What hope for babes born too early?

FIFTEEN years ago the chance of a very premature baby surviving was only 50:50. But thanks to research and advances in medical science, the outlook has changed dramatically.

Dr Jonathan Wyllie, who runs the neonatal intensive care unit at James Cook University Hospital in Middlesbrough, says things have improved beyond recognition for many premature babies born below 28 weeks.

But the advances in medicine only go so far and when doctors and nurses are confronted with tiny babies born 24 weeks into a pregnancy that should normally last around 40 weeks, the chances of survival are still only around four in ten. Recent UK statistics show that even younger babies, born after just 23 weeks in their mother's womb, have less than a one in five chance of survival.

But it's not just a question of survival. There is also the question of whether the baby will have a reasonable quality of life or whether the child and its parents will face a lifelong battle against serious disability.

Research highlighted by a BBC Panorama report last month suggests that 40 per cent of babies born alive at less than 26 weeks gestation have significant learning disabilities. A quarter of the 314 out of 1,200 very premature babies who survived had severe disabilities, including blindness, deafness, cerebral palsy and arrested development.

Figures like these have fuelled debate within the specialist area of neonatology - the care and study of newborn babies - as to whether such results mean doctors should continue to help these very premature babies survive.

Experts in the UK are divided but their colleagues in Holland have already made it clear that they will not treat babies born at less than 25 weeks gestation, except in very exceptional cases.

The issue of whether it is right to keep a very young baby alive when the prospect of survival is poor is currently being fought out in the courts by a couple from Portsmouth.

Charlotte Wyatt weighed just one pound when she was born 26 weeks into her mother's pregnancy. She has serious heart and lung problems and has stopped breathing three times.

Specialists at the Portsmouth Hospitals NHS Trust say she should be allowed to die if her breathing stops again but her parents, Debbie, 23 and Darren, 32, want doctors to continue to try to resuscitate her.

Normally these matters do not come to court but both sides appear to want the issues raised to be aired in public.

For Dr Wyllie and his colleagues at the James Cook neonatal intensive care unit, the question of whether to treat a very sick, very young baby with a poor outlook is an every day issue.

"We currently have two 23-week babies and two 25-week babies in our unit. Babies born 22 to 23 weeks into the pregnancy are border-line and it is thought that babies before 22 weeks are not viable," he says.

"Mums and dads come in and they want to hear that everything is going to be all right. To have to face stark reality is very difficult for them," the consultant adds. "It never ceases to amaze me how parents manage during a phenomenally stressful time. Even when there is a good outcome, the parents have been through enormous stress, as have the babies."

The key to keeping parents on side is to communicate, says Dr Wyllie.

"What you do or don't do should be a decision taken with the parents. You have to keep them as fully informed as possible along the way."

Families are welcome to join the twice daily consultant ward rounds at the James Cook unit and hear the latest news about their baby, and the question of what should be done if a very sickly baby stops breathing is always discussed with the families.

"We don't believe in life at any cost because the cost is paid by babies and their parents," the consultant says.

Neonatal specialists have to use their professional judgement to decide whether the fight is hopeless. Occasionally parents will approach consultants and raise the issue of ceasing treatment but Dr Wyllie says the initiative usually comes from the medical side.

"It is an incredibly fraught area. It requires judgements about quality of life and about chances. If you can see no way that a baby will survive, you have to consider your options. You have to have a belief that there is some good for the baby or the chance of some good coming of it."

These "edge of life" decisions are not easy for anyone but Dr Wyllie believes the consultant has a professional duty to give parents their honest opinion. "I personally don't think we should be expecting patients to make the decision about stopping care."

A decision on future treatment will not come as surprise to parents if they are kept fully aware of their child's condition, he says. "We always try to put things in straightforward terms and parents are encouraged to ask questions. Many want to do that, but some don't."

At James Cook the policy is for parents to have an initial veto of any proposal to withdraw care. But if the situation does not improve after this initial veto the family are told the facts of the situation and asked for their support for any subsequent action deemed necessary by doctors.

"A veto might make you re-assess the situation, it might make you get a second opinion, but I think it is unreasonable to go down the American road where parents have to sign something to say stop this or stop that treatment," says Dr Wyllie.

While there is much publicity around very premature babies with poor chances of survival, Dr Wyllie stresses that the outlook is good for slightly older babies.

Statistics show that even at 28 weeks the survival rate is 87 per cent.

Apart from improvements in technology, including incredibly sophisticated ventilators controlled by computer chips, two breakthroughs in neonatology have greatly improved the chances for premature babies.

"The major improvement has been to give steroids to the mother before they deliver and a substance called surfactant to babies just after they are born," says Dr Wyllie.

The steroids, usually given by injection, accelerate the development of the foetus in the womb, strengthening and maturing organs and tissue so the baby has more of a fighting chance when they are born.

Surfactants, either chemical or animal-derived, are put into the baby's lung down a tube to assist breathing by reducing surface tension. In very premature babies the lack of natural surfactant means that each breath is very laboured. "The surfactant tides the baby over until they start producing their own supply. Babies treated in this way do better and need less ventilation," says Dr Wyllie.

After spending more than five months visiting her premature twin babies, Alfie and Eliza, Alison Morley, 28, from Thorntree, Middlesbrough, began to feel like part of the furniture.

After giving birth when she was just 25 weeks into her pregnancy both babies were immediately transferred to the neonatal intensive care unit and put on ventilators.

"I have to admit that it was very scary at the beginning but I had lots of support from everyone. The staff at James Cook are absolutely fantastic," she says.

Recently allowed home for the first time, Eliza is doing "absolutely smashing", according to mum, and although Alfie still needs oxygen because of lung problems which are typical of premature babies, Alison is hoping that he will soon be able to manage on his own. Her partner, taxi driver James Fryett, is delighted that the twins are finally home.

But all of the high-tech equipment at James Cook would count for nothing without the contribution of highly trained doctors and nu rses.

Apart from having two internationally known neonatologists at James Cook - Professor Sunil Sinha and Dr Win Tin - the hospital has a loyal workforce of nurses.

"Our nurses our fundamental to maintaining good levels of care. We are fortunate that we have not had a recruitment problem unlike some hospitals elsewhere in the country," says Dr Wyllie, whose department treats around 130-140 premature babies every year.

Leaving the unit, you glimpse tiny babies festooned with tubes and wires wriggling under glass. But what takes the eye is the sign on the door of that high-tech treatment area. Peter Rabbit's Room. A homely touch in a place where tiny children's lives hang in the balance.