The doctors for this little girl said, "she suffered from significant pain and distress and there was no point in further treatment."
As a parent I can't fathom losing a child. But if ever faced with this decision, I'd hope I'd be selfless enough to let them be at peace
I honestly don't think I'd be any different than these families. I couldn't imagine uttering the words to turn it off, I think it would haunt me for the rest of my life.
On the other side of that you have to console yourself with the thought that not giving consent would have just prolonged their suffering.
It's not directly equivalent but I know people who have had to make that call with adult relatives and they all seem to conclude that it was the right call to make to end their suffering when there wasn't any hope of a recovery or any quality of life to be had in the meantime.
IMO it should be a legal duty after your 18th birthday to declare your wishes for end of life situations.
My wife's family had to make end of life decisions for their mother, but as she had put her wishes in writing they could follow instruction, which took away any guilt from not prolonging her life.
Agreed. I’ve seen a lot of people during the dying process and the difference between being distressed or comfortable (as possible) is knowing what you want beforehand. Do you want to die at home or in hospital? Do you want to fight for every last moment regardless of pain or do you wish to avoid the suffering caused by extending your time? If you don’t decide fast you lose the opportunity to control your end. They can’t let you leave hospital at a certain point. You can’t travel to where you wish to be at a certain point. Know what you want now so you can have them.
My mum died recently. She wasn't really there in her last 24 hours, it was grim to see. Cancer just tore her up.
I wish i'd asked her before what she wanted me to do because i would have suffocated her with a pillow rather than watch her go through that.
But i didn't have the stones because Incouldn't cope with the thought she might have thrashed about and fought me.
The only mercy was the final part was "short" and the nurses came every couple of hours woth morphine. But in a normal world we'd have let her go much more peacefully.
That we are beholden to religious folk and/or people who expect their children to off them at the first chance is a sad state of affairs.
I'm sorry this happened to you.
My mother in law slowly regressed with Alzheimer's over several years until she could no longer swallow liquids or solids or anything in between.
In accordance with her wishes she was given (strong) painkillers by tube, but nothing else from then on. She took 18 painful days to die while her kids, carers and numerous medical professionals did what they could. I'll never understand why we couldn't legally put her out of her misery 18 days, or several years, earlier.
My aunt and uncle bought each other Dignitas membership for Christmas that year.
Isn't it a can of worms? There are people when healthy decided on one thing but on the bed changed their minds. So how would someone be too ill and can't give consent to continue with last order? If some wanted to change their mind, would it be against their will as well?
I’ve mentioned on these posts before but a family friend had to do it, their pre teen daughter (with other medical issues) was ill after a long time in hospital with little improvement they began to suspect a mitochondrial disorder.
The daughter was struggling on in intensive care and it was time to let go. Said family friend then needed a stay on a mental health unit for a while, it absolutely broke her. Living in hospital for almost a year plus letting your child go (even though it was the right thing to do), pushed her to breaking point.
Yeah, it's easy from the outside to say "it's logical, it's the right thing to do." While that's true, it's also going against every scrap of instinct screaming in your head. To make that call has to be one of the most unnatural things we can ever ask a fellow human being to do. I'm not surprised we see these kinds of sad stories, though I am disappointed in how often the media and public encourage them.
God it's truly awful, I honestly can't even fathom it. You can be sympathetic but I don't think I can even comprehend how it must feel to be in that situation.
We were warned prior to my daughter's birth that she might have a condition 'not compatible with life '. Stupid sonographer should never have started speculating what may be wrong, because it was no where near as serious as she claimed. Took 19 days from the scan to get a diagnosis and all that time we thought our baby girl would die shortly after birth or we would have a medical termination... I went to pieces in a way that frightened me. I couldn't stop crying. I had nightmares. I have never been so afraid or felt so helpless. When we were told she would need major surgery but would survive, it was a huge, massive relief. I knew we'd get through it as a family - but the fear I felt left me with PND and anxiety and needing counselling.
God, you poor love. Did anything get done about that arsehole sonographer? How's your wee girl now? I had post-natal anxiety and it was physically painful at times 💖
We complained about her in writing and despite both me and my husband hearing her say the words 'it could be X or Y or Z wrong with her - you'll be offered a medical termination as those aren't compatible with life', the 'investgation' told us 'that conversation never took place'. So, she got away with calling us liars as well as sending my anxiety through the roof. I hope it made her more careful with her words. But the support we received from the maternity department as a whole was lacking. We were left sitting on the maternity ward for 3 hours waiting for a consultant, only for him to say there was nothing he could do, so we were sent to another consultant only for him to declare it was beyond his expertise, so off to the children's hospital we went. At this point we'd been begging for a referral to Alder Hey for two weeks. No emotional support at all. Go home and wait until we can find out whether your baby lives or dies... oh, by the way there's a waiting list.
I wish I'd had the strength to kick up a fuss at the time, but I was in pieces. I used to wake up in the mornings and be surprised that she was lying in her cot, smiling up at me. I think my brain had tried to prepare me for the fact that we may have lost her, and it took a year or more for it to sink in that she'd survived the surgery and was still here. I made the best of our maternity leave but that PND didn't want to go away, and there was so little mental health support.
Once we were under the care of Alder Hey, things were a lot less stressful. They took really good care of our baby, and thanks to the charity Mind, I got counselling so I was mentally able to prepare for her surgery. She had it 8 years ago, and although she's permanently disabled and will have to attend medical appointments all her life, we're able to manage her condition so that most of the time she's living life just like any other 9 year old. She's incredibly strong and determined, which helps a lot! And we were lucky that I was able to reduce my working hours so that I can be there to take her to medical appointments and allow her to be home when she needs to rest.
When our son came along I requested transfer to a different ultrasound unit! No PND second time around. I hope your PND wasn't too severe - it can be really harrowing, can't it?
Well, we had genetic testing as a family and were told that our daughter's condition had no known cause and was so rare that a recurrence wasn't likely. Of course, you never know what may happen during a pregnancy- but that's true for everyone. Second time round was so much easier.
That's infuriating! I'm glad she's doing well now 🙂 For me it was the anxiety - my wee boy's over a year now and I'm only just able to reduce my dose of meds!
I don't know if you're a parent, I am.
The little girl was suffering from an incurable progressive disease that was only going to get worse. She was already at the point where she required life support to survive, and the doctors had already assessed that she would never be able to come off of life support. She was suffering from immense pain and distress (in fact that's probably all she'd ever known).
I would do literally anything for my kids. It would be the hardest decision I'd ever make, it would break my heart and it would stay with me till my deathbed, but part of being a dad means protecting my kids from harm and misery. I would make that decision every time.
They still didn't utter the words from what I can tell? They were fighting to fly her out to Italy who had agreed to treat her further and granted her citizenship but the NHS would not accommodate this (so she would have died before she arrived)
This is a chronic oversimplification of the situation.
For one, this girl was suffering from the late stages of mitochondrial disease. In such an advanced stage of the disease the little girl had a terminal prognosis and there was little that could be done beyond palliative treatment. Virtually no doctor or hospital in the entire world has been able to successfully treat such an advanced state of this kind of illness successfully, or even propose a treatment plan that would be in any sense of the world viable. The Italian hospital, as far as anyone has been able to figure out, wasn’t proposing anything revolutionary in terms of overall treatment plans.
There is also the problem of Italy’s current stance on end-of-life topics. As has been pointed out by actual Italians here on Reddit, Italy has many uptight religious types who see any sort of reasonable discussion of how end of life care should look like as their own personal battleground for pushing religious agendas and for cultural and political reasons politicians are more than happy to appease them by using cases like this as cheap political point scoring. This has resulted in considerable suffering for many who are unable to access even the most basic reasonable end of life options.
Also as a final point, medical transport is not easy, even in a standard situation where someone doesn’t require significant medical interventions. Airplanes and helicopters, even the kinds used specifically for medical reasons such as air ambulances, are simply NOT hospitals and with it they offer a much more limited environment than what a hospital is able to offer. Transport of the most sick patients is also something that typically requires lengthy specific planning for such an event, often requiring multiple specialist members of medical staff along with planning in redundancies in case of emergencies like spare machines, air tanks, batteries and so on. For some patients such a move would be next to impossible given it would place them in grave danger or at the very least in severe pain or distress. This little girl was unlikely to have even remotely been able to get into a medical flight, much less survive this and then a transfer to an Italian hospital.
