Would you end your childs life?

[muckypup73]

After the case of little Charlie, I came across a facebook post about little Nancy, anyway I will take off the newspaper what it says.

www.mirror.co.uk/news/real-life-stories/begged-judge-end-sick-daughters-4509235.amp

Nancy was born blind with hydrocephalus, meningitis and septicaemia. It meant she could not walk, talk, eat or drink and spent hours screaming in agony

They must have been the hardest words any mother could ever have to imagine about her child.

But devoted Charlotte Fitzmaurice bravely wrote them down and handed them to a High Court judge to win for 12-year-old daughter Nancy what she believed she needed most.

To put an end to her suffering – and finally to be at peace.

Nancy was born blind with hydrocephalus, meningitis and septicaemia. It meant she could not walk, talk, eat or drink.

Her quality of life was so poor she needed 24-hour hospital care and was fed, watered and medicated by tube.

As her health deteriorated, she spent hours screaming in agony despite the morphine and ketamine she was given.

For Charlotte too, the pain of seeing her daughter suffering like this was too much to bear.

So after 12 heartbreaking years, she went to court to fight for Nancy’s right to die.

Her moving 324-word statement was read out by Justice Eleanor King in August.

Giving the reasons why Nancy should be allowed to die, Charlotte said: “My daughter is no longer my daughter, she is now merely just a shell.

“The light from her eyes is now gone and is replaced with fear and a longing to be at peace.

“Today I am appealing to you for Nancy as I truly believe she has endured enough. For me to say that breaks my heart.

“But I have to say it.”

In a landmark decision, Justice King immediately granted Charlotte’s request.

Nancy died 14 days later at London’s Great Ormond Street with her family around her after fluids were withdrawn.

The ruling sets a precedent. It is the first time a child breathing on her own, not on life support and not suffering a terminal illness has been allowed to die.

The judge’s decision was fully supported by doctors at the world famous children’s hospital – but it is bound to reignite the “right to die” debate.

And it will be further fuelled by what Nancy’s parents’ have to say today.

Charlotte, 36, had the support of Nancy’s dad, company boss David Wise, 47.

And the pair agreed to share details of Nancy’s case because they believe parents facing the same life-or-death decision should be able to make it without going to court.

They think parents should decide with medics at hospital rather then pleading in front of a judge.

It is a controversial stance. Nancy’s case comes five years after the High Court approved the death of baby Ronnie Bickell. He was born with a genetic ­condition that rendered his muscles useless.

A year later Hannah Jones made ­headlines in a High Court story that took a remarkable twist – and bolstered the case against the right to die.

At 13, she refused a life-saving heart operation. Herefordshire Primary Care Trust applied to the High Court to force the op but dropped the case after she convinced them she did not want surgery.

The next year Hannah, of Marden, decided to have the operation. The transplant was successful and she made a full recovery.

Charlotte, 36, never had such hopes of a happy ending for Nancy. She was told her baby was likely to be born severely ill two days before she gave birth in July 2002.

Charlotte was carrying Group B Streptococcus. It had gone untreated during her pregnancy.

She says: “Hearing my little girl’s ­condition could have been treatable in the womb was unbearable. If caught early, simple antibiotics can treat it.

“Instead Nancy was born blind with meningitis and septicaemia. It was utterly devastating. But I knew I would love her no matter what.”

At 10 days old, Nancy had to have a shunt fitted in her brain. She spent a month in hospital but was finally allowed to go home. Doctors warned she was likely to die before her fourth birthday.

Ronnie was on a ventilator and could not communicate but could hear, feel and see.

After months of round-the-clock care the hospital applied to turn off his life support, leaving his mum and dad on opposite sides of a bitter court battle.

In November 2009 a High Court judge ruled with his mother Kelly that Ronnie’s quality of life would not be good enough to justify the medical care. Ronnie was 13 months old when his life support machine was switched off.

There is more if you want to read it, but if you had a child that had utterly no quality of life what would you do?

