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'Our daughter has the right to life', say parents of terminally ill girl, 6, whom doctors say should be left to die in hospital

from Mail Online:

By Andy Dolan
Last updated at 11:44 PM on 01st July 2008

amber hartland

Cherished daughter: Amber Hartland at the age of two

The parents of a terminally ill girl face a battle with the NHS to keep their six-year-old daughter alive.

Amber Hartland, who suffers from the disease Infantile Tay-Sachs, is being treated for a chest infection brought on by the genetic disorder.

But doctors have warned her parents, Nick and Lesley Hartland, that it could be the last time they will treat her.

Infantile Tay-Sachs is an incurable condition which attacks the nervous system. Victims usually die before the age of four.

It is thought that, given Amber's prognosis, doctors believe the suffering caused by treatment outweighs the benefits.

The case echoes that of Charlotte Wyatt, the severely disabled child whose parents eventually won the right for her to be revived in the event of a collapse, despite severe heart and lung problems from her premature birth in 2003.

Amber is receiving care at the Paediatric Intensive Care Unit of the University Hospital of Wales in Cardiff.

Cardiff and Vale NHS Trust is now applying for a court to rule on whether it can stop treatment.

The trust said yesterday only that it would be acting in Amber's best interests.

Amber's parents have accused the hospital of wanting to 'play God'.

They said staff were more concerned about the cost of her treatment - estimated at £2,500 a month - than prolonging her life.


Nick Hartland and Lesley Gronow, who are battling with the University Hospital of Wales, Cardiff over the treatment of their daughter Amber Hartland

Mr Hartland, 31, a financial adviser, and his 43-year-old wife, a foster carer, have both given up work to look after their daughter.

Mr and Mrs Hartland said Amber has only needed additional hospital treatment five times in four years.

The last occasion was on Thursday when they were given the trust's decision.

Mrs Hartland, who also has a daughter, Ria, 18, from a previous relationship, said: 'A consultant told us, 'She's reached the end of her life,' and wanted us to agree to turn off her life-support.

'He would not explain why they wanted to do this but he realised that we would not agree so he said the only person to decide should be a judge,' she added.

Enlarge   Amber Hartland

Amber Hartland's parents say that their daughter has the right to live her life

'It's been suggested we are cruel for wanting to keep Amber alive but it is even more cruel not to treat her and allow her to die.'

She said they will move if the hospital wins the legal battle so Amber can be treated elsewhere.

'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.

Mr and Mrs Hartland both carry the gene that causes the disease and passed it on to their daughter.

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.

Her condition was improving yesterday and she is expected to be taken off her ventilator later today.

Ian Lane, medical director of the Cardiff and Vale NHS Trust, said: 'We will continue to put Amber's best interests first.

'In doing so, we are now asking the courts to decide on the best course of action for Amber's future care.'

He said the case was 'very complicated and sensitive', and the trust did not take decisions about such care 'lightly'.

The Hartlands' solicitor, Rhodri Williams, said: 'Amber does have a quality of life. We will seek to uphold her fundamental human rights.'

In 2005 the parents of Charlotte Wyatt won their legal battle over her right to life.

Doctors at St Mary's Hospital, Portsmouth, had applied to the High Court for permission not to resuscitate Charlotte in a life-threatening situation.

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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.

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.

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.

"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?

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.

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.

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.

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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.

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?

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.

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.

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.

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.

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.

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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.

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.

Good luck in your fight for Amber.

I'm sorry but I would not allow any of my family or animals to 'live' like this. Let her go.

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.

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.

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.

"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.

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.

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.

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.

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.

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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.

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.

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.

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.

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.

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?

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.

The parents should be listened to.

Miracles do happen and I hope this lovely little girl goes on to show a vast improvement soon.

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!

This is a shame on Wales and the University Hospital and the individuals who condone death. God's Will be done.

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.

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.

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