Withdrawing
treatment and letting a child die if it is HIS will is not the same as
killing the child. If the child is able to live they will despite the
withdrawal of treatment.
As a nurse in NICU I see this often, sometimes it is kinder to let
the child go with some dignity rather than to go on and on. The child
suffers all the pain and indignities associated with ventilation etc and
often becomes swollen and unrecognisable. These parents need some
really good, empathetic support and guidance and probably time to make
the decision.
- Lynne, London, England, 2/7/2008 5:33
This
poor child. Is lying in that hospital bed day in day out really a life?
I cannot understand people who always accuse doctors and nurses of
'playing god'. Every time a doctor treats a patient, for whatever
condition, he is playing God. If people genuinely want to leave things
to Gods will, then they should never go to hospital in the first place,
they should just let nature take it course, whatever that course may be.
- JW, UK, 2/7/2008 5:24
I
feel for the parents. It is easy for us all to say fight for her or let
her go, you are being selfish, but there are not many of you who have
had to sit there and watch your flesh and blood suffer, but at the same
time show such want for life, and you can see that, even if they can't
express it physically with movement, her eyes must sparkle.
Once they make that decision they then have to live with it for the
rest of their lives. They have to sit there day after day knowing that
in part, they made a decision not to give Amber any more life, and they
have to live with the fact that in part, they also bestowed this on her
by carrying the gene in the first place.
I can't even begin the imagine the hurt and pain those poor people
are going through. None of you have a right to say they are selfish.
They are being anything but selfish.
- Angela, Leicestershire, 2/7/2008 5:17
"Mr and Mrs Hartland said Amber has only needed additional hospital treatment five times in four years."
There is no one on this earth more aware of Amber's quality of life
than her parents. I have absolutely no doubt her parents would think
differently for Amber if they felt their daughter was constantly
suffering and in pain. She is a beautiful child who likely has a
wonderful life with her loving family. Born with a chance of living four
years, what she has achieved! Her life has purpose!
I'm still young and I've survived cancer twice and a transplant. I
have, at times, been overwhelmed by pain and felt like dying would be
better however, in those unbearable times, I've wanted nothing more than
to live. I'm now the mother of a delightful two year eight month old
daughter.
'If we cannot find an intensive care unit in this country that will
take her, yes she will die. She will choke to death,' Mrs Hartland said.
How could anyone allow that to happen?
- Shelli K, Enid, OKlahoma USA, 2/7/2008 5:01
As
Elvis Presley used to say, "Don't judge that man 'til you have walked
in his shoes". Surely the parents have the last say about the life of
their own daughter? None of us know what we would do until faced with
similar circumstances. There is no doubting the love they have for their
child and how precious she is to them. People are too quick to sit in
judgement nowadays - have some empathy and understanding and be grateful
you are not having to make such a difficult decision.
- Michelle, Co Down, 2/7/2008 4:53
I
do not believe this is just about saving £2,500 a month - I truly
believe this is the doctors actually knowing more about it than the
parents do, and can see that there is no quality of life any more for
this poor little poppet. Maybe even the doctors feel very guilty about
keeping her alive - she can coo - what good is lying there cooing? A
pigeon can coo but if it broke its wings you'd put it to sleep.
- Anna, New Zealand, 2/7/2008 4:25
I
feel for these parents so much. My son was diagnosed with a
degenerative terminal illness in 1999. He died in August 2000, aged six.
The doctors informed his mother and me that they could keep him alive
indefinitely with machines, but his quality of life would be zero. My
wife initially wanted to keep him alive, I wanted to stop his pain. It
was the hardest decision either of us has ever had to make, and I still
feel pangs of guilt and regret eight years later, yet I KNOW we did the
right thing for HIM.
My sympathies go out to Nick and Leslie. As for people commenting on
what they should do, it's all very easy to say these things as an
outside observer. It's certainly not as easy when it is your child. I
hope nobody judges these poor, poor parents who are suffering immensely
at the moment, and will wrestle with their consciences whichever
decision they make.
- DL, Surrey, UK, 2/7/2008 4:23
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this
is a real hard one my head says let her go peacefully as she has no
life but as a mother if it was my child I would find this all most
impossible to do.
- Geraldine, Tottenham, 2/7/2008 4:23
I
wouldn't let an animal suffer like this, the parents are being selfish
with no thought of what the child is suffering. Maybe the benefits are
worth it?
- A. Langley, Kent, 2/7/2008 4:12
I can't say what the right decision is here, but stopping treatment is not playing god and sometimes is the right thing to do.
- Caroline, Cardiff, 2/7/2008 4:04
Who
are they actually keeping her alive for. It is themselves not her if
she had a choice I am sure she would ask to be let go, she does not have
a life.
