tag:blogger.com,1999:blog-1809371631407381115.post172008532143177496..comments2024-03-12T07:48:29.712+03:00Comments on Stories from the trauma bay: CharlieDocBastardhttp://www.blogger.com/profile/12224592098492491365noreply@blogger.comBlogger166125tag:blogger.com,1999:blog-1809371631407381115.post-19908431206410659632017-08-04T17:43:48.988+03:002017-08-04T17:43:48.988+03:00But gee, they already have to foot the legal costs...But gee, they already have to foot the legal costs associated with always inserting themselves in these disputes. They have an agenda to advance and have no right to complain about bearing the costs of their crusade.<br /><br />American organizations such as theirs were in the forefront in contributing false hope to the Gard family's quest for futile treatment.<br /><br />If I believed in hell there would be a special corner reserved for folks like this.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-75162671468109455912017-08-04T17:27:28.563+03:002017-08-04T17:27:28.563+03:00maybe it is time to make LLDF liable for medical e...maybe it is time to make LLDF liable for medical expenses incurred from futile care done at their instigation.Ken Brownhttps://www.blogger.com/profile/15166383392696452631noreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-16610216444340252352017-08-04T02:44:32.925+03:002017-08-04T02:44:32.925+03:00When the US prof's name first appeared, I goog...When the US prof's name first appeared, I google scholar searched his name and found several article he had published. Patient care and patient selection was lacking in those that were not behind pay walls. I doubt that Charlie's Mum could have read any of them with much comprehension, I found it hard to follow specifics.<br /><br />Then there are the "eight doctors" who said Charlie could be helped. I think it needs being mentioned that the two from Spain are NOT Doctors of Medicine, but PhDs who have no medical training, but are chemists by profession. ann sceptichttp://rosegeeks.comnoreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-79884063075578161092017-08-03T02:47:21.729+03:002017-08-03T02:47:21.729+03:00I realize this thread is from several weeks ago, b...I realize this thread is from several weeks ago, but while RRM2B is required for mitochondrial DNA synthesis, the gene is located on Chromosome 8 of the nuclear DNA. <br /><br />Charlie inherited his mutation from both parents in his nuclear DNA, not his mother's mitochondrial DNA. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-23316249124765340792017-08-01T23:44:30.265+03:002017-08-01T23:44:30.265+03:00Right to life organizations like LLDF are trying t...Right to life organizations like LLDF are trying to kill the UDDA by means of a thousand paper cuts through multiple court interventions like this. They actually complained in this brief that their crusade against brain death is draining their resources as if the judge should take that into consideration.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-7321475015488129032017-08-01T20:32:16.598+03:002017-08-01T20:32:16.598+03:00It won't happen.It won't happen.DocBastardhttps://www.blogger.com/profile/12224592098492491365noreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-62150768772775155672017-07-31T16:41:14.704+03:002017-07-31T16:41:14.704+03:00Israel Stinson's mother, with legal backing fr...Israel Stinson's mother, with legal backing from the Life Legal Defense Foundation, has just filed a motion challenging the constitutionality of CUDDA, CA's universal determination of death act. Professor Pope has a link to the filing on his Medical Futility Blog. <br /><br />They argue that Fonseca was not awarded due process because she was deprived of her right to a third independent examination. Her choice of physician, of course, was Alan Shewman. The court rejected this choice because of his bias against the concept of brain death. They also cite the Charlie Gard case as an example of the state usurping parental authority to make medical decisions on behalf of their children.<br /><br />If the court agrees it could signal the end of the UDDA statutes across the US. The hearing is scheduled for August 11th. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-83394565811426050002017-07-30T10:05:29.346+03:002017-07-30T10:05:29.346+03:00Thanks Ken. Bookmarked for future reference.Thanks Ken. Bookmarked for future reference.Heliantushttps://www.blogger.com/profile/14602719959230165503noreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-16009021566463863612017-07-29T19:42:06.537+03:002017-07-29T19:42:06.537+03:00an excellent overview for those who are still ques...an excellent overview for those who are still questioning the role the courts had and why charlie couldn't have the experimental therapy:<br /><br />https://medium.com/@charlesarthur/charlie-gard-facts-medicine-and-right-wing-fictions-e4b933ed8c12Ken Brownhttps://www.blogger.com/profile/15166383392696452631noreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-51962737523933933542017-07-29T17:08:25.071+03:002017-07-29T17:08:25.071+03:00some of the armchair quarterquacks on some of the ...some of the armchair quarterquacks on some of the more politically active boards were unbelievable in their willingness to allow doctrine to supercede facts.Ken Brownhttps://www.blogger.com/profile/15166383392696452631noreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-61932817841756785142017-07-28T21:09:47.248+03:002017-07-28T21:09:47.248+03:00Whoops, Nutters not butters!Whoops, Nutters not butters!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-74072351834308536662017-07-28T21:08:51.685+03:002017-07-28T21:08:51.685+03:00It has just been announced that little Charlie Gar...It has just been announced that little Charlie Gard has died. I hope that there are no further recriminations towards the staff at GOSH. They always did what they thought best for the boy and had to defend themselves against the parents who were quite evidently in denial and the butters who hooked themselves to this tragic bandwagon.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-42089020102467201202017-07-27T05:23:57.806+03:002017-07-27T05:23:57.806+03:00The April judgment of Mr. Justice Francis is worth...The April judgment of Mr. Justice Francis is worth a read. <br />http://www.bailii.org/ew/cases/EWHC/Fam/2017/972.html<br /><br />I will add that from what I can tell, the conduct of Justice Francis throughout this matter has been very highly commendable.dougnoreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-19567977933240602652017-07-27T03:26:32.664+03:002017-07-27T03:26:32.664+03:00My understanding is that the no-transport ruling c...My understanding is that the no-transport ruling came from the court, not GOSH. The court felt that pursuing this treatment was not in the child's best interest, and felt that the family would try to pursue it if they took the child from the hospital. Second, the hospital felt that transporting him to anything but a hospice facility would not be practical or advisable, given the level of care he needed. <br /><br />The latter question came up again today in court, because the parents want to take him to their home for the final week so that friends and family can gather to pay last respecs. Their lawyer said today that some nurses and a doctor from GOSH have volunteered to care for him during that time, but the family hasn't been able to find an intensive care specialist. The hospital says that's essential for his care. The court has given them until noon on Thursday to try to work something out with the hospital that would make home care possible. The court said that if they can't, then he will go to a hospice facility where the appropriate staff and services are available.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-89414729633854269392017-07-26T19:17:44.368+03:002017-07-26T19:17:44.368+03:00my best guess is they refused to order a transfer,...my best guess is they refused to order a transfer, which would mean that any physical removal of Charlie from their care would legally be against their wishes, and therefore any negative result could not be blamed on them. I don't know whether they would have gone so far as to physically resist an attempt to remove him, and fortunately we won't have to.Ken Brownhttps://www.blogger.com/profile/15166383392696452631noreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-21661653935226002332017-07-26T17:47:58.952+03:002017-07-26T17:47:58.952+03:00The one part of this story I've never been tot...The one part of this story I've never been totally clear about is: what exactly does it mean that GOSH wouldn't let the parents take Charlie to America? Are/were they literally, legally, not allowed to take him out of the hospital, and they would get arrested for kidnapping or something if they tried? Or does it just mean the hospital wouldn't agree to help move him, so in practice he can't leave since he'll die without the machines he's hooked up to?Alphienoreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-33863542718044147902017-07-26T01:42:37.100+03:002017-07-26T01:42:37.100+03:00I was willing to overlook opportunistic. however,...I was willing to overlook opportunistic. however, not being bothered to see if his proposed test subject was suitable is more than a little bit careless.Ken Brownhttps://www.blogger.com/profile/15166383392696452631noreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-73054153178345975602017-07-25T17:24:01.696+03:002017-07-25T17:24:01.696+03:00This case has triggered a resurgence in Jahi McMat...This case has triggered a resurgence in Jahi McMath stories in the media - all misinformed, and most out of date. Ken Brownhttps://www.blogger.com/profile/15166383392696452631noreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-18395318167907068102017-07-25T17:18:11.888+03:002017-07-25T17:18:11.888+03:00Paragraph 10 has very much diminished my previousl...Paragraph 10 has very much diminished my previously moderately positive opinion of Dr. Hirano. I had come to view him as someone much more interested in seizing his opportunity to try to grab some data that would further his research, while regarding benefit to Charlie as a nice bonus.