted January 14, 2012 Share Posted January 14, 2012 Well it looks like according to the hospital she was denied for other reasons, but the parents claim it was because of her disability. We don't really know which is true. Â Where do you see that, Beth? I was wondering the same thing--if there was another side. Because if there is no other side, I'm going to post it on my Facebook, etc. and help spread the word, but sometimes there is more to the story... Quote Link to comment Share on other sites More sharing options...
itsheresomewhere Posted January 14, 2012 Author Share Posted January 14, 2012 I found the facebook page for the hospital. "We have watched with great concern the comments regarding criteria used in making transplant eligibility decisions. We understand your concerns and reactions to the Facebook postings.  We strive to provide the safest possible care for our patients and we make transplant eligibility decisions based on widely-accepted, medically valid methods, with many factors considered. We want you to know that... CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status. Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities and impairments.  CHOPĂ¢â‚¬â„¢s transplant programs continue to evaluate and perform transplants on some of the most complex cases in the country. We use an established framework for consistent evaluation and transplantation. Each child is evaluated on an individual basis, taking multiple medical, surgical, and psychosocial aspects into consideration. In each evaluation, we consider the possible risk and outcome of the recipient, potential donor options, as well as alternative therapies.  In order to determine eligibility for transplantation, a multidisciplinary evaluation is completed by several members of the transplant team, which would include careful assessment of a patient by surgical and transplant specialists, as well as, psychosocial, and neurologic specialists. Parents and family members are very much a part of the discussion.  We wish to emphasize that all determinations of eligibility for transplantation are treated on an individual basis. We make all decisions regarding eligibility using a non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country.  These communications are very important to us and provide us with an opportunity to always re-examine and reassess our approach and process. We hope that we can continue to improve and continue to provide exceptional care for children with organ failure."  http://www.facebook.com/ChildrensHospitalofPhiladelphia   Not that I am doubting there statement, but sounds like typical PR. Interestingly, up until the early 90's you could be denied a transplant for moderate mental retardation. Still though, it would interesting to hear the other side. The comment about being warned about them just strikes me. That I can believe was said. I do want to know, if her kidney doc knew they would not approve her. I kinda get an impression that she might not have known. Quote Link to comment Share on other sites More sharing options...
mommaduck Posted January 14, 2012 Share Posted January 14, 2012 Well it looks like according to the hospital she was denied for other reasons, but the parents claim it was because of her disability. We don't really know which is true. It seems that this is what the hospital is implying and, by law, they cannot tell their side of the story. However, this also protects the hospital if the parents are accurate in their description of events. Honestly, there are doctors that believe this way though. I feel terrible for the parents and personally think they should get an attorney involved. Quote Link to comment Share on other sites More sharing options...
Mommyof4ks Posted January 14, 2012 Share Posted January 14, 2012 Well it looks like according to the hospital she was denied for other reasons, but the parents claim it was because of her disability. We don't really know which is true. Â :iagree: I know people have claimed they were discriminated against based on health, religion, gender, and so on, but there was more to the story. I cannot imagine that a transplant would be denied based on her mental capacity. I know kids who recieved transplants knowing that they had very little chance of survival, so 'wasting' an organ on them would be no different. Quote Link to comment Share on other sites More sharing options...
catz Posted January 14, 2012 Share Posted January 14, 2012 :iagree: I know people have claimed they were discriminated against based on health, religion, gender, and so on, but there was more to the story. I cannot imagine that a transplant would be denied based on her mental capacity. I know kids who recieved transplants knowing that they had very little chance of survival, so 'wasting' an organ on them would be no different. Â :iagree: My heart breaks for this family, but there are other families who have posted their cognitively impaired kids HAVE gotten transplants at CHOP. I don't want to cut and paste others words, but there's one at the top of CHOPs FB page now. I hope there's more to the story. If there is not and this is one doctor's vendetta, it will quickly come out. I hope the family can have her seen by another transplant team. I think it's extremely difficult to know the facts in these kind of cases based on a clearly (and justifiably) emotional post by an anguished parent. Quote Link to comment Share on other sites More sharing options...