- RP, Daventry, 2/7/2008 3:55
Let
this beautiful child slip away peacefully - she'll never marry, have
children or enjoy life! The parents should put their own interests aside
and not be so selfish - if you saw a deer in the road with all legs
broken and about to die, you wouldn't TRY and save it as it would never
survive in the real world.
- Alex, UK, 2/7/2008 3:50
May
God bless all three of you. Amber is a beautiful little girl and if she
were mine I would also fight tooth and nail for her. My prayers are
with you.
- Pam Buchanan, Chatham on Canada, 2/7/2008 3:45
This
decision is totally unacceptable. What IS the point of scientists
making medical advances if doctors/hospitals are going to deny patients
the right to try them? This little girl has already lived beyond the
'normal' prognosis of 4 years; she's only needed a few treatments.
Who's to say that she won't live long enough for some breakthrough to
occur?
And besides that, how would any parent feel if they were told that
their child was going to "choke to death" while everyone watched but
nobody did a thing about it? Who would want that end for their beloved
child?
My vet would be allowed to put my cat to sleep if that sort of awful
death was inevitable. Until people are allowed to die a pain-free,
dignified death by euthanasia, doctors should not be allowed to condemn
anyone to such an awful life ending.
- Linda Weeks, Maidstone, UK, 2/7/2008 3:40
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This
is a good case study in the argument against the legalisation of
euthanasia. If that were to occur who knows how many people would be
pressurised in to "dying with dignity" to free up resources.
- Graeme Stickings, Newcastle upon Tyne, 2/7/2008 3:40
But
is that picture "life" from any quality point of view? Is it fair to
extend her suffering? This about what the parents want, not about what
is best for Amber. Let her slip away peacefully.
- Lynn, Amersham, 2/7/2008 2:54
Good luck in your fight for Amber.
- Carol, Wales, 2/7/2008 2:47
I'm sorry but I would not allow any of my family or animals to 'live' like this. Let her go.
- Missy, Auckland New Zealand, 2/7/2008 2:15
My
family and I were put in a similar situation several years ago. My
father was in ICU due to a bad infection that triggered heart, kidney,
liver, and lung failure. He was on heavy life support. As a family, we
had to decide whether or not to take him off life support. However,
there was still a chance my father could have made it (though extremely
small). We decided he had suffered enough and he died almost immediately
after they took him off life support. I had just turned 14 a week
before he died.
The difference is this girl is terminally ill. There is no cure for
Tay-Sachs. There is no chance she will make it. They are only prolonging
the inevitable, extending their own emotional grievances, and their
daughter's emotional and physical suffering. And yes, it is cold to
think about, but there are also OTHER patients that need the resources
the hospital offers. Keeping this girl on life support is a lose-lose
situation for everyone.
I empathize, but they need to let go.
- Kyle Pereira, Thunder Bay, Ontario, Canada, 2/7/2008 0:41
Parents:
Don't give up. Fight for your child's life. Trust in God. When He is
ready, He and He alone will call her to His side. Man has NO right to
take any life, let alone your beautiful little daughter's.
- Sung Ho Cheung, Hong Kong, 2/7/2008 0:36
If
there is strong medical opinion this child cannot live beyond four
years, is it really right to keep her going, just to endure more and
more medical intervention? It doesn't seem she has much quality of life
now and in a case like hers, I think quality rather than quantity is
better. One can understand and sympathize with the poor parents though.
- Renee, Melbourne, Australia, 2/7/2008 0:34
"Almost totally paralysed, she cannot speak and is severely epileptic."
What kind of life can she have? She is 6 and she has the looks of a
suffering child. Whilst it may seem cruel to let her die, it is
sometimes a situation of you have to be cruel to be kind. As much as the
parents can accuse the doctors of playing God or for the fear of cost
refuse to continue treatment, what about the selfishness of the parents
who wants to prolong her life thus her suffering just so they can have
their child by their side one more day? What that of the child? Let her
go in peace when the time comes.
- SF, Kuala Lumpur, Malaysia, 1/7/2008 23:37
I'm
wishing the best for Amber. But regardless of the outcome, her parents
really are the very best. They won't give up on their kids no matter
what, because that's what parents do.
- Dan, Portland, OR, USA, 1/7/2008 23:35
These
poor parents. Having read the headlines this morning re NHS patients
in the UK now being able to have treatment in the EU, perhaps there is
hope for this little girl. I sincerely hope so.