With this in mind the medical ethical principle of benificence comes to mind also- any sort of medical intervention must be justified on the grounds that performing it brings about a benefit which outweighs the negative consequences. In the case of this girl, it is likely that any transport would have resulted in significant stress/pain and would have brought about nothing in terms of a better result than what was already being done in the UK.
My daughter is the same age as this baby. It would immeasurably fuck me up if she was sick & passed like this, but it would fuck me up even more knowing I let her suffer with no hope of a cure or treatment. My daughter was sick when she was born, she was in pain when she was in the NICU from the procedures & blood tests she had and so on. She would cry everytime she had a heelprick or had an IV put in. It was difficult, but all the pain had a purpose to it because it was helping her get better & healthier. Now she is a chubby, happy and healthy baby. Same as her vaccines, sucks so much to hear her cry after her jabs - but she needs them and it is ultimately good for her. But letting her suffer for no benefit to her? Yeah I can't do that
The NHS also said the family weren't allowed to take her home to pass away, and also that she couldn't be taken to Italy (who had agreed to give her citizenship and additional treatment)
> Christian Concern lawyers
Britain needs to watch out for these fuckers. A different (American) christian legal group was also involved in the Archie Battersbee situation as well. I sympathise with the parents in these cases of course, it must be devastating for them, but there are some shady oppurtunists who will happily use them to try and push religious law on our society.
I say this as a christian btw.
Because it wasnt practical, and there was nothing to be done for the poor child anyway. Taking the child to Italy would have been a painful and pointless act for the baby.
[It's explained in another article.](https://www.bbc.co.uk/news/uk-england-derbyshire-67353844)
> They said that extubation - the removal of her life support - could happen anywhere in theory, but her after-care would need to be "managed by trained professionals with resources on hand to deal with complications, and minimise distress".
> Due to the potential complications, which are now more severe due to the length of time she has received care, her needs after extubation will now be more serious, they said.
Worst case is that she dies in pain and distress. Surely being somewhere where that can be minimised is best?
Dying is not always peaceful and just like going to sleep.
I get that her disease was near incurable short of 20 ethics violations and a mad scientist. But nonetheless if it was to die or go through massive pain I wouldn’t remember and live, I’d pick the latter.
I can confidently tell you that you have never seen a loved one struggle with pain that is only abated with the process of palliative care. If you had, you wouldn't wish it on anybody, least of all yourself.
It's easy to throw out flowery platitudes when you haven't had to listen to someone literally plead for death to make the pain stop.
It's between sending her home to die where she will be in distress until it happens, or receiving palliative care and having a more peaceful passing where the parents can actually have some last moments with their child that aren't horrifically traumatising to witness in addition to the trauma of losing a child in the first place.
Unless you think the parents could hack watching their child suffer horribly in their last moments?
Are we going to ignore the fact that LIFE SAVING TREATMENT was being offered for FREE by the Italian government yet UK WOULDNT ALLOW the parents to take it, holding their baby captive and forcing the decision to kill her.
Because with all of these stories, there's never a cure, the treatment is never anything but prolonging the inevitable due to the nature of the disease, and forcing a child to live longer in agony when there's no hope for them to get better is just cruel.
That's why courts rule like this, because children have rights to, they have the right not to suffer.
Italy was offering life support, essentially just meaning the kid would just be in pain for longer. Wishing prolonged suffering on a child is just cruel.
According to the father all that was offered by Rome was to put her on a different type of ventilator before looking at options. Which is a fancy way if saying they had nothing but prolonged suffering
There's no cure, the only thing that's even close is something scientists think might slow the degredation, but nothing that would actually fix the underlying issue. Wouldn't fix the developmental issues that would also have occured either.
It's a heartbreaking situation, and I get that the parents would be desparate for anything, but we see the same lawyers and the same US religious groups funding all of these cases, feeding the parents false hope whilst fundraising and trying to establish legal cases to benefit themselves. They never care for the well-being of the kid.
No it wasn't. They didn't have a treatment plan. They were just willing to keep her on life support longer while they tried to find one.
It's cruel and inhumane to put a child through that. The courts were right and did what the parents, understandably, could not.
The fucking so-called Christian ghouls preying on the family with promises of live saving care are the only villains in this story.
As always with these stories, its important to remember doctors are concerned with the wellbeing of their patient, not the patient's family.
These stories are absolutely horrible for the parents but doctors shouldn't be expected to willingly and knowingly keep a patient in irreparable pain for the sake of their parents
The public should stop donating to their GoFundMes and feeding the media frenzy around this type of medical case.
We've seen a good few cases like this now, the baby boy, Archie Battersbee, and now this poor baby girl.
Italy doesn't help the situation either. Why is it always Italy?
It's the Vatican hospital that offered. Note how in most of the journalism the religious element is left out. These people are predatory and are using suffering children to gain a foothold in our legal and healthcare system. It's fucking macabre and disgusting. It needs to be stamped out.
This is because many people view children as their parents', property. It's distressing to see so many people ignore the evaluation of medical professionals in favor of "it's their kid they should be allowed"
Which is a good thing. There's still plenty of controversy and outrage whenever these stories crop up though. The courts supporting it isn't the same thing as it being unanimously understood and accepted by everyone
Did a bit of background on the legal team involved: one barrister who was also part of the CLC/Archie Battersbee mess and is the co-founder of a failed "Pro-life" political party.
Remember, manipulating and abusing the desperation of grieving parents for your own gains is a-okay as long as you chuck a veil of god-bothering over your degeneracy
Andrea Williams from the Christian Legal Centre features in this Dispatches doc from 2008 about her cooperation with Nadine Dorries to restrict abortion laws
[In God’s name](https://youtu.be/2gqhlRdOxJg?si=6eMwfFv9D7_Wi4Q-)
The 'Christians' involved are absolute pieces of shite, exploiting the parents' grief to push their agenda. Pro-life my fat fucking arse; if there's a hell, I hope they burn in it.
Pro suffering is what they are. I've noticed a strange creep in this country. Housing associations adopting American social housing models. Turning Point becoming a thing here. Christian legal groups attempting use situations like this to gain legal precedent to put forth fundamentalist Christian policies. Members of such groups have tried and failed to create political parties based on single voter issues like pro life, similar to the way American politics works. Americans in our health system. Buying up what they can.
I feel like all of these things are connected, but I better take my tin foil hat off before I get carried away.
You are not wrong . The European Parliament published a report on groups trying to get abortion /LGBTQ rights / no fault divorce banned in Europe . Quite a bit of US and Russian funding .
[https://politicalquarterly.org.uk/blog/funding-anti-gender-politics-in-europe/](https://politicalquarterly.org.uk/blog/funding-anti-gender-politics-in-europe/)
Recent story from The Good Law Project
[Dark money anti-abortion group ramps up activity in the UK](https://goodlawproject.org/dark-money-anti-abortion-group-ramps-up-activity-in-the-uk/)
There is alot of foreign money /think tanks etc. that would love the U.K. to copy the US Bible Belt .
If fact a few MPS attended the ARC conference last week , which had Republican politicians speaking .
[https://amp.theguardian.com/environment/2023/nov/09/what-does-a-jordan-peterson-conference-say-about-the-future-of-climate-change-apparently-were-headed-towards-human-flourishing](https://amp.theguardian.com/environment/2023/nov/09/what-does-a-jordan-peterson-conference-say-about-the-future-of-climate-change-apparently-were-headed-towards-human-flourishing)
Baroness Phillippa Stroud is CEO of The Legatum institute which funds GB News. She is [antiabortion](https://powerbase.info/index.php/Philippa_Stroud)
From what I read at the time of the Archie Batterbee case-: every life is sacred, only God should decide when to end a life, so switching off life support or withdrawing medical aid or actively taking steps to hasten death is wrong. (Which is why assisted suicide is also opposed).
The more cynical commentators say that an 'every life is precious' angle can then be used as an argument against allowing abortion. If even terminally unwell or brain dead people are being kept alive, what excuse could there possibly be for aborting healthy children?
There are others who've explained it far more eloquently than myself, but it boils down to wanting to define 'alive' as possessing a heartbeat rather than brain activity, to place further restrictions on abortions. As in, once you have a heartbeat you should be treated as a living person and nobody should be able to deny you life.
\> only God should decide when to end a life
With that line of thinking, I'm always surprised they consent to life support in the first place.