Heather in OK Posted January 14, 2012 Share Posted January 14, 2012 If her account of the conversation is the truth... Â Wow!! I know I would not have the clarity of mind to speak that way to the doctor! I would just be a blubbery mess. Â Praying for this family. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 14, 2012 Share Posted January 14, 2012 My nephew who has Down's Syndrome was not denied a heart transplant. This doesn't happen everywhere. I feel very badly for that family and hope that they find another hospital that will do the surgery. Quote Link to comment Share on other sites More sharing options...
jhschool Posted January 14, 2012 Share Posted January 14, 2012 I don't get why the hospital won't do the transplant. The little girl is just a little girl. What does it matter if her mind is not as advanced as other people's? Â By the way, Hitler sent the Mentally Retarded Germans to special hospitals to be killed. He also did not think that they should live; he didn't think they were as important as other people. To Hitler, and to this doctor, the people with mental retardation are less valuable and therefore should be either killed or left to die. Â I guess we have Nazi practices right here in America. Â I hope the mom and dad gain strength from the support of compassionate people. I hope they realize their little girl is just as important as other children in spite of this Nazi doctor. Â My heart goes out to them. I hope they find a transplant soon for their sweet little girl. And I hope that if I ever have a little kid with mental retardation that I have the strength to fight for him, too. Quote Link to comment Share on other sites More sharing options...
jhschool Posted January 14, 2012 Share Posted January 14, 2012 The statement the hospital printed seems like Public Relations Damage Control. Â It seems the doctor made it very clear why he wouldn't do the transplant for the little girl, even though the family would provide the kidney. Â Very sad. Quote Link to comment Share on other sites More sharing options...
Leav97 Posted January 14, 2012 Share Posted January 14, 2012 I don't get why the hospital won't do the transplant.The little girl is just a little girl. What does it matter if her mind is not as advanced as other people's? Â By the way, Hitler sent the Mentally Retarded Germans to special hospitals to be killed. He also did not think that they should live; he didn't think they were as important as other people. To Hitler, and to this doctor, the people with mental retardation are less valuable and therefore should be either killed or left to die. Â I guess we have Nazi practices right here in America. Â I hope the mom and dad gain strength from the support of compassionate people. I hope they realize their little girl is just as important as other children in spite of this Nazi doctor. Â My heart goes out to them. I hope they find a transplant soon for their sweet little girl. And I hope that if I ever have a little kid with mental retardation that I have the strength to fight for him, too. Â Anyone who references Nazi's automatically looses every argument. Â http://en.wikipedia.org/wiki/Reductio_ad_Hitlerum Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted January 14, 2012 Share Posted January 14, 2012 The blog mentions HIV listed on papers which I think were related to his child's file--in addition to mentally retarded. Could HIV be a disqualifying condition for transplant. Did the child have other conditions, that would have made transplant a problem? The hospital cannot say because that information is confidential. Besides the HIV that is not explained, some children with down syndrome have heart conditions. Â It would be nice to have all the facts but I don't think we can. Â FWIW, I have a dc with down syndrome. I would be freaking out if we were dealing with something life threatening. I also know I'm always on guard to protect my ds from prejudice. I could see the combination would make it difficult for me to get all the facts straight. I hope this woman goes for a second opinion. and no matter what the opinion the physician team exhibits more compassion. Quote Link to comment Share on other sites More sharing options...