<br />My opinion now is that his action has been somewhere between irresponsible and malpractice. If I were his dean, it would be seriously thinking about ripping him a new one.dougnoreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-24543469179138537232017-07-25T03:09:14.216+03:002017-07-25T03:09:14.216+03:00I glad that the parents ended their legal appeals ...I glad that the parents ended their legal appeals and chose to spend their finals days with their son. It's sad. But it's best for the family. But it begs to question. If Charlie can feel pain which I do not doubt, can he not also feel his mothers touch? Or how it feels to be lovingingly held, touched, loved? Not all must be lost right? His entire existence can't be all pain right? I understand he cannot hear or see but he feels. He's got to have some sort of emotional connection to his parents. I'd hope. Or maybe it's wishful thinking. <br />At any rate. I'm saddened by such a cruel disease.... and for any infant/child loss. Not your average housewife https://www.blogger.com/profile/07162052262629801014noreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-54823967896686943322017-07-25T03:01:03.943+03:002017-07-25T03:01:03.943+03:00as promised, his parents have my sympathy for thei...as promised, his parents have my sympathy for their loss.Ken Brownhttps://www.blogger.com/profile/15166383392696452631noreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-65356373733979144912017-07-25T01:25:19.849+03:002017-07-25T01:25:19.849+03:00Here's the end of the story, from Great Ormand...Here's the end of the story, from Great Ormand Street Hospital (GOSH) <br /><br />http://www.gosh.nhs.uk/news/latest-press-releases/gosh-position-statement-issued-high-court-24-july-2017<br /><br />Look at the bottom for the link to the statement. <br /><br />"GOSH’S POSITION STATEMENT HEARING ON 24 JULY 2017<br />Respondents"<br /><br />"7. At the first hearing in Charlie’s case in March, GOSH’s position was that every day that passed was a day that was not in his best interests. That remains its view of his welfare. Even now, Charlie shows physical responses to stressors that some of those treating him interpret as pain and when two international experts assessed him last week, they believed that they elicited a pain response. In GOSH’s view there has been no real change in Charlie’s responsiveness since January. Its fear that his continued existence has been painful to him has been compounded by the Judge’s finding, in April, that since his brain became affected by RRM2B, Charlie’s has been an existence devoid of all benefit and pleasure. If Charlie has had a relationship with the world around him since his best interests were determined, it has been one of suffering.<br /><br />8. Throughout, his parents’ hopes have been sustained by advice received from overseas. Mitochondrial disorders comprise a specialised and small international field. The experts in that field meet, collaborate and exchange ideas on a very regular basis and it is that valued collaboration that allows progress to be made and patients to be provided with the best possible care. Professor Hirano (“the Professor”), whose laboratory research has an international reputation, is very well known to the experts at GOSH and he communicated with them about NBT treatment for Charlie at the very end of December. In January, GOSH invited the Professor to come and see Charlie. That invitation remained open at all times but was not taken up until 18 July after being extended, once again, this time by the Court.<br /><br />9. In the months between January and July, the Professor provided written and oral evidence for the best interests hearing in April and, after the Court decided that NBT was not in Charlie’s best interests, he went on to provide further written evidence for the Court of Appeal and the Supreme Court. Most recently, on 6 July, he co-signed the letter indicating that he had new information that changed the picture for Charlie, that brought this case back before the High Court.