# The Charlie Gard case(terminally ill baby and parental rights) **URL:** \ **Category:** Great Debates\ **Created:** [July 7, 2017, 2:07am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664 "2017-07-07T02:07:10Z")\ **Posts on this page:** 17\ **Page:** 12
**Author:** ![Tigers2B1](https://avatars.discourse-cdn.com/v4/letter/t/9fc29f/32.png) [@Tigers2B1](https://boards.straightdope.com/u/Tigers2B1)\ **Post date:** [July 25, 2017, 2:09am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/221 "2017-07-25T02:09:11Z")
> [@bob\_2](#): > > Maybe the unused donations will now be handed over to Great Ormond St Hospital - I am confident that they would make good use of it… Or maybe now that its become ‘too late’ to use that money for Charlie – it can be moved to so that it supports patents who advocate for their children against the leviathan. ---
**Author:** ![Merneith](https://avatars.discourse-cdn.com/v4/letter/m/57b2e6/32.png) [@Merneith](https://boards.straightdope.com/u/Merneith)\ **Post date:** [July 25, 2017, 2:22am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/222 "2017-07-25T02:22:49Z")
> [@drewder](#): > > Since I suspect the parents wouldn’t piss on that hospital if it were on fire I very much doubt the money will go to them. The parents have been pissing on that hospital for months so I doubt that they’re suddenly going to let this go. They blame the hospital for not letting them start treatment right away, even though the damage caused by the seizures had already taken place before the the American Doctor butted in. I really blame Doctor Hirano for this. He made promises to the parents about the extent of Charlie’s brain damage before personally examining him, all in order to promote his experimental treatment. Now, months later, when it turns out that the hospital was correct and Charlie’s damage was irreversible, suddenly Dr. Hirano bows out and the Hospital is left being blamed for the delay. Doctor Hirano’s irresponsible behavior has caused real pain and damage to the Gard family and the Great Ormand Street Hospital, both. ---
**Author:** ![Broomstick](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/broomstick/32/246_2.png) [@Broomstick](https://boards.straightdope.com/u/Broomstick)\ **Post date:** [July 25, 2017, 4:56am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/223 "2017-07-25T04:56:08Z")
> [@bob\_2](#): > > Maybe the unused donations will now be handed over to Great Ormond St Hospital - I am confident that they would make good use of it. The parents have mentioned creating a foundation of some sort in Charlie’s name which may in fact be a good use for it, depending on the purpose of said foundation. > [@Merneith](#): > > They blame the hospital for not letting them start treatment right away, even though the damage caused by the seizures had already taken place before the the American Doctor butted in. The brain damage wasn’t caused by seizures. It was caused because the mitochondria, the bits of cells that allow us to utilize oxygen and that generate energy for the cell, were malfunctioning. The cells don’t have the energy to function or even live long-term. His cells don’t have the energy to have a seizure. And, frankly, I think the parents share some of the blame for the current mess. When they didn’t get the answers they wanted (as opposed to those rooted in reality) they went to the press and stirred all this up. I understand the motivation, but they are in part responsible for some of the mess. ---
**Author:** ![Merneith](https://avatars.discourse-cdn.com/v4/letter/m/57b2e6/32.png) [@Merneith](https://boards.straightdope.com/u/Merneith)\ **Post date:** [July 25, 2017, 5:49am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/224 "2017-07-25T05:49:24Z")
> [@Broomstick](#): > > The brain damage wasn’t caused by seizures. It was caused because the mitochondria, the bits of cells that allow us to utilize oxygen and that generate energy for the cell, were malfunctioning. The cells don’t have the energy to function or even live long-term. His cells don’t have the energy to have a seizure. Yes, the underlying problem was the birth defect affecting his mitochondria. But things really went downhill for Charlie last December & January when he had a series of horrific seizures. From Wiki - > [@wiki](#): > > The diagnosis of a mitochondrial DNA depletion syndrome (MDDS) was suspected by the end of October and was confirmed by a genetic test in mid-November that found he had two mutated versions of the gene coding for the RRM2B protein. The RRM2B gene is located in the cell nucleus but the protein for which it codes affects DNA in mitochondria. By mid-December, he began having persistent seizures as his brain function deteriorated, he had become deaf, and he had no ability to breathe or move or open his eyes on his own. His heart and kidneys were starting to fail as well, and it was not clear if he could experience pain or not.[2] > > \ > > By January 2017, the parents and medical team had decided to attempt an experimental therapy with nucleosides (the precursors of DNA that the child’s mitochondria cannot synthesise), but while the medical team was in the process of applying for ethical approval to do so, the child had a further round of severe seizures. Due to the development of likely severe epileptic encephalopathy secondary to these, doctors withdrew their support for attempting the experimental therapy as they felt that it would not be in his best interests, and began discussions with the parents about withdrawing life support and providing palliative care.[2] “Encephalopy” is a catch-all term for brain disease or injury. The ongoing seizure problem led to increasing brain damage in a vicious cycle. This is what caused the hospital to stop seeking experimental care and move to put Charlie on palliative care. The parents wished to fight this which they saw as giving up and sued the hospital to allow them to take Charlie so he could get the untested drugs that Dr. Hirano was offering. This is when Dr. Hirano really crossed the line, imo. He insisted - without ever examining Charlie personally, at the time - that the brain damage from the seizure probably wasn’t permanent and that his drug (which had never been tested on a child with Charlie’s variant of the disease could reverse the damage. Now the parents are blaming the hospital for not allowing them to start the treatment last April when Dr. Hirano started making his claims from a whole ocean away. > [@Broomstick](#): > > And, frankly, I think the parents share some of the blame for the current mess. When they didn’t get the answers they wanted (as opposed to those rooted in reality) they went to the press and stirred all this up. I understand the motivation, but they are in part responsible for some of the mess. No argument from me. ---