Lonely that is what frustrates me.
People are making their judgments based on really, really crap information.

Apologies if slightly graphic & off original topic.

I think people on see ventilatord as machinery that keeps children alive but its just not true.
There is many things that can be withdrawn.
My daughter is kept alive and only alive because of 16 hour iv pumps.
In this situation it would be those they withdraw.
Which is fluids and nutrition

Withdrawing fluids/dehydration often sounds much worse than it is.

Yes if you had someone who was concious or well they would suffer and die without fluids.

But if someone is dying and decision made to withdraw interventions keeping them alive, and they are dehydrated also, IME you treat the symptoms. So if there is pain you increase painkillers, aggitation - give medication to settle this, dry lips - apply mouthcare, dry skin apply creams and put into comfortable positions.

You can still have a good death this way.

The answer to the original questions it has come across my mind many times.
My dd although poorly and spends alot of time stuck in hospital.
Has got some quality of life, walk , talks, smiles, plays etc
If at any point she could not do anythijg for her self I think I would let her go.

lonely

That of course is completely different. Any quality of life and this question would simply not arise.

If it is such a kind way to go why do we continue to hydrate at EOL if its not prolonging life but remove if it is?

mummy tpn is one of the things that keeps your little one alive surely a and TPN is pretty invasive and problematic compared to NG or peg feeding.

I don't think I would want my EOL child subjected to TPN with all that entails but that isn't the same as simple fluids is it?

I would support a parent in their choice because these decisions are never taken lightly.
My point is that we are not privy to the full details of any of these cases even though some people seem to think they are.
The tabloids are the very worst places to get insight into these events.
I really dislike parents being held up against other parents as examples of how 'to do it right'.

As has been said several times already, you don't know until you are faced with this.

And some of us have lived it.

I agree with Rideon about withdrawing fluids. In any case, it was probably the only option available as British law does not allow active euthanasia.
I completely support this mother's decision, and hope I would have the courage to do the same thing were I in the same position.
Why the fuck are human beings (especially children) made to suffer needlessly when we are kind enough to end the suffering of our pets, I will never know.

It depends it is not clear whether she was iv fluid dependant.
Not far off the dependancy on TPN would still require central lines.

TPN it self on a day to day basis does not entail much difference to say being a pump feed via peg.

Long term difference 100 percent.
Liver/ sepsis risks / clotting etc

On a day to say basis though DD is not living life any differently at this moment as in today as she would if she was on a feeding pump for 16 hours.

Hope that makes sense.

However look at the 2.

DD age 3 - on full tpn , cardiac disease , lung disease 4 bout of serious sepsis.
Life support 4 times, mutiple trips to theatre.
However her day to day life consists of playing, going to ballet , parks.
Talking, walking, seeing, hearing, having fun with friends.
From for 8 hours a day you would have no idea there was anything remotely wrong with her.

Girl in post may not be "ill" iv , vent , or anything dependant.
But could not do any normal life things.

Hope that makes sense

That is what I am trying to understand.
A child with severe and complex needs is being kept alive by far more than fluids.
They are extremely vulnerable to chest infections for example.
A lot of them are on preventative antibiotics throughout the winter and a whole host of other medications.
If they are not then by definition they would not be medically complex.
So why the fluids?
A genuine question. I am sincerely interested.
Elderly people are often allowed to 'slip away' when they contract 'the old man's friend' whereas there has been a lot of controversy wrt to withdrawing fluids etc.

There is a distinction to be made between a person who is in the end stages of a disease and will not live more than a few days due to the disease process and a person who may linger for weeks without support.

Yes. I have agreed to withdrawal of care for my own child. I believed it was best for her and it was what the doctors advised.

I think thats where i am seeing it from to i think alot off people are not seperating the to

This was not a end of life situation as in she would not have died otherwise.
A child on full life support never going to come off is not in theory " ending their life " the same as ending this girls life in which she was not terminal and breathing un assisted so this does not full in to the same catergory as charlie gard.