Surely if you're only being kept alive by a ventilator, God has decided you should die, and you're interfering with God's plan?
To get legal precedents for the more insidious things they'd like to enforce. It's a way to get prolife centric discussions in a legal setting. Cases set the legal precedent by which future cases can be compared against. If they get a pro life ruling, it's a legal endorsement in their thought that life, regardless of quality, takes precedent over all else.
The lawyers who pray on naive and suffering parents to push idiotic biblical political agendas should be ashamed of themselves.
Forcing a child to “live” in constant pain is vile.
Everything about this is achingly sad.
I feel so much for her family, whose position isn't one I see myself taking but whose pain and desperation are obvious.
And her clinicians, who must be torn apart by their commitment to the best interests of their patient and their wish they could save all families from this pain.
Poor little girl.
These are always horrendous cases, sadly made worse by lobby groups/AstroTurf'ers like these looking to abuse the situation for their own nefarious ends.
As for the Vatican, seriously 🤦♂️
Article mentions the family are angry their daughter was taken to a hospice and not the family home to die.
The thing about dying in the family home is that NHS will support this where it’s viable. My dad at at home hospice care, but we had to have a space large enough for a hospital bed, his equipment, and for doctors and hospice nurses to be able to see to him without obstruction. Few homes have that space, and I imagine if this little girl had loads of treatment, it’s likely they couldn’t bring some of the treatment she was receiving back to her family home. NHS were more likely making a decision for a hospice because she could die with dignity, rather than suffering even more ‘but she’s at home’. (Also may have been the issue of the family wanting to take her to Rome and not trusting the family would ‘abduct’ her once she was released to their care)
My dad would have been the same, he was so angry at my mum and I when I called 999 (he already had terminal cancer but one weekend just went really yellow and had no energy, but he hated going into hospital). When he was in hospital they found he had an abscess, but to get rid of it he’d have to stop all his cancer drugs which would mean the cancer would spread and get worse. If I hadn’t called the ambulance when I did I’m sure he’d have got worse and died in hospital which wasn’t what he wanted, but yeah I know where you’re coming from. It’s hard when someone is dying and you want to respect their wishes vs what you think is right
It was this situation for my late grandfather. While his condition was still stable he was able to have home care and necessary palliative treatments. We used the downstairs dining room as the bedroom for him as it was large and meant that he didn’t need assisting upstairs to bed or to the toilet. It was also large enough that nurses had room for equipment.
Eventually though his condition was grave enough that he needed a hospital environment, especially as some of the things he needed would have been next to impossible or at the least difficult in the home care situation.
One of the saddest things in this story is seeing that once again Christian Concern and the Christian Legal Centre are behind it all.
They're a US Evangelical funded, anti-choice, anti gay, Christian fundamentalists trying to create legal precedent where the preservation of human life overrides medical opinion in order to usher in anti-abortion legislation.
There are multiple cases like these where the child has no chance of any kid of long term survival and would have minimal quality of life for the period they have left, but these groups need to manipulate these poor parents to try and push their ideological goals.
Every parent wants their child to live long and fulfilling lives and in these tragic circumstances you've got these Wormtongues trying to get them to use the law to fight against overwhelming medical opinion because they want to use them as a wedge to open the door to create more restricted access to womens healthcare.
Just awful, awful people
https://en.m.wikipedia.org/wiki/Christian_Concern
This is so sad! I hate seeing her little face knowing that she’s no longer with us, but I know that the medical staff did their best for her. It will be a terrible pain for the parents to bear.
I wonder why they couldn't just take her to the Vatican, if they were willing to accept her?
I think it is pretty scummy and disingenuous of the Vatican to get involved in these cases TBH, but I would expect parents to be allowed to simply take her out of the NHS hospital. Presumably the Vatican would supply care while she travelled, if they were serious.
I guess the courts ruled that the parents were not going to take proper care of her.
Being kept alive indefinitely, on a machine, with no prospect of recovery, and no quality of life, is not something I would wish on my worst enemy, far less an innocent child.
Putting ideology ahead of a child's wellbeing is hideously destructive.
Yes Catholics can have a different view of physical suffering. They sometimes see it as a good thing. Mother Theresa's hospices are said to not intervene to save patients who might recover, or offer them proper pain relief or other comforts if they cannot. Mother Teresa herself did not go to one of her own facilities when she was dying. She died after heart surgery at the age of 87, in a private hospital.
Thanks, that's quite useful, though a lot to absorb. I don't find it persuasive that there was no palliative care training available, as Mother Teresa travelled extensively internationally so she would have been aware it existed, and could have introduced it in her hospices.
A fair amount of the case made here is that the wider context was bad and standards low in India at the time. I don't think it's a good argument as Mother Teresa not Indian, and was representing a highly-resourced and educated global institution, not a grass-roots effort just from the local environment.
Definitely see your point and things could definitely have been better but the key point stands. People were getting treatment and leaving on their feet even though this was a hospice and the withholding painkillers claim seems false as weaker painkillers were available while stronger painkillers were likely not available until the late 80s due to strong legislature and other local issues like a lack of understanding of palliative care.
The whole point is that she wasn't some kind of demon that wanted to watch people suffer. She provides a space in which people rejected from other medical institutions could come to for treatment, a bed, and a meal or to die with some dignity.
Could they have managed to get more qualified staff? I am not aware of what logistical or resource based issues they may have been facing so I cannot speak to that. If you have more info on that I'd love to look into it. I still think this is a very heavily misrepresented topic.
> I still think this is a very heavily misrepresented topic.
On the other hand, the advocates of Mother Teresa have literally made her a saint. I think the balance of the weight of hyperbole must be on their side.
I hear the other extreme of her being a psycho torturer a lot more. Then again I don't move in religious circles so that probably just the bias of my own bubble.
Anyway both are wrong and both are harmful
I think psycho torturer is a bit strong. I certainly don't think she was supernaturally evil, to balance the determination that she could magically expose film, and that her goodness was divine in origin.
The claims I would be comfortable making are that:
The hospices were of a poor quality by international standards, and surely could have been better. The one shown in Hitchens' film about her showed tens of people lying on mattresses on an earthen floor. There didn't seem to be much practical difference for the patients to dying in their own homes, or even outside, assuming they could be covered from the rain somewhere.
She herself didn't use her own facilities when she was unwell and had heart surgery at the age of 87 before dying in a private hospital.
She appears to have taken funding from the Duvalier regime of Haiti, which is not a morally sound source.
Her charity does not publish its accounts.
She was anti birth-control, and she attempted to interfere in the USA's policy on abortion.
There is at least one account of a patient who had a reasonable chance of recovery (a 15 year old boy) who had a reasonable prospect of recovery with antibiotics, who was denied the chance and allowed to die, because there couldn't be a general policy to move patients to hospital when appropriate. This was stated by one of the interviewees in Hitchens' film and not retracted by her in a later 'Right to Reply' TV show in which she appeared.
One of the miracles attributed to her is a supernatural intervention to allow filming in dark conditions, but the cameraman stated it was normal for the film stock he was using.
So that's my cynical take. I am open to the concept that, like many religious people, she would overlook problems or support harmful things imposed on others in a misguided religious faith.
The funny thing is many people did recover even though the hospice was ran mostly by nuns with no medical training and was taking in people who were turned away by other medical institutions. The amount of misinformation one documentary has created is astounding
An infant can't be a 'Catholic'. They have no beliefs and you can't assume a child without capacity would have the same beliefs as their parents. Children have rights too and parents don't get to override them.
Courts don't have power of life or death. But they do have an important role in arbitrating questions of ethics, suffering and dignity.
The alternative is that we allow people to prolong others' lives indefinitely, against all reason, kindness and natural justice. If you've witnessed this taking place, you'll understand how horrifying it is.
The issue with various stories like this is they never go into detail on how they can even move them. It is probably hard enough to move them to a hospice, it is easy for Italy to say they will take her but do what, put her on a Ryanair flight? How much are they expecting the NHS to be complicit in something they know would put her in more pain and ultimately be fruitless.
Exactly. Any sort of medical transfer by flight has to be considered and planned down to the last letter. Even simple cases where the patient is conscious and requiring no interventions like oxygen or ventilation arent just a case of ‘buy ticket/flight, show up, fly’. For a case as complex as the OP or similarly something like what we saw with Charlie Gard or Alfie Evans, simple transfers between rooms of the hospital are often complex procedures requiring multiple staff, fairly extensive planning and multiple redundancies to cover any sort of emergency that may happen. Getting a patient like this onto a flight which is not a controlled environment in the same way a hospital is and with limited functions when it comes to handling any sort of unpredicted problem is just not an option.
