Parents Win Battle For Baby's Life

[Grahameeboy]

Something close to my heart as my Daughter has this disorder......just wanted to share it.
Feel free to say what you think. I will not be offended if you have a different view....I know it it was my Son I would be happy as he does have quality of life and is not in a Coma and I feel for the parents.

The parents of an 18-month-old boy with a terminal muscle-wasting disease won a legal battle to stop doctors turning off the ventilator keeping him alive.

Doctors had argued that the boy, who suffers from severe spinal muscular atrophy, had an "intolerable" life. He cannot breathe for himself, has to be fed through a tube, and can only move his eyebrows, feet, and fingers very slightly.

But his parents said the boy, from the north of England, who can be identified only as MB for legal reasons, could still enjoy the company of his family and was not mentally impaired.

At the High Court in London, Justice James Holman described the life of the boy - who is expected to die within a year - as "helpless and sad" but he rejected the doctors' request to turn off the ventilator.

"I am not persuaded that it is currently in the best interests of M to discontinue ventilation, with the inevitable result that he would immediately die," he said.

"He continues to see and hear and feel touch and to have awareness of his surroundings and in particular of the people who are close to him - his family - and to have the normal thought process of a small child of 18 months," said the judge.

"I ... consider that currently it is positively in his best interests to continue with continuous pressure ventilation and with the nursing and medical care that properly go with it."

The case was believed to be the first in which doctors had asked to allow a patient who is not in a persistent vegative state to die.

Although siding with the boy's parents on the main issue in the case, the judge also said he could not endorse other medical treatment which could inflict additional pain on the baby.

"If that point is reached, it would be in his best interests then to withhold those procedures even though he would probably die," he said.

[Colapop]

Can't say I'd pick either course of action until I was put in that position.

[Grahameeboy]

Can't say I'd pick either course of action until I was put in that position.

Yep it is a very emotional thing eh................I am lucky as Nats may live to 20 so I can get on with life and enjoy....she can sit, has a powered wheelchair to whizz around in and can certainly talk the walk......no complaints as you have to make the most and with these parents the repeat chances are 1 in 4.....

[GIXser]

Yep it is a very emotional thing eh................I am lucky as Nats may live to 20 so I can get on with life and enjoy....she can sit, has a powered wheelchair to whizz around in and can certainly talk the walk......no complaints as you have to make the most and with these parents the repeat chances are 1 in 4.....

Mate i rate you""" my heart goes out to people like you" and i mean that"
as individuals we stress about money daily and other material things" this is only brought back into perspective" when someone you know or very close to you is affected by their health" this in turn makes all the material things meaningless and "unworthy" and as of late i have come to realize this in a big way" i realize how lucky most of us are--
i admire you because you have the strenght to carry on with normal life" (i guess you can only make two choices!!!)even in your predicament-
i know i would step in front of a bus today, if i would be put into a position in order for someone close to me to have a happy healthy life--especially my kids and wife
but i guess we dont have that choice
( now i know you are not after a sympathy vote of any sort,) but i thought i would speak my mind)
take care and good luck:clap:

[Grahameeboy]

Mate i rate you""" my heart goes out to people like you" and i mean that"
as individuals we stress about money daily and other material things" this is only brought back into perspective" when someone you know or very close to you is affected by their health" this in turn makes all the material things meaningless and "unworthy" and as of late i have come to realize this in a big way" i realize how lucky most of us are--
i admire you because you have the strenght to carry on with normal life" (i guess you can only make two choices!!!)even in your predicament-
i know i would step in front of a bus today, if i would be put into a position in order for someone close to me to have a happy healthy life--especially my kids and wife
but i guess we dont have that choice
( now i know you are not after a sympathy vote of any sort,) but i thought i would speak my mind)
take care and good luck:clap:

Nah I am not a hero cause there is only once choice for me......my Wife sadly decided there were 2 choices......and don't walk in front of a bus mate...it's messy and your Wife and Kids would not be happy and that is what is more important mate.....when I see Nats driving her wheelchair I am proud mate and she can do better doughnuts than Loose Bruce....happiness is a great healer and yes I do have pain inside me but it stays inside cause self pity ain't cool man and Nats don't need it.

Ride safe mate and enjoy life.

[erik]

If the baby is in considerable discomfort, I'd agree with the doctors.

[enigma51]

diffuclt choice and cant realy comment so would leave it at that!

[Grahameeboy]

diffuclt choice and cant realy comment so would leave it at that!

That is the right answer Mr E........

[Grahameeboy]

If the baby is in considerable discomfort, I'd agree with the doctors.

Me to but this boy would not be in any discomfort...just that weak chest wall = hard to breath....it is an odd disorder...only affects voluntary muscles so heart is okay and no mental issue....my Daughter is very bright......

[Fishy]

my Daughter is very bright......

She get that from you mate? does she also have that cheeky wit of yours? Good on ya GB your a top bloke!. :niceone:

[sels1]

Nah I am not a hero cause there is only once choice for me.......

"Good on yer, mate" (in the best Southern drawl...)

Actually, I think you are a hero.

[Grahameeboy]

She get that from you mate? does she also have that cheeky wit of yours? Good on ya GB your a top bloke!. :niceone:

I would say she gets intelligence from both of us.....I just hide mine, she has empathy like me and she certainly gets the cheek from me and often all I can do is laugh so I guess she gets the better of me sometimes.....she is only 3.....geeze what will she be like when she is 5..