Leav97 Posted January 14, 2012 Share Posted January 14, 2012 The blog mentions HIV listed on papers which I think were related to his child's file--in addition to mentally retarded. Could HIV be a disqualifying condition for transplant. Did the child have other conditions, that would have made transplant a problem? The hospital cannot say because that information is confidential. Besides the HIV that is not explained, some children with down syndrome have heart conditions. Â It would be nice to have all the facts but I don't think we can. Â FWIW, I have a dc with down syndrome. I would be freaking out if we were dealing with something life threatening. I also know I'm always on guard to protect my ds from prejudice. I could see the combination would make it difficult for me to get all the facts straight. I hope this woman goes for a second opinion. and no matter what the opinion the physician team exhibits more compassion. Â From my very, very limited knowledge, transplants are just starting to be an option for people that are HIV positive but, their are a lot of additional requirements to make sure the HIV is very well under control. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 14, 2012 Share Posted January 14, 2012 The blog mentions HIV listed on papers which I think were related to his child's file--in addition to mentally retarded. Could HIV be a disqualifying condition for transplant. Did the child have other conditions, that would have made transplant a problem? The hospital cannot say because that information is confidential. Besides the HIV that is not explained, some children with down syndrome have heart conditions. Â It would be nice to have all the facts but I don't think we can. Â FWIW, I have a dc with down syndrome. I would be freaking out if we were dealing with something life threatening. I also know I'm always on guard to protect my ds from prejudice. I could see the combination would make it difficult for me to get all the facts straight. I hope this woman goes for a second opinion. and no matter what the opinion the physician team exhibits more compassion. Â That threw me too but then I read it again and think that what she's saying is that the phrases highlighted in pink on the pre-printed form were "Mental Retardation" and "Brain Damage". Both those terms were under other non-highlighted conditions (Hep C and HIV). BTW - though my nephew did get his new heart, his parents had to promise in writing that they would be monitoring his health for the rest of his life because he is not competent to monitor all the anti-rejection drugs and get himself to the twice yearly appointments. Being able to be in compliance with after transplant protocol is rightly important to the doctors. But I don't see why these doctors couldn't have worked with the parents for the same kind of agreement. Quote Link to comment Share on other sites More sharing options...
Perry Posted January 14, 2012 Share Posted January 14, 2012 From my very, very limited knowledge, transplants are just starting to be an option for people that are HIV positive but, their are a lot of additional requirements to make sure the HIV is very well under control. emedicine HIV infection is no longer an absolute contraindication to kidney transplantation.[3] Many centers will perform kidney transplants in the setting of HIV infection, provided the potential recipient is stable on highly active antiretroviral therapy (HAART), is RNA-negative, and has a CD4 count ≥ 200 mm3. Outcomes are equivalent to patients without HIV infection. Quote Link to comment Share on other sites More sharing options...
jhschool Posted January 14, 2012 Share Posted January 14, 2012 Anyone who references Nazi's automatically looses every argument.  http://en.wikipedia.org/wiki/Reductio_ad_Hitlerum  But I am not arguing.  I am not saying "The doctor is wrong because he is like Hitler." I am saying: "The doctor is like Hitler."  It is a statement, not a support of a statement.  Please read me correctly. Quote Link to comment Share on other sites More sharing options...
kiana Posted January 14, 2012 Share Posted January 14, 2012 But I am not arguing. I am not saying "The doctor is wrong because he is like Hitler." I am saying: "The doctor is like Hitler."  It is a statement, not a support of a statement.  Please read me correctly.  But why do you find it necessary to say "The doctor is like Hitler" -- why not condemn the practices on their own merit? Why do we need comparisons to the Nazis? Quote Link to comment Share on other sites More sharing options...
Ailaena Posted January 14, 2012 Share Posted January 14, 2012 But I am not arguing. I am not saying "The doctor is wrong because he is like Hitler." I am saying: "The doctor is like Hitler."  It is a statement, not a support of a statement.  Please read me correctly.   Yes, and you're using Hitler (and the Nazis) to appeal to emotion so that people will agree with you.  Either way, at the end of the day, we do not know the whole story. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted January 14, 2012 Share Posted January 14, 2012 This is so sad. I can't even imagine hearing that about your child. Little Amelia deserves more than that. I don't understand why they can't do the transplant sine the family had planned to donate the kidney for her. So sad. Quote Link to comment Share on other sites More sharing options...
kiana Posted January 14, 2012 Share Posted January 14, 2012 BTW, my guess (strictly a guess) is that the doctor did indeed say those things, but that that's not hospital policy but rather the doctor's personal opinion. Quote Link to comment Share on other sites More sharing options...