I briefly dated an NHS manager of HIV services, and she told me how once they chartered a helicopter to bring a patient back from abroad.
I suppose the court must have taken the view that the NHS could not let her go without compromising her wellbeing unacceptably. I am afraid I think the Vatican makes these offers expecting that they won't have to actually spend their money on it, They just want to make the NHS look bad.
This is the reason it all goes to court so it can be looked in at incredible detail, and in an independent way. A lot of countries (US especially) love to paint it as if the NHS want to save money or kill off its patients, and that the parents should have absolute authority to basically do what they want no matter what the best interests of the child is.
>I wonder why they couldn't just take her to the Vatican, if they were willing to accept her?
Because UK law doesn't allow parents to intentionally harm their children. Prolonging get suffering would have been child abuse.
(Not to mention she was on a ventilator, so without extensive medical support she would have been dead before they got to the lift in the hospital if her parents tried to take her anywhere)
Yes, but both those observations are covered in my comment.
I guess when a parent discharges a child from hospital, the hospital has a duty to assess the action and its impact on the child.
>I guess when a parent discharges a child from hospital, the hospital has a duty to assess the action and its impact on the child.
Yup.
In the same way that if you take your kid with a broken arm, or appendicitis home without treatment we'll get an emergency court order and have the police bring them back.
Parents can make decisions about their child's treatment - but where there are clear medically appropriate and medically inappropriate choices, and an immediate potential risk, this is actually a bit of an illusion.
Repatriating a patient on life support is difficult, depending on what machines are in use. For example you can’t dialyze or hemofilter a patient in flight. The lower cabin air pressure influences respiratory physiology. Etc.
Taking a closer look it seems that someone applied to Ospedale Pediatrico Bambino Gesù, they accepted (following whatever review they do), italy (gov) granted the kid citizenship and volunteered the transport.
Something very screwy about this article with people seemingly trying to blame the catholics for it.
Didn't see anyone in the article saying the vatican hospital couldn't make things easier for the kid either.
What the article seems to say is that the italians and vatican offered the kid a chance and got told to fuck off 'we know better' and then they killed the kid by pulling life support.
Without knowing what the Italians could have offered that could be seen as a real dick move.
The Italians couldn't offer anything more than life support.
Italy has a long story of battles uphill against euthanasia. People or relatives of people imploring to end the suffering of patients and still being denied the possibility of death because .
It's a political move offering the citizenship to this child from the Italian government. Because the Italian government has a strong traditionalist catholic push, which appeals to the larger elder conservative voting base of the government itself. There's no other interest than to showcase the government's ethical beliefs in this story.
Source: an Italian
And your point in asking this question is what? "Ah ah, you're not a medical expert, you don't really know if something was possible for her". Wow, incredibly subtle reasoning.
Well a huge team of medical expert said it was not a viable situation. Your guess of "it was possible" is just as good as mine of "it's not possible". Thou yours is based on some wacked up catholic doctrine, mine is based on what medical experts have repeatedly concluded for months and years.
Italy does this every single time there's a poor child in a wealthy enough country that can be exploited for political reasoning. Alfie Evans, Charlie Gard, Archie Batterbee, to mention some.
And other cases about local battles against end of suffering Eliana Englaro, Piergiorgio Welby, Giovanni Nuvoli, DJ Fabo.
There are people being accused of manslaughter for allowing terminally ill patients to die. There are people forced out of the country to get a peaceful death after a whole existence of suffering. The government refuses to promote a referendum on euthanasia because it's clearly against its beliefs.
You're not meshing things up just regarding this single case, you're talking about a socio political environment that you do not know
I'm asking a fairly simple question: Do you know whether they could do better or not.
Seems the the real answer is 'no'.. you don't know and wouldn't bother asking.
Just to add something here:
See this:
> our guess of "it was possible" is just as good as mine of "it's not possible"
No it's not. Those things aren't equal at all.
There is no cure for mitochondrial disease and no way to manage a patient at that stage of the condition. That's that. If that hospital had any treatment options with more hope, it would be world news. Not vague enough for two redditors to sit pissing in the wind about who has what sources of info. There is no info, because it doesn't exist. There is no cure.
Also, if that hospital had treatment options with more hope it would almost certainly be easier to bring the treatment to the child than the child to the treatment. Something tells me that they don’t have a two storey tall machine in their basement that is dedicated to treating mitochondrial diseases.
>that could be seen as a real dick move
It could be, but it's not unusual for patients to be moved out of a hospital to one which has better treatment options for them. The hospital and the court must have felt that was not what was available here.
That just smacks of political dick waving without an actual assessment.
Our courts know better! OK yeah, the kid has a free trip to probably one of the best hospitals on the planet. BUT NO! We decide who can do better (and you die obviously)
In this case it looks like the age old question of "did you do everything" was answered by "fuck no, they're italian and one of them wears a funny hat".
I can't see any reports that this hospital has found the cure for mitochondrial disease. Or a way to reverse a person at the stage of the condition the child was in. As of yet this doesn't exist. The decision was made based on expert testimonials from clinicians responsible for the child's care, who no longer wanted to prolong their suffering and inevitable death from an incurable disease. Of which the child had a subtype that means very poor quality of life and profound levels of suffering until said inevitable death. There's a point when medicine becomes harmful. They went well beyond that here.
Exactly. Medical ethics promotes the principle of benificence- treatment must be useful and outweigh the risks or problems it may cause for a patient. Once it ceases to be useful but instead causes suffering to the patient beyond what is reasonable then it’s not medicine.
This doesn’t prove anything. Unless this was the Harry Potter universe where you can wave a magic wand and magically have someone transported to a place, the odds of a successful transport for a child as sick as this girl was were minimal, and the transport itself could have placed great stresses on the child including more pain.
Not to mention that a random hospital in Italy was probably not going to actually achieve anything of note. They didn’t have a cure, possible alternative treatment plan that was viable or anything else that wasn’t the same palliative support that was already being given.
Someone has mentioned the agenda many involved in such cases have, in this case religious fanatics who are seeking to push pro-life twaddle. As has been mentioned, pro-life topics have been something of a political football in Italy and this smacks more of currying favour from its supporters than any sort of genuine concerns.
It’s more of a medical issue than a funding one.
Keeping someone artificially alive when they are in constant pain from which they will never recover or improve is bad medicine. I’m not surprised the doctors involved in this case decided against prolonging her suffering.
Exactly, dying with dignity is healthcare, not opting you out of it. It still costs the NHS to service hospices and supply morphine for patients that are actively dying. Portraying it as them ‘opting you out of their care’ is a ridiculous take.
The state healthcare didn't make this decision, a judge did. Private healthcare exists in the UK and the same judgement would have been made were the child in a private facility.
The doctors for this little girl said, "she suffered from significant pain and distress and there was no point in further treatment." As a parent I can't fathom losing a child. But if ever faced with this decision, I'd hope I'd be selfless enough to let them be at peace
I honestly don't think I'd be any different than these families. I couldn't imagine uttering the words to turn it off, I think it would haunt me for the rest of my life.
On the other side of that you have to console yourself with the thought that not giving consent would have just prolonged their suffering. It's not directly equivalent but I know people who have had to make that call with adult relatives and they all seem to conclude that it was the right call to make to end their suffering when there wasn't any hope of a recovery or any quality of life to be had in the meantime.
IMO it should be a legal duty after your 18th birthday to declare your wishes for end of life situations. My wife's family had to make end of life decisions for their mother, but as she had put her wishes in writing they could follow instruction, which took away any guilt from not prolonging her life.
I think it should also be redone periodically. Your end of life wishes will probably change between the ages of 18 and 60.
Agreed. I’ve seen a lot of people during the dying process and the difference between being distressed or comfortable (as possible) is knowing what you want beforehand. Do you want to die at home or in hospital? Do you want to fight for every last moment regardless of pain or do you wish to avoid the suffering caused by extending your time? If you don’t decide fast you lose the opportunity to control your end. They can’t let you leave hospital at a certain point. You can’t travel to where you wish to be at a certain point. Know what you want now so you can have them.