However if we look at it that way the only difference between the 2 in life would be one would have a trachey and one would not.

Thats what would set them apart.
Both physically still can not do anything in life for them self.

2, not to.
Sorry been up all night haha

I think also not treating a chest infection as a way to end their life is probably just as unpleasant as stopping fluids.
They would feel really poorly where as you can be made to feel comfortable without fluids.
Alot of people in terminal stages have fluids withdrawn :(

It has to be the absolute worst decision any parent ever has to make, but I would hope that in the face of never ending suffering, then yes, I would make the choice for them to be at peace.

My Grandmother had fluids withdrawn when we were told that chemo was having no effect on her cancer any more and she was going to have a long drawn out death, over a period of a few months was looking likely. She was sedated and given morphine, and did not suffer through withdrawal of fluids. She passed away three days later. It was absolutely the right decision.

lonely they do but only at the very end.
A chest infection can be quite gentle as morphine can be given as a pain killer but will also hasten death.

I don't know because I am not a medical palliative specialist.
I would want to talk to a few to get a proper idea.
I wouldn't wipe up dog sick with any article about this in a tabloid.

I think pneumonia for example is often a cause of death but infections & antibiotics for instance generally are not the same as something long term that keeps someone alive. They are prophylactic, and generally an untreated infection is not an ideal way to die as there are many associated symptoms, whereas if someone can have their pain controlled properly and die peacefully presumably that would be an ideal.

There are lots of legal cases and articles on 'withdrawal of ANH' i.e. Artificial nutrition and hydration, which would include TPN, if you wanted to read further.

I refused invasive aggressive treatment of my daughter who was extremely unwell at birth.

I would do the same again and I would withdraw treatment from my surviving children if there was no chance of a meaningful recovery.

Artificial ventilation with zero brain activity is just existing, not living.

Mymother and father had a choice to make, he had a burst hiatus hearnia, he has severe cerebal palsy, pretty much vegetive, anyway they were pumping blood into him and as fast as they were pumping the blood in it was comming out again, mum and dad were asked if they wanted to carry on pumping blood or just let him die, he was going to die anyway, one said yes the other said no, they ended up letting him bleed out. but he haddnt half suffered most of his life.

Disclaimer, the above is just initial opinion and I know in many cases itis not appropriate to treat an infection. But I think that is more typical in elderly patients at the end of life. I would also want to know more about it before actually forming a judgement.

We (me, my mum and my uncle) made the decision to switch off my dads life support machine in January. He had had a sudden and unexpected cardiac arrest at 53. It seemed like the right thing to do, he was not conscious, fitting,'unable to communicate or even open his eyes or have any purposeful movement. He hated hospitals in life and the thought of him being in hospital having that level of intervention (ventilator, catheter etc etc) indefinitely was not a choice I think he would have made without a decent chance of recovery.

The mum who withdrew fluids from her daughter Nancy did so because she had intestinal failure. The very act of giving food/fluid through her feeding tube was causing agnony.

Yes. But i wouldnt phrase it like that. Its 'allowing your child the right to die'
I certainly would if they were older and were asking me to. I can see it would be more difficult if they are too young to express themselves. I think i would listen to medical advice over the extent of their suffering.
Its an awful thing to have to go through and i have every sympathy to any parents who have gone through that, however they have reacted. I can understand why they would try tirelessly to prolong their childs life even though i would not do that myself.

I personally support euthanasia being legalised and i really hope it is before i get old. I certainly would not want my life to drag out in pain and indignity.

Absoutely

It's bad when our pets get better euthanasia than people

If a pet is incredibly poorly, the vet puts it to sleep and it drifts off in no more pain

If my child had something that was causing them extreme pain and it wasn't treatable, why would I want them to suffer every single day

It comes down to quality of life. As soon as life is no longer of good quality, we should be able to have the right to pass peacefully