- Chris, Bangkok, Thailand, 1/7/2008 23:20
According
to this article, this child "Amber is one of only 20 children known to
have the the condition. Almost totally paralysed, she cannot speak and
is severely epileptic. But she can see and hear and communicates with
coos. "
She is alive and cognizant. No one has the right to take her life.
- Dot, Dallas, Tx USA, 1/7/2008 22:44
Amber
and her family are in my prayers! My grandson, Conner, died from
Tay-Sachs at 22 months of age less then 2 years ago. It is a
devastating disease with no treatment or cure. Until a cure is found,
education of this and other allied diseases is our only hope.
- Linda, Myrtle Beach, SC, USA, 1/7/2008 22:37
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Sadly
I agree with the NHS. If there is a little person inside that head, she
needs to be set free and not trapped inside her poor maimed body. Her
parents are immune to her suffering as it is all Amber has ever known.
It is truly a sad situation and the very reason that people who know
they might carry these genes must be very careful.
- Erin, New York, NY, US, 1/7/2008 21:20
Perhaps,
if money were not an issue, and the family could truly feel they were
making a choice rather than having to put up a fight, they just might
decide that when the Maker calls you, it is best to go to Him. So sad
they are not allowed the freedom to choose for themselves. It took
time, but eventually after my son died, I eventually realized God has a
plan for us all, and when we have fulfilled that plan, He brings us
home. Maybe this baby should be home rather than in a hospital.
- Sandra G., St. Louis, USA, 1/7/2008 21:09
This
poor little girl has suffered enough in her life - she already has a
terminal illness, why do her parents want to prolong her life and cause
her more suffering?
They should look at the truth - their daughter can not live a
healthy long life - and what their determination to keep their child
alive is costing her in terms of suffering - then make the decision to
let her slip away peacefully as the hospital advises.
Yes it is a hard decision but in this decision I wouldn't want a
child of mine to bear continued suffering, especially when death is only
being staved off by inches.
- Anna, South Island NZ, 1/7/2008 19:54
Blessed are the children of God. Those that are taken early to be by his side.
Small, tiny Angel who has fought a battle strong and hard of her own. Let her know peace as she knows love.
The right decision for her will be made. Glad it is not me who has to commit to such a decision.
Thinking of all those concerned in her life.
- Mia, Lancashire, England, 1/7/2008 18:56
These
people, however much they profess to love their daughter, are acting
selfishly. She may have life but it has no real quality they forget that
if the NHS did not exist she would have died long ago.
- AB, Fife, 1/7/2008 17:06
It
is truly an insult that doctors should take decisions like this to the
court and not listen to the parent's wish and it is frightening that
they are open to the idea of letting the poor little girl die rather
than fighting for her life. Why is the medical profession given up on
life? Why are doctors in the UK given up on people?
- Paula Mendez, Oxon, UK, 1/7/2008 16:44
Life
is sacred. It is NOT a doctor's place to decide if one's 'quality of
life' is 'acceptable.' This is escalating out of control.
- Lisbeth, England, 1/7/2008 16:42
The parents should be listened to.
Miracles do happen and I hope this lovely little girl goes on to show a vast improvement soon.
- TW, London, 1/7/2008 16:21
What sort of Society have we become?
Ian Brady is being forcably kept alive by medical intervention at
great cost to the taxpayer, whilst this little girl is about to be
denied her right to Life. Her parents have the right to do what they
believe is right for her. End of discussion!
- Will, Caracas, 1/7/2008 14:49
This is a shame on Wales and the University Hospital and the individuals who condone death. God's Will be done.
- Charlie, Pennsylvania, USA, 1/7/2008 13:51
How
dare this Government 'hark' on about Child Abuse the way it does,
saying how wonderful and brilliant job they are doing. This is the very
worst type of Child Abuse, withdrawing the right for life, the right to
treatment. Where there's life, the is always hope!
Make no mistake this is all about money and nothing else. How dare
anyone have the right, the authority to inflict this on a very sick
child and the child's family.
Blair, Brown and new labour what a joke. And yet I'm a trade union
guy and proud of it. But these idiots in power are now just turning on
the extremely vulnerable. To deny the right to treatment for a child so
young is both vile and immoral.
Of course I'm sure if it was one their own children this simply
wouldn't happen to them. In the worst case, Brown and Co could pay for
it privately and fiddle their expenses to reclaim the money.
Bless you Amber.
- Graham Sinclair, Sunderland, United Kingdom, 1/7/2008 13:35
Can these NHS people not trust Amber's parents to do their best for her and to know when she has had enough?
If they truly love their daughter there will be no question of attempting to extend her life inappropriately.
Clinical need versus cost is not a good situation, this family must feel even more desperate now.
- Elisabeth, Limoges, France, 1/7/2008 12:14
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