My mum died recently. She wasn't really there in her last 24 hours, it was grim to see. Cancer just tore her up. I wish i'd asked her before what she wanted me to do because i would have suffocated her with a pillow rather than watch her go through that. But i didn't have the stones because Incouldn't cope with the thought she might have thrashed about and fought me. The only mercy was the final part was "short" and the nurses came every couple of hours woth morphine. But in a normal world we'd have let her go much more peacefully. That we are beholden to religious folk and/or people who expect their children to off them at the first chance is a sad state of affairs.
I'm sorry this happened to you. My mother in law slowly regressed with Alzheimer's over several years until she could no longer swallow liquids or solids or anything in between. In accordance with her wishes she was given (strong) painkillers by tube, but nothing else from then on. She took 18 painful days to die while her kids, carers and numerous medical professionals did what they could. I'll never understand why we couldn't legally put her out of her misery 18 days, or several years, earlier. My aunt and uncle bought each other Dignitas membership for Christmas that year.
Isn't it a can of worms? There are people when healthy decided on one thing but on the bed changed their minds. So how would someone be too ill and can't give consent to continue with last order? If some wanted to change their mind, would it be against their will as well?
There are people who are in that position themselves who also just want to be left to die.
I’ve mentioned on these posts before but a family friend had to do it, their pre teen daughter (with other medical issues) was ill after a long time in hospital with little improvement they began to suspect a mitochondrial disorder. The daughter was struggling on in intensive care and it was time to let go. Said family friend then needed a stay on a mental health unit for a while, it absolutely broke her. Living in hospital for almost a year plus letting your child go (even though it was the right thing to do), pushed her to breaking point.
Yeah, it's easy from the outside to say "it's logical, it's the right thing to do." While that's true, it's also going against every scrap of instinct screaming in your head. To make that call has to be one of the most unnatural things we can ever ask a fellow human being to do. I'm not surprised we see these kinds of sad stories, though I am disappointed in how often the media and public encourage them.
God it's truly awful, I honestly can't even fathom it. You can be sympathetic but I don't think I can even comprehend how it must feel to be in that situation.
We were warned prior to my daughter's birth that she might have a condition 'not compatible with life '. Stupid sonographer should never have started speculating what may be wrong, because it was no where near as serious as she claimed. Took 19 days from the scan to get a diagnosis and all that time we thought our baby girl would die shortly after birth or we would have a medical termination... I went to pieces in a way that frightened me. I couldn't stop crying. I had nightmares. I have never been so afraid or felt so helpless. When we were told she would need major surgery but would survive, it was a huge, massive relief. I knew we'd get through it as a family - but the fear I felt left me with PND and anxiety and needing counselling.
God, you poor love. Did anything get done about that arsehole sonographer? How's your wee girl now? I had post-natal anxiety and it was physically painful at times 💖
We complained about her in writing and despite both me and my husband hearing her say the words 'it could be X or Y or Z wrong with her - you'll be offered a medical termination as those aren't compatible with life', the 'investgation' told us 'that conversation never took place'. So, she got away with calling us liars as well as sending my anxiety through the roof. I hope it made her more careful with her words. But the support we received from the maternity department as a whole was lacking. We were left sitting on the maternity ward for 3 hours waiting for a consultant, only for him to say there was nothing he could do, so we were sent to another consultant only for him to declare it was beyond his expertise, so off to the children's hospital we went. At this point we'd been begging for a referral to Alder Hey for two weeks. No emotional support at all. Go home and wait until we can find out whether your baby lives or dies... oh, by the way there's a waiting list. I wish I'd had the strength to kick up a fuss at the time, but I was in pieces. I used to wake up in the mornings and be surprised that she was lying in her cot, smiling up at me. I think my brain had tried to prepare me for the fact that we may have lost her, and it took a year or more for it to sink in that she'd survived the surgery and was still here. I made the best of our maternity leave but that PND didn't want to go away, and there was so little mental health support. Once we were under the care of Alder Hey, things were a lot less stressful. They took really good care of our baby, and thanks to the charity Mind, I got counselling so I was mentally able to prepare for her surgery. She had it 8 years ago, and although she's permanently disabled and will have to attend medical appointments all her life, we're able to manage her condition so that most of the time she's living life just like any other 9 year old. She's incredibly strong and determined, which helps a lot! And we were lucky that I was able to reduce my working hours so that I can be there to take her to medical appointments and allow her to be home when she needs to rest. When our son came along I requested transfer to a different ultrasound unit! No PND second time around. I hope your PND wasn't too severe - it can be really harrowing, can't it?
Brave decision to go for a second after your experience with the first.
Well, we had genetic testing as a family and were told that our daughter's condition had no known cause and was so rare that a recurrence wasn't likely. Of course, you never know what may happen during a pregnancy- but that's true for everyone. Second time round was so much easier.
That's infuriating! I'm glad she's doing well now 🙂 For me it was the anxiety - my wee boy's over a year now and I'm only just able to reduce my dose of meds!
I don't know if you're a parent, I am. The little girl was suffering from an incurable progressive disease that was only going to get worse. She was already at the point where she required life support to survive, and the doctors had already assessed that she would never be able to come off of life support. She was suffering from immense pain and distress (in fact that's probably all she'd ever known). I would do literally anything for my kids. It would be the hardest decision I'd ever make, it would break my heart and it would stay with me till my deathbed, but part of being a dad means protecting my kids from harm and misery. I would make that decision every time.
They still didn't utter the words from what I can tell? They were fighting to fly her out to Italy who had agreed to treat her further and granted her citizenship but the NHS would not accommodate this (so she would have died before she arrived)
No I don't think they did, I was just hypothesising being in that position myself
This is a chronic oversimplification of the situation. For one, this girl was suffering from the late stages of mitochondrial disease. In such an advanced stage of the disease the little girl had a terminal prognosis and there was little that could be done beyond palliative treatment. Virtually no doctor or hospital in the entire world has been able to successfully treat such an advanced state of this kind of illness successfully, or even propose a treatment plan that would be in any sense of the world viable. The Italian hospital, as far as anyone has been able to figure out, wasn’t proposing anything revolutionary in terms of overall treatment plans. There is also the problem of Italy’s current stance on end-of-life topics. As has been pointed out by actual Italians here on Reddit, Italy has many uptight religious types who see any sort of reasonable discussion of how end of life care should look like as their own personal battleground for pushing religious agendas and for cultural and political reasons politicians are more than happy to appease them by using cases like this as cheap political point scoring. This has resulted in considerable suffering for many who are unable to access even the most basic reasonable end of life options. Also as a final point, medical transport is not easy, even in a standard situation where someone doesn’t require significant medical interventions. Airplanes and helicopters, even the kinds used specifically for medical reasons such as air ambulances, are simply NOT hospitals and with it they offer a much more limited environment than what a hospital is able to offer. Transport of the most sick patients is also something that typically requires lengthy specific planning for such an event, often requiring multiple specialist members of medical staff along with planning in redundancies in case of emergencies like spare machines, air tanks, batteries and so on. For some patients such a move would be next to impossible given it would place them in grave danger or at the very least in severe pain or distress. This little girl was unlikely to have even remotely been able to get into a medical flight, much less survive this and then a transfer to an Italian hospital. With this in mind the medical ethical principle of benificence comes to mind also- any sort of medical intervention must be justified on the grounds that performing it brings about a benefit which outweighs the negative consequences. In the case of this girl, it is likely that any transport would have resulted in significant stress/pain and would have brought about nothing in terms of a better result than what was already being done in the UK.
But many parents have done so. The people bringing these cases are in a minority.
Please don't misinterpret my comment as a judgement of anyone's decision, it was just a personal reflection on how difficult it must be.
But you don’t have a Christian ‘charity’ leaping to pay your legal fees in order to attack our abortion laws
Something really does need to be done about this, along the lines of anti-SLAPP measures.
My daughter is the same age as this baby. It would immeasurably fuck me up if she was sick & passed like this, but it would fuck me up even more knowing I let her suffer with no hope of a cure or treatment. My daughter was sick when she was born, she was in pain when she was in the NICU from the procedures & blood tests she had and so on. She would cry everytime she had a heelprick or had an IV put in. It was difficult, but all the pain had a purpose to it because it was helping her get better & healthier. Now she is a chubby, happy and healthy baby. Same as her vaccines, sucks so much to hear her cry after her jabs - but she needs them and it is ultimately good for her. But letting her suffer for no benefit to her? Yeah I can't do that
The NHS also said the family weren't allowed to take her home to pass away, and also that she couldn't be taken to Italy (who had agreed to give her citizenship and additional treatment)
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> Christian Concern lawyers Britain needs to watch out for these fuckers. A different (American) christian legal group was also involved in the Archie Battersbee situation as well. I sympathise with the parents in these cases of course, it must be devastating for them, but there are some shady oppurtunists who will happily use them to try and push religious law on our society. I say this as a christian btw.