**Author:** ![drewder](https://avatars.discourse-cdn.com/v4/letter/d/57b2e6/32.png) [@drewder](https://boards.straightdope.com/u/drewder)\ **Post date:** [July 25, 2017, 8:52am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/225 "2017-07-25T08:52:34Z")
Yes how dare that doctor try and save a life, he should have gotten on board with making sure the baby died “with dignity”, whatever that means. ---
**Author:** ![GreenWyvern](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/greenwyvern/32/2834_2.png) [@GreenWyvern](https://boards.straightdope.com/u/GreenWyvern)\ **Post date:** [July 25, 2017, 10:25am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/226 "2017-07-25T10:25:40Z")
It seems that Hirano had a financial interest in the treatment he was offering. > [@](#): > > The American doctor who offered to help Charlie Gard admitted he had a “financial interest” in the proposed treatment method, Great Ormond Street Hospital (GOSH) has said. > > Michio Hirano said experimental drugs known as nucleoside therapy could give the critically ill baby a chance of survival, citing new results from a trial he had carried out on patients with a similar genetic disease. > > The children’s hospital, where the 11-month-old is on life support, said they were disappointed Dr Hirano had given evidence in court without having visited Charlie or having read his up-to-date medical information. > > Great Ormond Street raised concerns 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”. > > The doctor had also not "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,” the hospital said in a statement read out in the courtroom by Katie Gollop QC. > > “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.” > **[Professor who offered to help Charlie Gard had financial interest in drug he...](https://www.independent.co.uk/news/uk/home-news/charlie-gard-professor-michio-hirano-help-sick-baby-drug-financial-interest-gosh-nbt-great-ormond-street-hospital-a7858341.html)** > > Michio Hirano claims experimental drugs could have given the baby a chance of survival This quack should be held responsible for knowingly holding out false hopes to the parents in order to publicise and promote his own product. ---
**Author:** ![Steophan](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/steophan/32/9595_2.png) [@Steophan](https://boards.straightdope.com/u/Steophan)\ **Post date:** [July 25, 2017, 10:43am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/227 "2017-07-25T10:43:39Z")
> [@drewder](#): > > Yes how dare that doctor try and save a life, he should have gotten on board with making sure the baby died “with dignity”, whatever that means. He wasn’t trying to save a life, he was trying to experiment on a terminally ill , horribly suffering infant. Fortunately, he was prevented from doing so by the courts. And don’t pretend you don’t know what “dying with dignity” means. ---
**Author:** ![Steophan](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/steophan/32/9595_2.png) [@Steophan](https://boards.straightdope.com/u/Steophan)\ **Post date:** [July 25, 2017, 10:45am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/228 "2017-07-25T10:45:37Z")
> [@Tigers2B1](#): > > Or maybe now that its become ‘too late’ to use that money for Charlie – it can be moved to so that it supports patents who advocate for their children against the leviathan. “The leviathan” is the one that was advocating for the child. The parents were, almost certainly unintentionally due to being lied to, failing to act in his best interest. ---
**Author:** ![Steophan](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/steophan/32/9595_2.png) [@Steophan](https://boards.straightdope.com/u/Steophan)\ **Post date:** [July 25, 2017, 10:53am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/229 "2017-07-25T10:53:36Z")
> [@drewder](#): > > Since I suspect the parents wouldn’t piss on that hospital if it were on fire I very much doubt the money will go to them. From the BBC - > [@](#): > > In a statement, Mr Gard said: “Without the excellent care of the doctors at GOSH [Great Ormond Street Hospital] our son would not even be alive and not a day goes by when we don’t remember that.” From [here](http://www.bbc.co.uk/news/uk-england-london-40700294). Whilst you may be right about where the money goes, you’re wrong about their view on the hospital. ---
**Author:** ![drewder](https://avatars.discourse-cdn.com/v4/letter/d/57b2e6/32.png) [@drewder](https://boards.straightdope.com/u/drewder)\ **Post date:** [July 25, 2017, 12:34pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/230 "2017-07-25T12:34:53Z")
You do know that doctors running trials would not seek out impossible cases, rather they avoid them like the plague if they can because having patients die during their trial will make it less likely that they’ll get FDA approval or funding from drug companies. Sent from my SM-G955U using Tapatalk ---
