tag:blogger.com,1999:blog-401303964563152307.post6336816718847069598..comments2024-03-17T12:02:12.410-04:00Comments on Love That Max : Should kids with disabilities be denied transplants? Some doctors think soEllen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger56125tag:blogger.com,1999:blog-401303964563152307.post-74892462539865954472018-03-23T16:38:45.057-04:002018-03-23T16:38:45.057-04:00Fastidious answer back in return of this query wit...Fastidious answer back in return of this query with solid arguments and explaining all about that.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-17723886270088122532014-06-19T13:18:11.081-04:002014-06-19T13:18:11.081-04:00https://www.facebook.com/photo.php?fbid=4981268103...https://www.facebook.com/photo.php?fbid=498126810333857&set=a.233637640116110.1073741835.213107108835830&type=1&theater<br /><br />Another child who has lost her life because she was refused a heart transplant because she has a disability --- :(Iceychipshttps://www.blogger.com/profile/13967708505729339866noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-17443206045688977372013-08-24T03:39:58.135-04:002013-08-24T03:39:58.135-04:00I know this is an older post but the issue is stil...I know this is an older post but the issue is still very current. We have four adopted children with Down Syndrome, the youngest two we just recently adopted. Our baby girl is two years old and was seen today by a pediatric cardiologist for a check on her heart since at least half of all people with DS have heart defects. We had been told she had a heart defect but it was very mild and would not require surgery. Today we found out her heart defect could have been repaired at birth but was not and is so severe now that it has caused irreparable harm to her lungs. She would most likely die during a procedure to even attempt to repair her heart. Basically she is terminally ill. When I asked the well respected, younger doctor if she could be saved by a lung transplant he said that was a possibility BUT, "People with Down Syndrome are not considered candidates for transplants". It was then that I lost it. My child is dying who along with her siblings are our world and you are telling me she is not worthy of a transplant?!?!?! I am speechless. I am in shock. These are my children who bring sunshine, joy and love into so many lives everyday. These are my children who can read, write, count, spell, know colors and shapes, sing enthusiastically with their favorite songs, love each other fiercely and do not know anything but goodness. And they are not WORTHY!!!! I will begin to fight this today and I will not stop. My children offer more to this world than most people I know. This is discrimination and completely unjust. If you do not agree it is because you do not have the privilege of having a child with DS. Thanks for this post. harris family journeyshttps://www.blogger.com/profile/14596832058421964184noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-79522345890967523472012-01-26T03:14:21.565-05:002012-01-26T03:14:21.565-05:00This is an emotional issue and I am so glad that b...This is an emotional issue and I am so glad that both sides of the issue are being aired.<br />We don't know the whole story but the paper you cite shows a significant bias when medicos consider transplants and kids with MR (an accepted medical term in the US btw).dderbydavehttps://www.blogger.com/profile/07448901859808979140noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-56914234916891650752012-01-19T17:38:49.531-05:002012-01-19T17:38:49.531-05:00I don't think we're getting the full story...I don't think we're getting the full story here. Her disorder is very complex. It's hard to say what else might have prompted the transplant denial. Hearing the hospital's side of it might be good as well. If it's just for her mental disability, and she has someone to care for her who can help her manage, then yes, denying her that is wrong. However, there are also a limited number of organs to go around, and they do want to give it to someone who has the best chance of success, otherwise an organ is wasted and the patient has had a whole lot of suffering for nothing. If her health is precarious for other reasons, which is a possibility, then she is not a good candidate for transplant. I understand that for the parents this is heartbreaking, but would like to hear the doctor's side too. This is coming from someone who will most likely need an organ transplant in the future, so I am trying to understand both sides of it. No, she is not "less worthy", but if she is less likely to survive with that treatment, it's a bad idea all around.Rachaelnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-37156447936812116332012-01-18T08:59:41.522-05:002012-01-18T08:59:41.522-05:00Alisa -
I agree that the meeting with this famil...Alisa - <br /><br />I agree that the meeting with this family was handled extremely badly. Additionally - the family is offering to find a donor within their own family (and presumably wouldn't even need to be on the wait list). I hope they will go elsewhere where they will be treated better.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-10249388961189788492012-01-17T16:24:22.019-05:002012-01-17T16:24:22.019-05:00To anyone,