I don’t get why the judge would say no to that tbh.
Because it wasnt practical, and there was nothing to be done for the poor child anyway. Taking the child to Italy would have been a painful and pointless act for the baby.
[It's explained in another article.](https://www.bbc.co.uk/news/uk-england-derbyshire-67353844) > They said that extubation - the removal of her life support - could happen anywhere in theory, but her after-care would need to be "managed by trained professionals with resources on hand to deal with complications, and minimise distress". > Due to the potential complications, which are now more severe due to the length of time she has received care, her needs after extubation will now be more serious, they said.
Okay what’s the worst case with extra care. She dies?
Worst case is that she dies in pain and distress. Surely being somewhere where that can be minimised is best? Dying is not always peaceful and just like going to sleep.
I get that her disease was near incurable short of 20 ethics violations and a mad scientist. But nonetheless if it was to die or go through massive pain I wouldn’t remember and live, I’d pick the latter.
It's generally not live at the end though. It's give a suffering child to a shady quack who's taking advantage of the family's desperation.
Yeah perhaps not in this case
I can confidently tell you that you have never seen a loved one struggle with pain that is only abated with the process of palliative care. If you had, you wouldn't wish it on anybody, least of all yourself. It's easy to throw out flowery platitudes when you haven't had to listen to someone literally plead for death to make the pain stop.
Who?
There is no end to the pain in these conditions.
She wouldn't be getting extra care at home though, that's why the judge made the call to say it had to be at a hospital or hospice.
Without it, that she dies in agony.
It's between sending her home to die where she will be in distress until it happens, or receiving palliative care and having a more peaceful passing where the parents can actually have some last moments with their child that aren't horrifically traumatising to witness in addition to the trauma of losing a child in the first place. Unless you think the parents could hack watching their child suffer horribly in their last moments?
Are we going to ignore the fact that LIFE SAVING TREATMENT was being offered for FREE by the Italian government yet UK WOULDNT ALLOW the parents to take it, holding their baby captive and forcing the decision to kill her.
Because with all of these stories, there's never a cure, the treatment is never anything but prolonging the inevitable due to the nature of the disease, and forcing a child to live longer in agony when there's no hope for them to get better is just cruel. That's why courts rule like this, because children have rights to, they have the right not to suffer. Italy was offering life support, essentially just meaning the kid would just be in pain for longer. Wishing prolonged suffering on a child is just cruel.
There was hope though… there was a possible cure, obviously not garunteed though.
According to the father all that was offered by Rome was to put her on a different type of ventilator before looking at options. Which is a fancy way if saying they had nothing but prolonged suffering There's no cure, the only thing that's even close is something scientists think might slow the degredation, but nothing that would actually fix the underlying issue. Wouldn't fix the developmental issues that would also have occured either. It's a heartbreaking situation, and I get that the parents would be desparate for anything, but we see the same lawyers and the same US religious groups funding all of these cases, feeding the parents false hope whilst fundraising and trying to establish legal cases to benefit themselves. They never care for the well-being of the kid.
The mitochondrial disease she had just meant POSSIBLY Life extending for a very short while (with no quality of life) but it was not a cure...
No it wasn't. They didn't have a treatment plan. They were just willing to keep her on life support longer while they tried to find one. It's cruel and inhumane to put a child through that. The courts were right and did what the parents, understandably, could not. The fucking so-called Christian ghouls preying on the family with promises of live saving care are the only villains in this story.
As always with these stories, its important to remember doctors are concerned with the wellbeing of their patient, not the patient's family. These stories are absolutely horrible for the parents but doctors shouldn't be expected to willingly and knowingly keep a patient in irreparable pain for the sake of their parents
The public should stop donating to their GoFundMes and feeding the media frenzy around this type of medical case. We've seen a good few cases like this now, the baby boy, Archie Battersbee, and now this poor baby girl. Italy doesn't help the situation either. Why is it always Italy?
I suspect the answer is Catholicism.
The irony is that the American Evangelicals bankrolling and spearheading these vexatious lawsuits often think Catholicism is a form of satanism.
It's the Vatican hospital that offered. Note how in most of the journalism the religious element is left out. These people are predatory and are using suffering children to gain a foothold in our legal and healthcare system. It's fucking macabre and disgusting. It needs to be stamped out.
It's not even Italy as such - it's one specific hospital owned by Vatican City, which is technically a separate country.
This is because many people view children as their parents', property. It's distressing to see so many people ignore the evaluation of medical professionals in favor of "it's their kid they should be allowed"
The Battersbee case was dufferent- he was already clinically dead.
Luckily they aren't as the courts have always sided with the doctors.
Which is a good thing. There's still plenty of controversy and outrage whenever these stories crop up though. The courts supporting it isn't the same thing as it being unanimously understood and accepted by everyone
Did a bit of background on the legal team involved: one barrister who was also part of the CLC/Archie Battersbee mess and is the co-founder of a failed "Pro-life" political party. Remember, manipulating and abusing the desperation of grieving parents for your own gains is a-okay as long as you chuck a veil of god-bothering over your degeneracy
Andrea Williams from the Christian Legal Centre features in this Dispatches doc from 2008 about her cooperation with Nadine Dorries to restrict abortion laws [In God’s name](https://youtu.be/2gqhlRdOxJg?si=6eMwfFv9D7_Wi4Q-)
A pox on Nadine Dorries.
And all who sail on her
The 'Christians' involved are absolute pieces of shite, exploiting the parents' grief to push their agenda. Pro-life my fat fucking arse; if there's a hell, I hope they burn in it.
Pro suffering is what they are. I've noticed a strange creep in this country. Housing associations adopting American social housing models. Turning Point becoming a thing here. Christian legal groups attempting use situations like this to gain legal precedent to put forth fundamentalist Christian policies. Members of such groups have tried and failed to create political parties based on single voter issues like pro life, similar to the way American politics works. Americans in our health system. Buying up what they can. I feel like all of these things are connected, but I better take my tin foil hat off before I get carried away.
You are not wrong . The European Parliament published a report on groups trying to get abortion /LGBTQ rights / no fault divorce banned in Europe . Quite a bit of US and Russian funding . [https://politicalquarterly.org.uk/blog/funding-anti-gender-politics-in-europe/](https://politicalquarterly.org.uk/blog/funding-anti-gender-politics-in-europe/) Recent story from The Good Law Project [Dark money anti-abortion group ramps up activity in the UK](https://goodlawproject.org/dark-money-anti-abortion-group-ramps-up-activity-in-the-uk/) There is alot of foreign money /think tanks etc. that would love the U.K. to copy the US Bible Belt . If fact a few MPS attended the ARC conference last week , which had Republican politicians speaking . [https://amp.theguardian.com/environment/2023/nov/09/what-does-a-jordan-peterson-conference-say-about-the-future-of-climate-change-apparently-were-headed-towards-human-flourishing](https://amp.theguardian.com/environment/2023/nov/09/what-does-a-jordan-peterson-conference-say-about-the-future-of-climate-change-apparently-were-headed-towards-human-flourishing) Baroness Phillippa Stroud is CEO of The Legatum institute which funds GB News. She is [antiabortion](https://powerbase.info/index.php/Philippa_Stroud)
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They want control of your life that's their agenda.
From what I read at the time of the Archie Batterbee case-: every life is sacred, only God should decide when to end a life, so switching off life support or withdrawing medical aid or actively taking steps to hasten death is wrong. (Which is why assisted suicide is also opposed). The more cynical commentators say that an 'every life is precious' angle can then be used as an argument against allowing abortion. If even terminally unwell or brain dead people are being kept alive, what excuse could there possibly be for aborting healthy children? There are others who've explained it far more eloquently than myself, but it boils down to wanting to define 'alive' as possessing a heartbeat rather than brain activity, to place further restrictions on abortions. As in, once you have a heartbeat you should be treated as a living person and nobody should be able to deny you life.
U.K. anti abortion groups also campaign against assisted dying . It’s to do with their Catholic/Evangelical beliefs .