**Author:** ![IvoryTowerDenizen](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/ivorytowerdenizen/32/17937_2.png) [@IvoryTowerDenizen](https://boards.straightdope.com/u/IvoryTowerDenizen)\ **Post date:** [July 25, 2017, 12:48pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/231 "2017-07-25T12:48:26Z")
> [@drewder](#): > > You do know that doctors running trials would not seek out impossible cases, rather they avoid them like the plague if they can because having patients die during their trial will make it less likely that they’ll get FDA approval or funding from drug companies. > > Sent from my SM-G955U using Tapatalk That’s not how trials work. The parameters for inclusion/exclusion of a patient are set ahead of time. The doctors don’t get to cherry pick patients along the way. If this child met the parameters for the trial (and depending on what type of trial it was- phase I trials are only looking for toxicity of the treatment, not efficacy, for example) there could be a motivation to include him. In fact, any patient with a rare disorder would be desirable, depending on what outcome the trial is anticipating. ---
**Author:** ![GreenWyvern](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/greenwyvern/32/2834_2.png) [@GreenWyvern](https://boards.straightdope.com/u/GreenWyvern)\ **Post date:** [July 25, 2017, 12:50pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/232 "2017-07-25T12:50:58Z")
> [@drewder](#): > > You do know that doctors running trials would not seek out impossible cases, rather they avoid them like the plague if they can because having patients die during their trial will make it less likely that they’ll get FDA approval or funding from drug companies. Unless, of course, the doctor **has a financial interest** in the treatment (as Hirano does) and wants to promote it. Any publicity is good publicity, and it would be very easy to find excuses when the child died. As it is, he is now well-known and in a good position to prey on the hopes of other desperate parents. And also if he has **zero interest in the child’s well-being** , as is clearly shown by the fact that he never even bothered to look at the recent scans or medical records, or read the statements of independent medical experts. ---
**Author:** ![Steophan](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/steophan/32/9595_2.png) [@Steophan](https://boards.straightdope.com/u/Steophan)\ **Post date:** [July 25, 2017, 12:51pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/233 "2017-07-25T12:51:40Z")
> [@drewder](#): > > You do know that doctors running trials would not seek out impossible cases, rather they avoid them like the plague if they can because having patients die during their trial will make it less likely that they’ll get FDA approval or funding from drug companies. The doctors who actually examined Charlie Gard rather strongly disagreed that this was not an impossible case. I’ll take their word for it, rather than the word of a doctor who didn’t even bother to read his medical notes. ---
**Author:** ![Broomstick](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/broomstick/32/246_2.png) [@Broomstick](https://boards.straightdope.com/u/Broomstick)\ **Post date:** [July 25, 2017, 1:01pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/234 "2017-07-25T13:01:37Z")
> [@drewder](#): > > Yes how dare that doctor try and save a life, he should have gotten on board with making sure the baby died “with dignity”, whatever that means. Dying with dignity mean not subjecting the dying patient to useless and futile treatment. I don’t know why people have trouble understanding that. It means focusing on relieving suffering even when you can’t cure what’s wrong with the patient. Again, I don’t understand why this is such a hard concept. Other than many people just can’t wrap their heads around certain facts, like we can not stave off death forever, we simply do not have useful treatments for some diseases, and some freak out with the sick and dying person is a baby. ---
**Author:** ![PatrickLondon](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/patricklondon/32/4422_2.png) [@PatrickLondon](https://boards.straightdope.com/u/PatrickLondon)\ **Post date:** [July 25, 2017, 4:49pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/235 "2017-07-25T16:49:00Z")
> [@IvoryTowerDenizen](#): > > If this child met the parameters for the trial Which, one would assume, should include a requirement for him not to be already irreversibly damaged, which was the point at issue. ---
**Author:** ![lilihob](https://avatars.discourse-cdn.com/v4/letter/l/a9adbd/32.png) [@lilihob](https://boards.straightdope.com/u/lilihob)\ **Post date:** [July 28, 2017, 6:38pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/236 "2017-07-28T18:38:55Z")
Charlie Gard has passed away. > **[Charlie Gard parents announce death of 'beautiful boy'](https://www.bbc.co.uk/news/uk-england-london-40752120)** > > The baby's parents, who fought a court battle over his treatment, say they are "so proud of him". I hope that this doesn’t leave a lasting stain on GOSH’s reputation, they do great work. I hope that the parents will be left to grieve and come to terms with it all. ---
**Author:** ![k9bfriender](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/k9bfriender/32/3283_2.png) [@k9bfriender](https://boards.straightdope.com/u/k9bfriender)\ **Post date:** [July 28, 2017, 6:46pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/237 "2017-07-28T18:46:17Z")
> [@lilihob](#): > > Charlie Gard has passed away. > [Charlie Gard parents announce death of 'beautiful boy' - BBC News](http://www.bbc.co.uk/news/uk-england-london-40752120) > > I hope that this doesn’t leave a lasting stain on GOSH’s reputation, they do great work. > I hope that the parents will be left to grieve and come to terms with it all. Doesn’t sound like it. > [@](#): > > “We had the chance but we weren’t allowed to give you that chance. Sweet dreams baby. Sleep tight our beautiful little boy.” [Previous page](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664.md?page=11)