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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Would you end your childs life?

102 replies

muckypup73 · 03/07/2017 09:12

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Nancy died 14 days later at London’s Great Ormond Street with her family around her after fluids were withdrawn.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

OP posts:
SuperBeagle · 03/07/2017 11:37

My godmother passed away over the weekend. She was diagnosed with terminal lung cancer 12 months ago, but she ended up getting pneumonia. We saw her less than 12 hours after she was admitted, and she was already unconscious, with a constant, automatic dose of morphine. We were told she had "hours to days" to live and there was nothing more that could be done. As her husband said, even if the pneumonia could be treated, we would only be delaying the inevitable.

Lonelymummyof1 · 03/07/2017 11:39

Quirky that is what my DD has complete instestinal failure. She is on TPN though not milk feeds

Puzzledandpissedoff · 03/07/2017 11:59

It would break my heart but yes, I'd have asked the same in that mother's position

I don't pretend any medical knowledge, but in case it helps anyone I've had two relatives where fluids were withdrawn at the end, and the staff explained that this isn't the horror it might seem to a healthy person. Apparently dehydration changes the body chemistry and creates a painkilling / drowsy effect which I was told eases the dying process

muckypup73 · 03/07/2017 12:03

SuperBeagle, sorry for your loss xx

OP posts:
UnbornMortificado · 03/07/2017 16:59

I don't think I'm a "better" parent for withdrawing. I lost a day old baby not an older child. I hope to never know how that feels or what I'd do.

But I'm sick of the GOSH staff being vilified, if they are cold blooded "murderers" then so am I. Its upsetting.

rinabean · 03/07/2017 17:19

Like many other people on this thread, I think it's appalling that we don't have real euthanasia. It could be subject to exactly these same rules. If the judge would rule that fluids could be removed today, then in the future when we have this law they could actually be euthanised.

Having to decide that your child should die is bad enough, but having to choose between potentially years of torture in hospital vs a few days of torture in hospital is surely salting the wound!

I don't know if I could do it. I don't have kids yet, but the thought of having to choose to put my pets down is bad enough. But at least that would be quick and painless at the point where I did choose it. If you remove breathing support of a person, or if you have an animal injected, it can happen quite quickly and you can hold them. You can feel that you were there for them.

Normally when we are talking about not being fed and watered properly in hospital we're talking about neglect, and saying that relatives should be there to advocate for the patient. But in these cases, the relative is put into the position of watching them starve to death without a drink of water. It's not right. I can't blame the medics, they are abiding by the law and I understand that. But the law is wrong!

AHedgehogCanNeverBeBuggered · 03/07/2017 17:20

What pisses me off is the in the UK pregnant women aren't routinely screened for Strep B as they are in the vast majority of developed countries. Apparently it's too expensive and "most babies will be fine" - but what about the ones who aren't?? I'm paying for private screening at £40, I'm lucky we can afford it with no trouble but there are many people out there who can't pay and babies die or are left severely disabled due to Strep B every year Sad

sashh · 03/07/2017 17:32

But its ok to withdraw fluids and nutrition from a child and allow them to die in pain?

Withdrawing nutrition does not mean withdrawing analgesics.

BanjoStarz · 03/07/2017 18:00

im not sure the current system needs changing at all. Based on medical advice it seems withdrawal of care is not exactly shutting the door on a person and waiting for them to die of dehydration - it's carefully managed.

I don't want euthanasia to be a thing in society, I don't trust the rest of the population enough, where is the line drawn? who decides what level of quality of life is "good enough" to survive and what level means death?!

In reference to Charlie's case - I understand completely why his parents fought as hard as they did, the decision to withdraw care cannot just be the medical decision, the family and the courts have to be involved - so as far as possible the right checks and balances are in place to make sure the decision to withdraw is the only humane one.

And for all those who are pointing out we euthanise pets when they're old and ill, we euthanise them when they're not as well...once the technology and acceptance is there it's a slippery slope.

So no, on reflection I don't believe in the right to die, because those few who gain are hugely outnumbered by the vulnerable people who may be taken advantage of with no one to advocate for them.

KittyandTeal · 03/07/2017 18:04

We chose a tfmr when our daughter was diagnosed with trisomy 18. One of the main reasons we chose a termination was that we knew at some point we'd have to make the decision to withdraw her care and let her die. I just couldn't face that. It might have been a cowardly decision but I live everyday knowing I never got to meet my daughter. However, I am glad that, through pre natal testing, we got to make the choice. There are many, for meany reasons that don't get the 'luxury'of our decision.