cjzimmer1 Posted January 14, 2012 Share Posted January 14, 2012 I have to agree that the doctor did a pretty poor job of handling this situation, on the other hand I do understand a bit why they may not do a transplant on someone(generically speaking not referring to this specific case). Â I had a cousin with SEVERE delays. He was also blind and became quite aggressive when anything happened out of his routine. He also needed a kidney transplant. I don't know all the details but I know he was not put on the transplant list (I don't know if it was because of his disabilities, other conditions, not enough time etc). The decision was made to not give him a transplant (he had quite a few family members who could have been potential donors). Because of the lifelong followup, medications necessary etc, not to mention the sheer pain associated with, it was felt that the transplant would be too difficult for him to understand and the pain, pills, off his routine etc would be too much for someone whose IQ was less than a 2 year olds. Â This is just a brief summary there are of course more details, background info etc. but I understand why that decision was made. It was emotionally tough, ultimately by refusing the transplant they were sentencing him to an early death but at the same time, giving him a transplant wasn't necessarily going to give him a better life either. Â I will say I believe the decision for my cousin was made between his parents and the doctors. I think that's why I understand it a little better than the case of the girl where the decision was made solely by the doctors. Quote Link to comment Share on other sites More sharing options...
jenncslp Posted January 14, 2012 Share Posted January 14, 2012 I just came to post about this. If you would like to sign the change petition, just to let them know you are supporting them, it would be great.  http://www.change.org/petitions/saving-lives-includes-the-lives-of-those-with-disabilities  While this is not the case all the time, it is much of the time. Individuals with Down Syndrome have been denied transplants before. It is a sad reflection of our world. But then when the abortion rate is around 90% for a pre-natal diagnosis of Down Syndrome, it appears that many people don't believe they should live. :crying: Quote Link to comment Share on other sites More sharing options...
jhschool Posted January 14, 2012 Share Posted January 14, 2012 (edited) I thought about it. Â I think kiana is right. Â :P Edited January 14, 2012 by jhschool Quote Link to comment Share on other sites More sharing options...
ThatCyndiGirl Posted January 14, 2012 Share Posted January 14, 2012 (edited) Actually, it seems that the hospital gave the parents FOUR reasons: Â MR Brain damage Hep C HIV Â But, the frenzy associated with the case is only focusing on the fact that the child has MR due to Wolf Hirshhorn Syndrome while ignoring her other conditions. Perhaps the hospital ethics committee feels that her MR PLUS brain damage PLUS Hep C PLUS HIV is too much to handle WITH a new transplant? Â It is not a declaration that "this child's life is meaningless" or that "we think this child should die". It may be more that they believe that the risk outweighs the reward? Edited January 14, 2012 by ThatCyndiGirl edited DS to Wolf Hirshhorn Syndrome Quote Link to comment Share on other sites More sharing options...
happi duck Posted January 14, 2012 Share Posted January 14, 2012 disgusting. Quote Link to comment Share on other sites More sharing options...
Aelwydd Posted January 14, 2012 Share Posted January 14, 2012 (edited) I just came to post about this. If you would like to sign the change petition, just to let them know you are supporting them, it would be great. http://www.change.org/petitions/saving-lives-includes-the-lives-of-those-with-disabilities  While this is not the case all the time, it is much of the time. Individuals with Down Syndrome have been denied transplants before. It is a sad reflection of our world. But then when the abortion rate is around 90% for a pre-natal diagnosis of Down Syndrome, it appears that many people don't believe they should live. :crying:  The problem is that DS individuals very often have several moderate-to-severe health problems going on at one time. These often require their own treatment with potent medications that may not be compatible, or may have an overall toxic effect when anti-rejection drugs are added to the cocktail. That, combined with a questionable expectation of adhering to medication regimens, and the ever-present need to be able to justify this to a private insurer, and it gets very sticky.  Now, add to that the fact that if a transplant fails, either at surgery or later on in life, the physicians and the institution that performed it are vulnerable to being sued, irrespective of any "general consent" forms signed, dated, and sealed with blood. Fact is, if an insurance company decides to stop covering part or all the expense of drugs and treatments, and the potential for another new transplant down the road, then it comes down to this: unless the family is independently wealthy, the only recourse they have is to sue to try to cover medical expenses that way.  So, this is perhaps an attempt on CHOP's part to nix that possibility from happening, by simply refusing to do the surgery on the grounds of comorbidity (her other ongoing health condition). Besides which, the hospital probably figures it can better spend its limited resources of personnel, medications, and so forth on patients who have an overall lower risk profile than this child. It strikes me as a form of rationed health care really.  I don't know the whole story, but I'm pretty certain there's a whole lot more fueling the committee's refusal to authorize the transplant than mere contempt for mentally damaged children or adults.  Money, or the fear of potentially losing huge amounts of it. Edited January 14, 2012 by Aelwydd Quote Link to comment Share on other sites More sharing options...
