Page last updated at 07:21 GMT, Wednesday, 11 February 2009

Care court battle parents speak

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Parents of Amber Hartland, Lesley Gronow and Nick Hartland remember their daughter

The parents of a six-year-old girl at the centre of a dispute over her care have spoken about their experience.

Amber Hartland, from Cwmbran, Torfaen, had an incurable brain disorder and died in November, before a court case over her care could begin.

Her parents said they were hurt by doctors' wishes to withdraw treatment if she became ill again.

Cardiff and Vale NHS Trust said care was never refused and it always acted in Amber's best interests.

Ian Lane, medical director at the trust said it stood by its actions which it believed were consistent with guidelines.

Amber's parents

We crammed a life-time into six years and nine months, and I've got not one regret whatsoever...
Amber's father, Nick Hartland

"In cases when parents and the medical team cannot agree on decisions about ongoing care, the Court of Human Rights has ruled they must be given the opportunity to put their case before a judge," he said.

In July, doctors told Amber's parents she would no longer be admitted to intensive care at the University Hospital of Wales in Cardiff.

Cardiff and Vale NHS Trust subsequently asked for a court to decide "on the best course of action", but Amber died before the case reached court.

Amber's father, Nick Hartland said he still felt "very hurt" about the situation.

"There need to be set guidelines drawn and a full spectrum of opinions, not just the doctors who are involved in the care, before this action could be taken," he said.

Tay-Sachs

When Amber was around eight months old, her parents noticed she was not reaching the normal milestones of child development.

Just before her first birthday, she was diagnosed with Infantile Tay-Sachs, a disorder which left her almost completely paralysed, unable to speak and epileptic.

"The words were, they were going to tell us a lot of things but we would remember only one - that our daughter would be dead by the age of three," her mother Lesley Gronow said.

Amber Hartland
Amber's parents say she lived longer than any other child with Tay-Sachs

"They told us it was a lysosomal storage disorder, which of course we had no idea what it was, and even our own doctor went out and bought a book specially."

Amber was prone to chest infections and needed intensive care treatment to recover.

But her parents said she only spent 53 days in total in intensive care and had a good quality of life.

"I don't think Amber could ever have fully understood everything that was going on, but she enjoyed being outside, we took her abroad, we tried to make every single day of Amber's life as special as we could.

"A lot of people were under the impression that Amber was in hospital all the time, and Amber wasn't - you know we were always going places with her," Ms Gronow said.

"They'd never seen Amber outside of the hospital setting so they had no idea what her quality of life was like," said Mr Hartland.

'Compassion'

Mr Lane said the trust recognised the "exceptional level" of care given to Amber by her parents.

"The trust's dedicated medical team provided the highest quality care with compassion, and always acted in Amber's best interests.

"Care was never refused, but the issue which was under consideration, were the circumstances under which continual resuscitation may no longer have been in her best interest.

"The trust's highly qualified and specialist staff work closely with parents to help them make choices with regard to their child's care when they have a life-limiting and severe neurodegenerative disease such as Amber's.

The concern of the whole specialist medical team, not just one individual doctor, was that continued referral for resuscitation was not in Amber's best interests
Ian Lane, Cardiff and Vale NHS Trust

"The concern of the whole specialist medical team, not just one individual doctor, was that continued referral for resuscitation was not in Amber's best interests.

"She had severe neurological disabilities and was in the terminal stages of her illness. This concern, we believe, was consistent with advice for the withholding of life sustaining treatment, according to the guidelines by the Royal College of Paediatrics & Child Health.

"This view was shared by an independent medical expert in paediatric intensive care, who provided evidence for the guardian appointed by the court to act independently in the child's best interests.

"This is obviously a very complicated and sensitive situation that has been difficult for all involved. We do not take decisions about ongoing care lightly and stand by our actions."

'Amazing'

Amber's parents said they were pleased she had died at home with her grandparents and sister with her, as they had wanted.

Mr Hartland said they would have fought for their daughter as long as she was fighting.

"We crammed a life-time into six years and nine months, and I've got not one regret whatsoever, because, I've got to be honest, she was amazing and she made our lives amazing with it as well."

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