There is no right or wrong answer in these situations, and definitely no winners. Being faced with letting your child die or encouraging/quickening (I'm not sure the right word, kill isn't right but strictly speaking it's what we did with our daughter) the process is the worst decision you could ever have to make. Heartbreaking

LuxCoDespondent · 03/07/2017 18:16

Definitely if the child were suffering and there was little or no chance of recovery. Love means doing the best you can for another person. Keeping a desperately ill child alive, in constant pain, with no chance of recovery, does not show love for the child. It shows the parents are selfish in the extreme.

SkintAsASkintThing · 03/07/2017 18:21

By the withdrawel of fluids ?? No, fucking way.

By other means (( removal of ventilation, swiss clinic type thing, yes )) lets face it, if someone decided to stop feeding and watering their dog for a few weeks instead of getting it put to sleep they'd be jailed. Why the hell are we doing this to humans ?? Even people on death row get better than that.

badgercat · 03/07/2017 18:34

We made the same decision as KittyandTeal, I'm incredibly grateful we had the option, as much grief as we felt and still feel it would have been made so much harder after her birth.

muckypup73 · 03/07/2017 18:58

KittyandTeal, I admire your decision, I always said if I ever had a child with a severe severe disability I would not bring it into this world as they do not live long xx

OP posts:
sashh · 03/07/2017 18:59

By the withdrawel of fluids ?? No, fucking way.

This is not done when someone is conscious .

SkintAsASkintThing · 03/07/2017 19:42

Sashh.......10 years ago my mum was placed on the liverpool care pathway. She flitted in and out of consciousness for almost two weeks and whilst she couldnt speak would moan. Up until the day before she died she would desperately suck on the moist sponge we put into her mouth. If the drugs had been removed i've no doubt she'd have been fully conscious.

It's only now with the benefit of being an adult (( we were barely more than kids ourselves )) I can see how.wrong it all was, no dignity there at all.

SuperBeagle · 03/07/2017 19:45

the family and the courts have to be involved

The courts definitely do not have to be involved.

bridgetreilly · 03/07/2017 20:02

Yes. If it were in the child's best interests. Because that is ALL that matters in these situations.

user1498726699 · 03/07/2017 20:29

We had to decide whether to have a resuscitation team on standby at DD2's birth or let her go in peace. We only found out 2 weeks before that she had a lethal condition and would have been on a ventilator from birth, in severe pain and would be lucky to live for 6 months if that.

It completely goes against parental instincts which is the survival of our offspring at all costs of course. We had to balance that with our instincts not wanting our tiny baby to feel pain. I still question that decision now many years later and probably always will. I have the utmost sympathy for Charlie's parents and hope they take comfort from knowing they did absolutely ALL they could for him. In a way I think it's a blessing it has been taken out of their hands. It's a decision I would not wish on anyone.

EC22 · 03/07/2017 20:40

Yes but i think they should be euthanised. Withdrawing care is a long process, Id rather it was quick and painless.

DailyMailReadersAreThick · 03/07/2017 20:43

I watched a close family member die from "withdrawal of fluids". I slept by her side in the hospital for a week until she passed. She appeared to be unconscious and showed no signs of suffering, but the thought that she might have spent that week with maddening thirst haunts me. I remember a nurse telling me that my relative could well be conscious and could hear me, despite appearances. I have to tell myself the nurse said that to comfort me, and it wasn't true.

It's an appalling way to die. The laws need changing so the hospitals can do the humane thing.

FinallyThroughTheRoof · 03/07/2017 20:45

I cant say as am not in that position.

Noone can know what they would do. And noone should.

FinallyThroughTheRoof · 03/07/2017 20:46

Its a personal decision.

Owllady · 03/07/2017 20:54

I just feel sad every time I see the parents :( their heartbreak is clear to see. I completely understand why they wanted to explore more avenues. Degenerative diseases in children are devastating. I've had a friend lose a child to the same condition and another lost a child with battens. My friend has a child with MD.
I would never judge any of them, ever.
Most of you would thank the stars in the sky that it wasn't you and your child.
Please don't judge them. They just love him.

justgivemeamo · 03/07/2017 21:03

I think as a society we need to rapidly re think our attitude to death.

I cant get my head around anyone wanting to watch a loved one in un ending in curable pain....

I have had my own close relative saying " I want to end this I want to go" and being forced to go on in agony for two more weeks.

I guess we have to ask ourselves..if we were in that pain and could not communicate or were too young, what would you like your relatives like to do for you?

I know personally I am awful with pain, I would want them to end my life and I would also like the chose over my own life and I would like to be able to say now - various degrees of dementia, life quality where I could say - end it for me. We dont put animals through what we put humans through in the UK.

The legislation is actually all there, and other countries are creeping towards it, we need to get there urgently.