AvasMom Posted January 14, 2012 Share Posted January 14, 2012 Actually, it seems that the hospital gave the parents FOUR reasons:Â MR Brain damage Hep C HIV Â But, the frenzy associated with the case is only focusing on the fact that the child has MR due to Wolf Hirshhorn Syndrome while ignoring her other conditions. Perhaps the hospital ethics committee feels that her MR PLUS brain damage PLUS Hep C PLUS HIV is too much to handle WITH a new transplant? Â It is not a declaration that "this child's life is meaningless" or that "we think this child should die". It may be more that they believe that the risk outweighs the reward? Â :iagree: People are SO fast to react on emotions rather than use logic and realize that the parents may not be the most unbiased people here. Having worked in a big name hospital, I understand the frustration from the other side. People go to big name hospitals because they want miracles and perfect outcomes. When that doesn't happen they want someone's head on a platter and they will take whomever they can get. Quote Link to comment Share on other sites More sharing options...
Ester Maria Posted January 14, 2012 Share Posted January 14, 2012 :iagree: People are SO fast to react on emotions rather than use logic and realize that the parents may not be the most unbiased people here. Having worked in a big name hospital, I understand the frustration from the other side. People go to big name hospitals because they want miracles and perfect outcomes. When that doesn't happen they want someone's head on a platter and they will take whomever they can get. Sadly, this sums up my feelings too. I can understand that people, especially parents, get emotional about these issues, though. Logic is often the last thing on your mind when there is even a small chance that you can do something for your child. That is why it is important to hear the other side, the one of people who are faced with such situations daily and are much more adept at weighing the risks and the benefits in each particular case. Here it seems to be a combination of factors at hand. Quote Link to comment Share on other sites More sharing options...
Aelwydd Posted January 14, 2012 Share Posted January 14, 2012 Actually, it seems that the hospital gave the parents FOUR reasons:Â MR Brain damage Hep C HIV Â But, the frenzy associated with the case is only focusing on the fact that the child has MR due to Wolf Hirshhorn Syndrome while ignoring her other conditions. Perhaps the hospital ethics committee feels that her MR PLUS brain damage PLUS Hep C PLUS HIV is too much to handle WITH a new transplant? Â It is not a declaration that "this child's life is meaningless" or that "we think this child should die". It may be more that they believe that the risk outweighs the reward? Â I may have misunderstood the article, but I thought that the Hep C and HIV were just part of a standard list of conditions on a generic form that may potentially disqualify a patient from a transplant. And that mental retardation/damage were the specific ones highlighted as applying in this case. Â That said, WHS is by itself, associated with a plethora of serious medical conditions, and unfortunately a very short life span for the majority of cases. Quote Link to comment Share on other sites More sharing options...
bbmom Posted January 14, 2012 Share Posted January 14, 2012 (edited) Wolf hirschhorn syndrome has a 21% mortality rate within the first two years. There are at least three major red flags on the common manifestations of the disorder that would prohibit a transplant. This little girl has seizures and just had heart surgery. Her muscle tone is not good and that is one of the things that leads especially to the chest infections that are the main cause of mortality for children with WHS. The doctor is an insensitive jerk if he behaved the way he was depicted, but he is most certainly not even remotely like Hitler for deciding that this little girl is a poor candidate for transplant. There are many children not approved for transplant that are cognitively 'normal' and I am sure it is never an easy decision for a transplant doctor or tewm to make. My heart aches for this family and I do think that if they have a voluntary match from a living donor they should be allowed to move forward with a transplant, and I hope they are able to find a hospital willing to help them. Edited January 14, 2012 by bbmom Quote Link to comment Share on other sites More sharing options...
