Premature babies: Your stories

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Only nine out of 100 babies born in the 23rd week of pregnancy will survive.

In a column on the BBC News website, award-winning director Adam Wishart, asks the difficult question: Is it right to keep them alive?

BBC News website readers have been reacting to this story. Here is a selection of their comments.

Helen Parkin, London

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Photo: Helen Parkin

My parents were told, prepare for the worst”

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I was born at 29 weeks. In 1985 this was considered to be extremely premature and my chances of survival were deemed to be quite slim.

My parents were told to prepare for the worst, but the doctors continued to do everything they could for me.

I struggled with health issues for the first few of years of my life as a result of being born prematurely.

I am now a healthy 26-year-old woman and apart from one surgery scar I have no other signs of my early problems.

I imagine that some people back in 1985 would have thought that it wasn't worth putting so much effort into such a sickly 2lb baby but I'm very glad they did.

It seems very callous to put monetary value on a baby's life.

Sue, Caterham

I have a disabled son who was born at term. His disability impacts on the extended family and those around him, so I feel qualified to give my opinion.

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It is very challenging in terms of emotion, time and money”

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Keeping extremely premature babies alive at all costs is very challenging in terms of emotion, time and money. We need to have a proper sensible debate about the whole area to avoid devastating, nasty surprises when this happens to a family.

We need more than television documentaries to enable an informed debate. No one wants to even think of losing a child but when weighed against the cost of keeping them alive, and I don't mean the money, it is so all consuming.

It would be kinder if we had a sensible answer that had come from informed debate, so everyone knew that children born before a certain point could be allowed a dignified exit.

Lizzie Smalldon, Buckinghamshire

My son Edward was born at 24 weeks. That was five years ago. I first went into labour at 23 weeks and six days.

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Photo: Lizzie Smalldon

I went into labour at 23 weeks and six days”

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In spite of Edward being under the 24 week threshold the London hospital we were admitted to fought hard to save his fragile life.

At that stage the doctors and nurse on call could not have ascertained whether he had a decent chance of survival.

Fortunately, my son hung on for five more days and was born at 24 weeks and 4 days.

We were warned that if he survived, he had a 39% chance of survival, and he would almost certainly suffer from major disabilities such as blindness, deafness, severe cerebral palsy or other severe complications.

Thankfully, he spent only four months in the neo-natal intensive care unit and is now a very healthy, happy five-year-old with no health issues.

Admittedly, he is a medical miracle but he was given the chance he deserved and has proved that extremely premature babies can lead normal healthy lives.

In those 5 years since his birth medical advances have improved even more. All babies born from 23 weeks should be given a chance because there is no way of determining at birth which will be the strongest.

Dr Brian Sloan, King's College, Cambridge

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Photo: Dr Brian Sloan

I lead a full life in spite of my disabilty”

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Provision should be improved for the disabled but the mere fact that many premature babies encounter difficulties in later life should not lead to the conclusion they shouldn't be kept alive at the outset.

I was born very prematurely myself and I suffer from cerebral palsy. I can not walk unaided. As a lecturer I feel it's safe to say that I lead a full life in spite of my disability.

I can, without too much difficult, command the attention of a room full of young and mature law students.

I firmly believe that having a disability is not a hindrance in terms of attaining personal goals.

The NHS should not ration our health care for it's youngest and most vulnerable patients.

No-one can determine what challenges a newborn baby can overcome.

Gillian West, Aberdeenshire

It is almost impossible to determine the future of a newborn baby and would be callous to label one life more important or more viable in comparison to another. More debate is needed on this difficult subject.

As the mother of a now 12-year-old, ex-premature baby, I can't adequately convey what a roller-coaster of emotions and dashed expectations and heartache it is to have a child born so early.

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The impact on siblings is huge and life-long”

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Whilst the NHS do a heroic job of keeping these babies alive, the cost, in every sense from the financial burden on the NHS and medical insurance companies to the emotional impact on the family is impossible to quantify and I often question the validity of it.

Despite the enormous love I have for my son, there is not one day that I wish it had not been otherwise. He is relatively mildly affected by cerebral palsy but otherwise intellectually unimpaired.

However, the first few years of his life were a nightmare of respiratory failure, emergency surgeries and now, despite surgical intervention, he will probably never walk unaided and he is one of the 'lucky' ones, a relative success story.

Family life is not and never will be what it should have been and the impact on siblings is huge and life-long. It is an emotive, ethical minefield.

The UK, like many countries, has limited support available to people with profound and complex disabilities and the services provided to such children seem to disappear when they reach 18.

Should we be sustaining life if we do not have the resources to cope with the often devastating impact of prematurity further down the line?

Isabel Davis, London

My son was born at 23 weeks and he's now coming up to his 13th birthday. We were incredibly lucky that the doctors at Barnet General and Great Ormond Street did everything they could to keep him alive.

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Every child must be given the chance”

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He was on a life support machine for 17 weeks, there were several occasions when he stopped breathing, he suffered multiple bleeds on the brain and we lived a rollercoaster life of infections and setbacks for many months. He eventually came home at 8-months-old.

He started mainstream school at the correct time for his age and has since gone on to secondary school. Other than having mild difficulties with reading and writing (he's about two-years delayed) there is absolutely nothing wrong with him. He is now a strong, healthy teenager.

If the medical staff had not intervened to keep him alive it would have been an absolute travesty. When these babies are born no-one has any idea what the eventual outcome will be, in fact we were told our son had less than a five percent chance of surviving. Every child must be given the chance.

Peter Fox, Newbury, Berkshire

It is a telling statistic - nine percent survival rate of premature babies with the very likely outcome that nearly all those will be disabled.

It is complete madness for the medical establishment and society to even consider it a viable option, to artificially prolong the lives of extremely premature babies.

It is a waste of resource and gives false hope. It also blights the lives of those individuals who survive. Some old fashioned blunt pragmatism is required.

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