<br /><br />10. When the hospital was informed that the Professor had new laboratory findings causing him to believe NBT would be more beneficial to Charlie than he had previously opined, GOSH’s hope for Charlie and his parents was that that optimism would be confirmed. It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie. Devastatingly, the information obtained since 13 July gives no cause for optimism. Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie."<br /><br />Liz Ditzhttps://www.blogger.com/profile/03455722013211350247noreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-16946032077363829082017-07-24T16:59:25.445+03:002017-07-24T16:59:25.445+03:00CNN reports that doctors agree there is no hope fo...CNN reports that doctors agree there is no hope for treatment to work and Charlie’s parents have given up the fight. It is a horrible tragedy for all involved. Casihttps://www.blogger.com/profile/07627138315187930007noreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-21540248961531493832017-07-24T05:51:28.022+03:002017-07-24T05:51:28.022+03:00The Charlie Gard parents public supporters seem to...The Charlie Gard parents public supporters seem to think Dr Michio Hirano will be some kind of miracle worker.<br />He is the doctor who offered the initial treatment only to withdraw his offer when he saw Charlie's medical records and learned Charlie was far sicker than he had been led to believe.<br /><br />Their supporters seem to think the treatment will work on Charlie the way it has with some other sufferers of mitochondrial disease, an idea encouraged by his parents.<br />The public here aren't seeing the words <b>Similar to</b>.<br />The treatment works only on those with a mitochondrial disease that affects only the muscles and even then it has to be in in mildest form TK2.<br />They are ignoring the fact that the version Charlie has also affects the brain, his organs as well as the muscles. He is profoundly brain damaged and likely is in some form of PVS, judging by the video of his mom stroking his face, there was absolutely no physical response, not even a blink.<br /><br />Said doctor and parents claimed there was a chance his treatment could work and give him 10% improvement in muscle function with some claims of up to 56%.<br />As has been mentioned above, should there be any improvement in his muscles, what would that do for his quality of life?<br />He would still be blind, deaf, mute, profoundly brain damaged, totally reliant on a ventilator with all his organs failing.<br />Would it mean he would now show physical signs of his epileptic fits?<br />Would they be gentle twitches or violent thrashing about?<br />Would it be the ability to open/close his eyes or move a toe?<br />What do his parents expect to happen apart from the laughably ridiculous riding a bike and being a perfectly normal little boy as claimed by his mom?<br /><br /><b>She said: "There is potential for him to be a completely normal boy but we don’t know, you just don’t know until you try. There’s 18 people on this medication already. The only side effect is diarrhoea. There’s been some amazing responses very, very quickly."</b><br /><br />What would they be satisfied with?<br />At what point would the parents decide to do the right thing by Charlie?<br />Would they want him at home hooked up to all sorts of machinery to keep him alive, confined to a bed?<br />If so, how long before the stress and strains of looking after him 24/7 cause them to separate?<br />How long before they decide he would be better off in hospital?<br />Having him as the status quo, in hospital hooked up to all sorts of wires and tubes dead but not dead?<br /><br />Sad to say, i think the parents especially the mom are in denial, and this is to be expected, the maternal instinct is strong and normal.<br />Should they lose the case, i would not be surprised if they appealed it all the way to the supreme court.<br />Delaying the inevitable.<br />The media post cute pictures of Charlie, old pictures of Charlie on the hospital roof, looking like a normal sleeping infant, only recently have we seen a couple of pictures where we can see how swollen Charlie is, even though he is nearly one and growing.<br />Swollen, poorly Charlie is not what the parents want the public to see.<br />The MRI scan was taken for 4 hours rather than the 30 mins the parents demanded (why did they want only 30 mins?)<br />The court lawyer said it makes for sad reading.<br />How bad can it be now given what we already know?<br />Tania Cadoganhttps://www.blogger.com/profile/06511272355142175684noreply@blogger.comtag:blogger.com,1999:blog-1809371631407381115.post-18331666237847678342017-07-24T05:12:53.496+03:002017-07-24T05:12:53.496+03:00I agree.
I agree.<br />Tania Cadoganhttps://www.blogger.com/profile/06511272355142175684noreply@blogger.com