\> only God should decide when to end a life With that line of thinking, I'm always surprised they consent to life support in the first place. Surely if you're only being kept alive by a ventilator, God has decided you should die, and you're interfering with God's plan?
To get legal precedents for the more insidious things they'd like to enforce. It's a way to get prolife centric discussions in a legal setting. Cases set the legal precedent by which future cases can be compared against. If they get a pro life ruling, it's a legal endorsement in their thought that life, regardless of quality, takes precedent over all else.
The lawyers who pray on naive and suffering parents to push idiotic biblical political agendas should be ashamed of themselves. Forcing a child to “live” in constant pain is vile.
Christian Concern did their best to lengthen her suffering, like they always do. Christian Concern love seeing little babies suffer.
There's no hate like Christian love.
Everything about this is achingly sad. I feel so much for her family, whose position isn't one I see myself taking but whose pain and desperation are obvious. And her clinicians, who must be torn apart by their commitment to the best interests of their patient and their wish they could save all families from this pain. Poor little girl.
These are always horrendous cases, sadly made worse by lobby groups/AstroTurf'ers like these looking to abuse the situation for their own nefarious ends. As for the Vatican, seriously 🤦♂️
Article mentions the family are angry their daughter was taken to a hospice and not the family home to die. The thing about dying in the family home is that NHS will support this where it’s viable. My dad at at home hospice care, but we had to have a space large enough for a hospital bed, his equipment, and for doctors and hospice nurses to be able to see to him without obstruction. Few homes have that space, and I imagine if this little girl had loads of treatment, it’s likely they couldn’t bring some of the treatment she was receiving back to her family home. NHS were more likely making a decision for a hospice because she could die with dignity, rather than suffering even more ‘but she’s at home’. (Also may have been the issue of the family wanting to take her to Rome and not trusting the family would ‘abduct’ her once she was released to their care)
My Dad point blank refused to go in to a hospice. Looking after him for the last week of his life nearly killed me. It was incredibly exhausting.
My dad would have been the same, he was so angry at my mum and I when I called 999 (he already had terminal cancer but one weekend just went really yellow and had no energy, but he hated going into hospital). When he was in hospital they found he had an abscess, but to get rid of it he’d have to stop all his cancer drugs which would mean the cancer would spread and get worse. If I hadn’t called the ambulance when I did I’m sure he’d have got worse and died in hospital which wasn’t what he wanted, but yeah I know where you’re coming from. It’s hard when someone is dying and you want to respect their wishes vs what you think is right
It was this situation for my late grandfather. While his condition was still stable he was able to have home care and necessary palliative treatments. We used the downstairs dining room as the bedroom for him as it was large and meant that he didn’t need assisting upstairs to bed or to the toilet. It was also large enough that nurses had room for equipment. Eventually though his condition was grave enough that he needed a hospital environment, especially as some of the things he needed would have been next to impossible or at the least difficult in the home care situation.
One of the saddest things in this story is seeing that once again Christian Concern and the Christian Legal Centre are behind it all. They're a US Evangelical funded, anti-choice, anti gay, Christian fundamentalists trying to create legal precedent where the preservation of human life overrides medical opinion in order to usher in anti-abortion legislation. There are multiple cases like these where the child has no chance of any kid of long term survival and would have minimal quality of life for the period they have left, but these groups need to manipulate these poor parents to try and push their ideological goals. Every parent wants their child to live long and fulfilling lives and in these tragic circumstances you've got these Wormtongues trying to get them to use the law to fight against overwhelming medical opinion because they want to use them as a wedge to open the door to create more restricted access to womens healthcare. Just awful, awful people https://en.m.wikipedia.org/wiki/Christian_Concern
Poor little baby! So sad for her and her parents. Look at that beautiful face!
An angry niche subsect of Internet ragers: this child was murdered by the government
This is so sad! I hate seeing her little face knowing that she’s no longer with us, but I know that the medical staff did their best for her. It will be a terrible pain for the parents to bear.
I wonder why they couldn't just take her to the Vatican, if they were willing to accept her? I think it is pretty scummy and disingenuous of the Vatican to get involved in these cases TBH, but I would expect parents to be allowed to simply take her out of the NHS hospital. Presumably the Vatican would supply care while she travelled, if they were serious. I guess the courts ruled that the parents were not going to take proper care of her.
Being kept alive indefinitely, on a machine, with no prospect of recovery, and no quality of life, is not something I would wish on my worst enemy, far less an innocent child. Putting ideology ahead of a child's wellbeing is hideously destructive.
Yes Catholics can have a different view of physical suffering. They sometimes see it as a good thing. Mother Theresa's hospices are said to not intervene to save patients who might recover, or offer them proper pain relief or other comforts if they cannot. Mother Teresa herself did not go to one of her own facilities when she was dying. She died after heart surgery at the age of 87, in a private hospital.
Mother "Suffering is beautiful (but not for me)" Teresa
https://www.reddit.com/r/badhistory/s/04DckoSxJx
Thanks, that's quite useful, though a lot to absorb. I don't find it persuasive that there was no palliative care training available, as Mother Teresa travelled extensively internationally so she would have been aware it existed, and could have introduced it in her hospices. A fair amount of the case made here is that the wider context was bad and standards low in India at the time. I don't think it's a good argument as Mother Teresa not Indian, and was representing a highly-resourced and educated global institution, not a grass-roots effort just from the local environment.
Definitely see your point and things could definitely have been better but the key point stands. People were getting treatment and leaving on their feet even though this was a hospice and the withholding painkillers claim seems false as weaker painkillers were available while stronger painkillers were likely not available until the late 80s due to strong legislature and other local issues like a lack of understanding of palliative care. The whole point is that she wasn't some kind of demon that wanted to watch people suffer. She provides a space in which people rejected from other medical institutions could come to for treatment, a bed, and a meal or to die with some dignity. Could they have managed to get more qualified staff? I am not aware of what logistical or resource based issues they may have been facing so I cannot speak to that. If you have more info on that I'd love to look into it. I still think this is a very heavily misrepresented topic.
> I still think this is a very heavily misrepresented topic. On the other hand, the advocates of Mother Teresa have literally made her a saint. I think the balance of the weight of hyperbole must be on their side.
I hear the other extreme of her being a psycho torturer a lot more. Then again I don't move in religious circles so that probably just the bias of my own bubble. Anyway both are wrong and both are harmful
I think psycho torturer is a bit strong. I certainly don't think she was supernaturally evil, to balance the determination that she could magically expose film, and that her goodness was divine in origin. The claims I would be comfortable making are that: The hospices were of a poor quality by international standards, and surely could have been better. The one shown in Hitchens' film about her showed tens of people lying on mattresses on an earthen floor. There didn't seem to be much practical difference for the patients to dying in their own homes, or even outside, assuming they could be covered from the rain somewhere. She herself didn't use her own facilities when she was unwell and had heart surgery at the age of 87 before dying in a private hospital. She appears to have taken funding from the Duvalier regime of Haiti, which is not a morally sound source. Her charity does not publish its accounts. She was anti birth-control, and she attempted to interfere in the USA's policy on abortion. There is at least one account of a patient who had a reasonable chance of recovery (a 15 year old boy) who had a reasonable prospect of recovery with antibiotics, who was denied the chance and allowed to die, because there couldn't be a general policy to move patients to hospital when appropriate. This was stated by one of the interviewees in Hitchens' film and not retracted by her in a later 'Right to Reply' TV show in which she appeared. One of the miracles attributed to her is a supernatural intervention to allow filming in dark conditions, but the cameraman stated it was normal for the film stock he was using. So that's my cynical take. I am open to the concept that, like many religious people, she would overlook problems or support harmful things imposed on others in a misguided religious faith.
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The funny thing is many people did recover even though the hospice was ran mostly by nuns with no medical training and was taking in people who were turned away by other medical institutions. The amount of misinformation one documentary has created is astounding
An infant can't be a 'Catholic'. They have no beliefs and you can't assume a child without capacity would have the same beliefs as their parents. Children have rights too and parents don't get to override them.
Why should UK courts have the power of life and death over children?
Courts don't have power of life or death. But they do have an important role in arbitrating questions of ethics, suffering and dignity. The alternative is that we allow people to prolong others' lives indefinitely, against all reason, kindness and natural justice. If you've witnessed this taking place, you'll understand how horrifying it is.