Word Nerd Posted January 14, 2012 Share Posted January 14, 2012 I may have misunderstood the article, but I thought that the Hep C and HIV were just part of a standard list of conditions on a generic form that may potentially disqualify a patient from a transplant. And that mental retardation/damage were the specific ones highlighted as applying in this case.  That said, WHS is by itself, associated with a plethora of serious medical conditions, and unfortunately a very short life span for the majority of cases.  The writing isn't as clear as it could be, but that's my interpretation as well. The two phrases highlighted in pink were mental retardation and brain damage. She doesn't have Hep C or HIV.  "Paper number one has the words, Ă¢â‚¬Å“Mentally RetardedĂ¢â‚¬ in cotton candy pink right under Hepatitis C. Paper number two has the phrase, Ă¢â‚¬Å“Brain DamageĂ¢â‚¬ in the same pink right under HIV. " Quote Link to comment Share on other sites More sharing options...
mommymilkies Posted January 14, 2012 Share Posted January 14, 2012 :iagree: People are SO fast to react on emotions rather than use logic and realize that the parents may not be the most unbiased people here. Having worked in a big name hospital, I understand the frustration from the other side. People go to big name hospitals because they want miracles and perfect outcomes. When that doesn't happen they want someone's head on a platter and they will take whomever they can get. Â :iagree: My heart goes out to the family, but I can understand the hospital's position. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 14, 2012 Share Posted January 14, 2012 I don't know the whole story, but I'm pretty certain there's a whole lot more fueling the committee's refusal to authorize the transplant than mere contempt for mentally damaged children or adults. Â Â Â I agree. That's why I prefer to discuss some of the issues that this brings up, but not pass judgment on the actual case. If I felt particularly strongly about the case I would have to do a lot of research to really find out what was happening before becoming personally involved in someone else's situation that I only heard about "in passing" on the internet. Quote Link to comment Share on other sites More sharing options...
Mrs Mungo Posted January 14, 2012 Share Posted January 14, 2012 I would be beside myself if my child had been refused a life-saving transplant. It wouldn't matter if my perceptions were accurate or if my reaction was logical. My heart goes out to the family. Quote Link to comment Share on other sites More sharing options...
Jennifer3141 Posted January 14, 2012 Share Posted January 14, 2012 (edited) Sadly, this sums up my feelings too. I can understand that people, especially parents, get emotional about these issues, though. Logic is often the last thing on your mind when there is even a small chance that you can do something for your child. That is why it is important to hear the other side, the one of people who are faced with such situations daily and are much more adept at weighing the risks and the benefits in each particular case. Here it seems to be a combination of factors at hand. Â Â :iagree::iagree: Â And the medical term for it IS mental retardation. I don't mean to be cruel but that's the medical term. Listen, every single one of us would be appalled by the correct medical terminology for what we're walking around with but these are medical professionals. You don't want them to be "PC." You want them to be absolutely, totally precise when thinking and discussing your medical condition. Â And every single time of these stories totally comes to light, we discover other factors that the parents just sort of "forgot" to blog about so I think I'll just reserve judgment. Â I'm also confused. Lots of people are up in arms over this child but when a 40 year old man is dying because he doesn't have health insurance, "Let him die!!" is a totally acceptable response? :confused: Edited January 14, 2012 by Jennifer3141 Quote Link to comment Share on other sites More sharing options...
Word Nerd Posted January 14, 2012 Share Posted January 14, 2012 Â I'm also confused. Lots of people are up in arms over this child but when a 40 year old man is dying becuase he doesn't have health insurance, "Let him die!!" is a totally acceptable response? :confused: Â Who says this? It sounds more like a misrepresentation of a political view you don't share. Quote Link to comment Share on other sites More sharing options...
Jennifer3141 Posted January 14, 2012 Share Posted January 14, 2012 Who says this? It sounds more like a misrepresentation of a political view you don't share. Â I don't understand the rage on behalf of one but not the other. A life is a life is a life, right? Quote Link to comment Share on other sites More sharing options...
chiguirre Posted January 14, 2012 Share Posted January 14, 2012 Who says this? It sounds more like a misrepresentation of a political view you don't share. Â Here's a link to an article that explains the reference. It made the rounds of the internet a couple of months ago. Â http://articles.latimes.com/2011/sep/13/news/la-pn-ron-paul-gop-debate-20110913 Quote Link to comment Share on other sites More sharing options...
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