Even if there is OTHER underlying cond...To anyone,<br /><br />Even if there is OTHER underlying condition like the heart, NO FAMILY SHOULD HAVE TO SEE A PAPER WITH HIGH LIGHTED WORDS that highlighting MENTAL DISABILITIES, OR OTHER DISABILITIES, as even PART of the reason for NOT doing the transplant. This story is a HORRIFIC for just the very reason of the use of the disability and the high lighting and some of the other comment about quality of life. LET ALONE the fact that this beautiful child was refused the transplant. They offered no option for IF HER HEART GOT STRONGER that so has been said. This alone tells me they put more weight into denying the transplant on her mental disability and less was based on her heart condition. NO ONE SHOULD BE PUT THREW A MEETING like that. It sure did not sound like the social worker was even trying to be helpful to the family when the news was broken to them. At the very least the negative way this meeting took place ANGERS ME COMPLETELY. Its one of many reason I fight for my kids and family via my website www.mumonamission.org discrimination is discrimination whether a law some how permits it or not. Just because it might be better or easier or there NOT enough organs, or what ever the other reason NO EFFICACIOUS should be on the disability for a transplant or ANYTHING that EVEN MIGHT REMOTELY stand a chance of saving a life or improving length of life, or quality of life. My battle might be much smaller than this but my kids deserve an education that will give them an EQUAL chance to make something of there life, THIS FAMILY DESERVES MORE TIME WITH THERE BEAUTIFUL CHILD.Alisahttp://www.mumonamission.orgnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-86716497724731374062012-01-17T10:27:45.729-05:002012-01-17T10:27:45.729-05:00Sadly there are not enough organs for everyone tha...Sadly there are not enough organs for everyone that needs a transplant. I certainly wouldn't want to be in the position of making the decisions of who will and won't get an organ. <br /><br />It seems like a slipperly slope for a doctor to decide that a child should not get an organ because she is cognitively impaired. However, this is a very tough subject and there are no easy answers.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-18576685968576511862012-01-16T21:04:31.038-05:002012-01-16T21:04:31.038-05:00I am a mother of (thankfully!) four beautiful chil...I am a mother of (thankfully!) four beautiful children. I know that I would move heaven and earth for them. However, I am also a nurse practitioner so I have some medical background. I don't agree with what the doctor said but there was also an underlying issue of the heart not being strong it seems from the article about Amelia and info gleaned from their website. So in order for anything to even go right the heart needs to be strong enough to withstand that type of hard labor that it will take during the transplant. I just think that we are getting ahead of ourselves with this one little girl. All the facts need to be weighed before we get up in arms about the medical community not placing value on "mentally retarded" or "special needs" patients. Whatever they or you call them they still have cognitive impairments and we do need to weigh the precious organ against the fact that the person receiving it will in fact be able to care for that organ(s) with the utmost care that it deserves. So before you attack the community that is meant to help you (medical) you should first take a step back and breathe before you do anything else. <br />My son was "diagnosed" with autism and it turns out he just didn't want to do the test that day. So yes, perserverance does pay but be careful how far you challenge. The medical community of transplantation is extremely small and well connected and it can be either very open and welcoming to you or shut you down, no matter how far you fight. There have been others that were not that lucky.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-80796249770434544952012-01-16T16:33:21.763-05:002012-01-16T16:33:21.763-05:00My daughter Ana had Hepatitis B up until she clear...My daughter Ana had Hepatitis B up until she cleared the virus at age 13. Back when her viral particles were still off the medical charts a doctor here in Grand Rapids, MI, told us she would not be eligible for a liver transplant because of her limb differences. (Ana was born without legs and with shortened arms.) He also spoke of poor quality of life. We took her to a pediatric endocrinologist in Ann Arbor who would consider her for a transplant. Thank the Lord it does not appear that she will need that transplant, but shame on those doctors playing god, thinking they can determine which lives are worth living. Today, at the age of 15 Ana has begun her motivational speaking career and inspires people everywhere she goes. She is such a joy and has blessed so many. Here is a youtube video of her for your encouragement: http://www.youtube.com/watch?v=hOJEGoFgeQUMichelehttps://www.blogger.com/profile/07071918917095698676noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-46841283307624301492012-01-16T15:14:35.865-05:002012-01-16T15:14:35.865-05:00I can't even believe things like this are stil...I can't even believe things like this are still happening in this day and age.<br /><br />Why is it they think one life is of more value than any other? I just don't get it.Nanette ~ A Mom Bloghttp://www.amomblog.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-49293817220014359842012-01-16T03:31:02.910-05:002012-01-16T03:31:02.910-05:00I signed the petition and mentioned it on my blog ...I signed the petition and mentioned it on my blog Amelia deserves a chance just like anybody else. Hasn't that doctor a heart?Nishahttp://nisha360.com/noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-79559856001915576322012-01-16T02:05:58.371-05:002012-01-16T02:05:58.371-05:00Ohh very touchy subject!!