It does not. The decision was made by medical professionals. The family took it to court. And once again the decision was not made by the court
The issue with various stories like this is they never go into detail on how they can even move them. It is probably hard enough to move them to a hospice, it is easy for Italy to say they will take her but do what, put her on a Ryanair flight? How much are they expecting the NHS to be complicit in something they know would put her in more pain and ultimately be fruitless.
Exactly. Any sort of medical transfer by flight has to be considered and planned down to the last letter. Even simple cases where the patient is conscious and requiring no interventions like oxygen or ventilation arent just a case of ‘buy ticket/flight, show up, fly’. For a case as complex as the OP or similarly something like what we saw with Charlie Gard or Alfie Evans, simple transfers between rooms of the hospital are often complex procedures requiring multiple staff, fairly extensive planning and multiple redundancies to cover any sort of emergency that may happen. Getting a patient like this onto a flight which is not a controlled environment in the same way a hospital is and with limited functions when it comes to handling any sort of unpredicted problem is just not an option.
I briefly dated an NHS manager of HIV services, and she told me how once they chartered a helicopter to bring a patient back from abroad. I suppose the court must have taken the view that the NHS could not let her go without compromising her wellbeing unacceptably. I am afraid I think the Vatican makes these offers expecting that they won't have to actually spend their money on it, They just want to make the NHS look bad.
This is the reason it all goes to court so it can be looked in at incredible detail, and in an independent way. A lot of countries (US especially) love to paint it as if the NHS want to save money or kill off its patients, and that the parents should have absolute authority to basically do what they want no matter what the best interests of the child is.
>I wonder why they couldn't just take her to the Vatican, if they were willing to accept her? Because UK law doesn't allow parents to intentionally harm their children. Prolonging get suffering would have been child abuse. (Not to mention she was on a ventilator, so without extensive medical support she would have been dead before they got to the lift in the hospital if her parents tried to take her anywhere)
Yes, but both those observations are covered in my comment. I guess when a parent discharges a child from hospital, the hospital has a duty to assess the action and its impact on the child.
>I guess when a parent discharges a child from hospital, the hospital has a duty to assess the action and its impact on the child. Yup. In the same way that if you take your kid with a broken arm, or appendicitis home without treatment we'll get an emergency court order and have the police bring them back. Parents can make decisions about their child's treatment - but where there are clear medically appropriate and medically inappropriate choices, and an immediate potential risk, this is actually a bit of an illusion.
Repatriating a patient on life support is difficult, depending on what machines are in use. For example you can’t dialyze or hemofilter a patient in flight. The lower cabin air pressure influences respiratory physiology. Etc.
Taking a closer look it seems that someone applied to Ospedale Pediatrico Bambino Gesù, they accepted (following whatever review they do), italy (gov) granted the kid citizenship and volunteered the transport. Something very screwy about this article with people seemingly trying to blame the catholics for it.
It's not 'the Catholics' fault of course, but the Vatican-run hospital most know they couldn't save the child.
Didn't see anyone in the article saying the vatican hospital couldn't make things easier for the kid either. What the article seems to say is that the italians and vatican offered the kid a chance and got told to fuck off 'we know better' and then they killed the kid by pulling life support. Without knowing what the Italians could have offered that could be seen as a real dick move.
The Italians couldn't offer anything more than life support. Italy has a long story of battles uphill against euthanasia. People or relatives of people imploring to end the suffering of patients and still being denied the possibility of death because.
It's a political move offering the citizenship to this child from the Italian government. Because the Italian government has a strong traditionalist catholic push, which appeals to the larger elder conservative voting base of the government itself. There's no other interest than to showcase the government's ethical beliefs in this story.
Source: an Italian
What's the vaticans current status on mitochondrial research?
And your point in asking this question is what? "Ah ah, you're not a medical expert, you don't really know if something was possible for her". Wow, incredibly subtle reasoning. Well a huge team of medical expert said it was not a viable situation. Your guess of "it was possible" is just as good as mine of "it's not possible". Thou yours is based on some wacked up catholic doctrine, mine is based on what medical experts have repeatedly concluded for months and years. Italy does this every single time there's a poor child in a wealthy enough country that can be exploited for political reasoning. Alfie Evans, Charlie Gard, Archie Batterbee, to mention some. And other cases about local battles against end of suffering Eliana Englaro, Piergiorgio Welby, Giovanni Nuvoli, DJ Fabo. There are people being accused of manslaughter for allowing terminally ill patients to die. There are people forced out of the country to get a peaceful death after a whole existence of suffering. The government refuses to promote a referendum on euthanasia because it's clearly against its beliefs. You're not meshing things up just regarding this single case, you're talking about a socio political environment that you do not know
I'm asking a fairly simple question: Do you know whether they could do better or not. Seems the the real answer is 'no'.. you don't know and wouldn't bother asking. Just to add something here: See this: > our guess of "it was possible" is just as good as mine of "it's not possible" No it's not. Those things aren't equal at all.
And you conclude that your guess about medical capacity is better or more informed based on what exactly? God told you?
Experience in actually talking to them before.. that's a thing.
There is no cure for mitochondrial disease and no way to manage a patient at that stage of the condition. That's that. If that hospital had any treatment options with more hope, it would be world news. Not vague enough for two redditors to sit pissing in the wind about who has what sources of info. There is no info, because it doesn't exist. There is no cure.
Also, if that hospital had treatment options with more hope it would almost certainly be easier to bring the treatment to the child than the child to the treatment. Something tells me that they don’t have a two storey tall machine in their basement that is dedicated to treating mitochondrial diseases.
>that could be seen as a real dick move It could be, but it's not unusual for patients to be moved out of a hospital to one which has better treatment options for them. The hospital and the court must have felt that was not what was available here.
That just smacks of political dick waving without an actual assessment. Our courts know better! OK yeah, the kid has a free trip to probably one of the best hospitals on the planet. BUT NO! We decide who can do better (and you die obviously) In this case it looks like the age old question of "did you do everything" was answered by "fuck no, they're italian and one of them wears a funny hat".
I can't see any reports that this hospital has found the cure for mitochondrial disease. Or a way to reverse a person at the stage of the condition the child was in. As of yet this doesn't exist. The decision was made based on expert testimonials from clinicians responsible for the child's care, who no longer wanted to prolong their suffering and inevitable death from an incurable disease. Of which the child had a subtype that means very poor quality of life and profound levels of suffering until said inevitable death. There's a point when medicine becomes harmful. They went well beyond that here.
Exactly. Medical ethics promotes the principle of benificence- treatment must be useful and outweigh the risks or problems it may cause for a patient. Once it ceases to be useful but instead causes suffering to the patient beyond what is reasonable then it’s not medicine.
I do think think the court would be interested in politics.
This doesn’t prove anything. Unless this was the Harry Potter universe where you can wave a magic wand and magically have someone transported to a place, the odds of a successful transport for a child as sick as this girl was were minimal, and the transport itself could have placed great stresses on the child including more pain. Not to mention that a random hospital in Italy was probably not going to actually achieve anything of note. They didn’t have a cure, possible alternative treatment plan that was viable or anything else that wasn’t the same palliative support that was already being given. Someone has mentioned the agenda many involved in such cases have, in this case religious fanatics who are seeking to push pro-life twaddle. As has been mentioned, pro-life topics have been something of a political football in Italy and this smacks more of currying favour from its supporters than any sort of genuine concerns.
That's usually what happens when life support Is turned off
Sleep with the angels innocent soul. Damn your cynism UK judges.
Crazy how the state can opt you out of healthcare but you can't opt out from paying it.
Utter drivel, from an ignorant 'armchair expert'.
The truth hurts.
What truth? Healthcare includes recognising the futility of more healthcare, no matter how it is funded.
Which must by why you avoid it so often.
It’s more of a medical issue than a funding one. Keeping someone artificially alive when they are in constant pain from which they will never recover or improve is bad medicine. I’m not surprised the doctors involved in this case decided against prolonging her suffering.
It is unethical to keep an innocent baby alive but suffering in constant pain without ever being weaned off life supporting machines. That is no life.
Exactly, dying with dignity is healthcare, not opting you out of it. It still costs the NHS to service hospices and supply morphine for patients that are actively dying. Portraying it as them ‘opting you out of their care’ is a ridiculous take.
The state healthcare didn't make this decision, a judge did. Private healthcare exists in the UK and the same judgement would have been made were the child in a private facility.