You top bloke too for a 'onda rider......see ya Sunday, I will call after Church...

[Grahameeboy]

"
Actually, I think you are a hero.

No no you are wrong.....I may have to red rep you for that abuse......:lol:

[ManDownUnder]

A tough one man.

Up front, and pushing aside all the wind up I've previously given you ... Jess mate. That's rough. I don't pretend to know what you're going through and I admire your position on it. How old is your girl?

Re the doctors vs the family having the decision on ongoing or withdrawal of treatment. My vote goes with the family having the "predominant say", unless their requests are absurd... and therein lies the problem.

Who qualifies them as absurd - the State? Unfortunately when it comes to guidlines of life and death - yes... it probably is the state. Decision by committee....

I don't know what else to say. I ain't been there, and I feel grossly inadequate trying to even get my head around the situation.
MDU

[Grahameeboy]

A tough one man.

Up front, and pushing aside all the wind up I've previously given you ... Jess mate. That's rough. I don't pretend to know what you're going through and I admire your position on it. How old is your girl?

Re the doctors vs the family having the decision on ongoing or withdrawal of treatment. My vote goes with the family having the "predominant say", unless their requests are absurd... and therein lies the problem.

Who qualifies them as absurd - the State? Unfortunately when it comes to guidlines of life and death - yes... it probably is the state. Decision by committee....

I don't know what else to say. I ain't been there, and I feel grossly inadequate trying to even get my head around the situation.
MDU

aha....no worries with the wind up mate...it is all good..don't stop on my account..

Nats was 3 in January........to be honest I have always been a positive soul and yeh there is pain if I really think about it, the odd lumpy throat but normally when she does something that makes me proud...just like all Dads........self pity ain't gonna help Nats as she needs me and I want her and I would not want to turn back the clock cause Nats is the way she is because of how she is......she has started asking walking questions and I just tell her that she cannot walk but she can talk and she seems fine...I tell ya what she puts things in perspective and wel I love her to bits and will enjoy an extra closeness with her.........

[DemonWolf]

Very hard choice.. one I hope to never be forced to make. As many have already mentioned, I dont think anyone would know until the situation happened to them. Some people can cope and some can't.. I dont put any blame or moral obligation onto anyone for making a choice they've made. Sometimes the brain just can't get past certain hurdles... though generally love conques and we make the best out of the situation.

/erm think I lost what I was saying.. and I'll stop rambling now

[ManDownUnder]

aha....no worries with the wind up mate...it is all good..don't stop on my account..

I hear ya, although it's hard not to see things in a different light following this.

I have a couple of blood relatives born with a variety of moderate disabilities, and I simply look at their parents and stand in awe.



Nats was 3 in January........to be honest I have always been a positive soul and yeh there is pain if I really think about it, the odd lumpy throat but normally when she does something that makes me proud...just like all Dads........self pity ain't gonna help Nats as she needs me and I want her and I would not want to turn back the clock cause Nats is the way she is because of how she is......she has started asking walking questions and I just tell her that she cannot walk but she can talk and she seems fine...I tell ya what she puts things in perspective and wel I love her to bits and will enjoy an extra closeness with her.........

Nothing but cred from me mate. I'm the Dad of 3 - 6 years, 3 1/2 years (going on 16) and 2 months. I can't help but relate.

The lump in the throat is good, but your attitude rocks. :niceone:

'nuff said - I've said my peace and I don't want to turn this into a pity or admiration session... I suspect you don't either.

[Al]

Kudos to you Grahameeboy
Special children are given to special parent/s to look after and nuture!

Al

[Grahameeboy]

Kudos to you Grahameeboy
Special children are given to special parent/s to look after and nuture!

Al

Very True Al........had the same thought myself.......

[Grahameeboy]

I hear ya, although it's hard not to see things in a different light following this.



Hey if you change cause of this I will red rep ya.........Spank Me where are ya.......

[ManDownUnder]

Hey if you change cause of this I will red rep ya.........Spank Me where are ya.......

righto - get fucked
MDU

[Grahameeboy]

righto - get fucked
MDU

:niceone: :finger: .......joy back to normal.....

[Scorpygirl]

Hi GB

I always stand in awe of parents and kids who have to deal with major health issues, especially as I volunteer at Radio Lollipop at Starship. The one thing that is neat about being a Radio Lollipop volunteer is to be able to bring a smile to a child's face after they have had to go through medical procedures all day. Radio Lollipop is there to give them some normality to the day and there is nothing better than laughing, joking and playing games. You sometimes are having so much fun together that you forget they have tubes, ventilators, wheelchairs, no hair cause of cancer etc. They are kids first and foremost. It's cool!! :banana:

Take care matey. :grouphug:

[kro]

I couldn't honestly say what I would do in that situation. Bit of a toughy. I know I would move heaven and earth for my children though.

Interesting article though Grahamboy, it challenges ones opinions.

[Winston001]

Does the little boy have motor neuron disease? And if I may ask, is that Natalie's situation too?

I've known a few adults with this, including two of my cousins and I'm speechless with admiration for the families who support them day after day.

Can I guess Graham that your wife couldn't cope? Thats understandable but all power to you for your strength.

[Biff]

What a question to answer.

I typed my original answer/opinion/justifaction here, then I deleted it because I realised that while I have a 1000 foot view, I really don't feel qualified to post something on this matter.

And there was me trying to decide what I should eat for tea.

I'll stick to the easy questions please.

Pasta.