Okay, I'm going to c...Ohh very touchy subject!!<br />Okay, I'm going to come from the other side of things. We only know part of this story.<br /><br />The transplant process is a very big one, and it's not as simple as getting new organs, be it a new kidney, heart, or a set of lungs.<br />When the patient is told they will need a transplant, there is a fare bit of testing to go through - blood tests, 24hr urine tests, etc.<br />Then there is the mental testing to see if you will be mentally stable to go on the list. As I said before, it's not just magically getting new organs and all is okay - it's far from it! You need to be mentally prepared for the work that goes on before, during the healing process, and after txplant.<br />Before hand, you have to face the reality that you could die while waiting on the list. Now, for a 3yr old, that wouldn't really come into play, as they wouldn't know much difference (sorry if that sounded harsh).<br />During the lead up, there will be more testing, there will be blood tests every month, and she will gradually get sicker, so that means lots of medical treatment, though I doubt that would matter since she would be having treatment with her condition anyway.<br />After transplant on the other hand is where it will get difficult. Even if one of her family members do match perfectly and can give her a kidney, the amount of anti-rejection medication and physiotherapy she will need during healing is heaps!!<br />I have been told, for a lung transplant, I can expect to be taking no less than 30 tablets each day. 30!! Now, it's hard enough to get kids to eat their vegetables, let alone take something that they don't realise is going to keep them alive!! Trust me, my parents know that first hand!<br />To be able to get someone who is 'mentally retarded' to understand that they need to take that medication so they can live a long happy life would only be part of the challenge.<br />No one can guarentee that these organs will take to her body & that she will live a happy life. She could end up in more pain from the transplant, she could die in 6 months time anyway because of rejection. Transplant is no magical cure.<br />Even if she ends up on the txplant list because none of her family members match her blood/tissue type, with her condition, no doubt she wont be near the top of the waiting list. I can see where the parents are coming from, but I can see where the doctors are coming from more. If they can save another person's life, who they know will look after themselves & not damage/ruin this gift of life, I know which patient I would be choosing.<br /><br />I can say all this because I am waiting for new organs too.<br />For the little girls sake, I would rather her live this happy little life she has at the moment, then have to go through all the pain in the world, not understanding what is going on, only just to pass away because the txplant did not work...Tameahnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-16699642093837039622012-01-15T19:19:10.526-05:002012-01-15T19:19:10.526-05:00Thank you for blogging about this. I have signed ...Thank you for blogging about this. I have signed the petition and have also blogged about this situation as well.<br /><br />People can find more ways to communicate with CHOP at http://www.chop.edu/contact-us/index.html<br /><br />The organization "Not Dead Yet" has also blogged on this situation. This excellent organization campaigns to educate medical personnel and the general public that, no, a disability does NOT diminish one's capacity to enjoy life, YES, the lives of people with disabilities are worth living. It's sad that people actually need to be taught this, but "Not Dead Yet" has been working on this huge, uphill battle for years with some success in heightening the visibility of these issues. Their blog site is at http://notdeadyetnewscommentary.blogspot.com/Andrea S.http://reunifygally.wordpress.com/2012/01/15/disability-the-quality-of-life-and-amelia-rivera/noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-61718906110353101272012-01-15T15:33:57.439-05:002012-01-15T15:33:57.439-05:00I feel there is so much that is wrong here, but th...I feel there is so much that is wrong here, but the statement the social worker made about Amelia needing another transplant in 12 years? No one can predict the life of a transplanted organ; my transplanted kidney has been working for over 17 years and I have been off all immunosupressive medications with no episodes of rejection. <br /><br />So much about this angers me but no one can predict the medical outcome of someone who has a fighting spirit.ahappygirlhttps://www.blogger.com/profile/15125801880603246127noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-18582013452038496772012-01-15T14:00:34.649-05:002012-01-15T14:00:34.649-05:00I posted my reaction here:
http://www.outrageousf...I posted my reaction here:<br /><br />http://www.outrageousfortune.net/2012/01/what-scares-me-most-about-my-sons.html<br /><br />And I'll sign the petition.Shastahttps://www.blogger.com/profile/01013565031179610593noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-4687576492480336932012-01-15T00:16:21.379-05:002012-01-15T00:16:21.379-05:00Disgusted!Disgusted!Gina @ Special Happenshttps://www.blogger.com/profile/06365171441092415607noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-69229042481402826292012-01-14T22:06:19.904-05:002012-01-14T22:06:19.904-05:00I signed the petition. All life is valuable! And...I signed the petition. All life is valuable! And ALL children are precious.Ms. Tonyahttps://www.blogger.com/profile/17980806390886057604noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-64185300751988565322012-01-14T20:40:34.606-05:002012-01-14T20:40:34.606-05:00This Darwinian approach to medicine on the part of...This Darwinian approach to medicine on the part of Amelia's doctor and CHOP is truly appalling. If her parents are willing and able to both provide the organ as well as provide her with all the care she needs to live her version of a happy and productive life, how is it anybody else's place to deny them? So very disturbing :(Jessica @peekababyhttp://peekababyny.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-15989582390422669052012-01-14T20:40:21.762-05:002012-01-14T20:40:21.762-05:00This is so heartbreaking! It never entered my min...This is so heartbreaking! It never entered my mind that a doctor would refuse to treat based on cognitive status. I understand that they must take into account many factors, but cognitive status? This really makes me angry and sad. I can't even look into my son's future without wondering what I would do if a doctor said that to me.Bea, OThttps://www.blogger.com/profile/08301207485195668332noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-8757224780885418662012-01-14T19:25:59.755-05:002012-01-14T19:25:59.755-05:00I am a mother of a young man with severe, multiple...I am a mother of a young man with severe, multiple disabilities. I am also the author of a book about our struggles to create a good life for our son - it's called "The Four Walls of My Freedom". I've been blogging recently about this pernicious trend to limit treatment options for those with cognitive impairments. Anyone who loves someone with such disabilities should be worried. My blog can be found at: https://donnathomson.blogspot.com.The Caregivers' Living Roomhttps://www.blogger.com/profile/10920119448415733545noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-19044815312054491772012-01-14T13:01:49.685-05:002012-01-14T13:01:49.685-05:00This is outrageous!! That doctor must not know any...This is outrageous!! That doctor must not know anyone personally with special needs. If he did he would know children with special needs deserve life just as any other child deserves life. I would like to see one of his children denied an organ based on their IQ or based on their hair color... It would be ridiculous and would not make sense. The same as denying an organ based on cognitive functioning.Corrinahttps://www.blogger.com/profile/04743125417601939245noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-60298815258549960502012-01-14T12:24:32.670-05:002012-01-14T12:24:32.670-05:00I am in disbelief, and will pray that this decisio...I am in disbelief, and will pray that this decision is overturned for this precious little girl and her family. . .Kate Hallhttp://www.richmondmom.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-69583984099699769842012-01-14T12:01:20.717-05:002012-01-14T12:01:20.717-05:00Excellent comments here.
To those of you who'...Excellent comments here. <br /><br />To those of you who've had a knee-jerk "It's Obama's fault" reaction: as others have stated, this particular situation has nothing to do with him or his healthcare plan. A transplant for this child would have met with the same resistance during the Bush administration, and many, many administrations before that. As Rose says, "This is about Amelia, ableism, and bad practices.<br /><br />And to anyone like Eric who thinks an underlying issue here isn't the doctor's (and others') belief that children with cognitive impairment aren't worthy of transplants: Please explain why, then, this doctor SAID THAT to this couple—that her "mental retardation" (as he called it) was the issue. And check out the link to that study I posted from Pediatric Transplantation.<br /><br />Obviously, there are many factors that come into play for who get on the waiting list for organ donation—but in this case, the family is saying they would make the donation and the doctor denied them. I.e., Amelia is not even worthy of their efforts/operating time. <br /><br />It is impossible to deny: There are doctors out there who think people with cognitive impairment are less worthy of life.Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-72732732383886760412012-01-14T10:50:39.599-05:002012-01-14T10:50:39.599-05:00I don't see how a human being could look at th...I don't see how a human being could look at that sweet face, those bouncy pigtails, and say no to saving that life. A doctor??? Who has the skills? I just don't understand how he lives with himself.kateypie35https://www.blogger.com/profile/06947085438480441265noreply@blogger.com