Survival of the smallest

Each year, thousands of babies are born at the limits of viability, and medical science enables many to live. But now the courts are being asked to sit in judgment: should doctors always intervene to save a life? And when is it right to let a child die? Jeremy Laurance reports from the front line of neonatal care
Click to follow
Indy Lifestyle Online

In nursery six of the Elizabeth Garrett Anderson hospital in central London, a baby is gasping for breath. The consultants are clustered around the tiny scrap of humanity, festooned with tubes and wires, inspecting her vital signs, which are displayed on the screen above her incubator. Born at 28 weeks, she weighed 560g at birth, equivalent to half a bag of sugar. Although she grew rapidly at first, now, seven weeks on, progress has faltered. The specialists are worried and think it may be because she is fighting against the ventilator, using up calories she needs to grow. Her tiny chest pumps80 times a minute.

In nursery six of the Elizabeth Garrett Anderson hospital in central London, a baby is gasping for breath. The consultants are clustered around the tiny scrap of humanity, festooned with tubes and wires, inspecting her vital signs, which are displayed on the screen above her incubator. Born at 28 weeks, she weighed 560g at birth, equivalent to half a bag of sugar. Although she grew rapidly at first, now, seven weeks on, progress has faltered. The specialists are worried and think it may be because she is fighting against the ventilator, using up calories she needs to grow. Her tiny chest pumps80 times a minute.

In the neonatal unit of a modern hospital, doctors operate at the limits of medicine, and their new-born patients cling to the edge of life. The babies have lost the protection of the womb, and with warmth, oxygen and nutrients, the doctors try to substitute for its life-giving force. But there are problems.

Bill, his head covered in a bandage, is nine weeks old and has already had three operations, but is not out of the woods yet. Twins Ryley and Roman, born at 24 weeks, close to the limit of viability, are still on ventilators two and a half months later. Raven, aged 13 weeks, has a hole in her heart that has been temporarily repaired, but faces further major surgery before she is a year old. She was given a 25 per cent chance of survival the day before her birth at 30 weeks.

Among the incubators with their flashing lights and beeping alarms, the future of scores of families hangs in the balance. This is medical technology at its most sophisticated. But is it achieving miracles, or creating ethical dilemmas?

In the past month, the parents of two grievously ill babies have taken their doctors to court to compel them to do everything in their power to prolong their lives. Charlotte Wyatt and Luke Winston-Jones suffered from terminal conditions and medical teams felt it was kindest to keep them comfortable and let them die.

But Darren and Debbie Wyatt and Ruth Winston-Jones argued in court for more aggressive treatment to be provided to extend the babies' lives as long as possible. The courts ruled it would be wrong to compel doctors to keep them alive, and that it was acceptable for them to withdraw care when no more could reasonably be done.

The judgments have been welcomed as wise and humane, and accepted by the parents. But they have raised wider questions about the practice of intensive care at the limits of life. In September, a BBC Panorama programme questioned whether too many premature babies were being saved to face a life of disability. Is everything being done that should be done for babies born before their time? Or is too much being done, because it is technologically possible, without regard for the consequences?

Ryley and Roman were born only a day or two beyond the 24-week abortion limit. Today, 10 weeks on, they are lying in incubators in the cramped Elizabeth Garrett Anderson neonatal unit, part of University College Hospital, London. Pink and plump, they are growing well thanks to the top-quality care they have received since being transferred from the East Surrey hospital in Surrey, which took 12 hours.

But, like all babies who are extremely premature, they face problems. They have had surgery to correct heart defects and both have had infections. Ryley has thin bones and developed renal failure for which a kidney specialist is being consulted. Both have chronic lung disease caused by the long period that they have been on ventilators.

In addition, there is a "significant risk" that they might have a neurological impairment, the doctors say. The good news is that there is nothing on the brain scans yet to suggest damage. But it is still early days and, as every parent of a premature baby knows, progress is never smooth.

Heather Andrews, the twins' mother, aged 20, is cheerfully positive about the outlook, as all parents try to be. "When they told me there would be good days and bad days, they weren't joking. First one gets an infection, then the other has a setback. It is like living in a dream; you can't take it in," she says.

She went into labour one Sunday night in Crawley, Surrey, where she lives with her partner, Wayne Baines, 21, and daughter Chloe, four, and was taken to the East Surrey hospital. She was not asked outright whether she wanted the babies resuscitated if they were not breathing when born. "They just said they were trying to get the babies out and it was a case of how they were going to do over the next few days."

In any case, her views are clear. "I think it's wrong when doctors won't resuscitate a baby even though there is nothing wrong with it. If it's a year on and they are making no progress and the baby is struggling, then maybe. But to not even give them that one chance is disgusting."

Her positive attitude reflects that of the unit, which is committed to saving lives, not - as some other units do - counting the cost. From the moment you enter the warren of little nurseries linked by a winding corridor, you sense the atmosphere of optimism and hope. Nurses squeeze past each other, dripping expressed breast milk through tiny tubes into infant stomachs and checking monitors attached to scrawny chests. Alarms beep constantly as traces record heart rate, breathing, oxygen level and blood pressure, while ventilator pipes gently vibrate. And amid the tubes and wires and screens are what appear to be ancient, miniature human beings.

Premature babies lack the subcutaneous fat that develops in the last month of pregnancy and gives full-term babies the fat, glossy look of the new born. Their skin hangs loose in wrinkles and folds, as their lives hang by a thread. Every feature of their existence presents a challenge. The consultant ward round is dominated by discussion of "creatinine levels", "neuronal migration" and "immunoacids". Feeding is more complicated than getting milk into the stomach; many underdeveloped babies are intolerant of food and have to receive nutrients direct into a central vein.

No one could question the commitment of the doctors to saving all who can be saved. Even so, most die whenventilation is withdrawn. Sometimes parents, struggling to comprehend their loss, object.

"We do have a baby now whom we think is inevitably going to die and the parents don't want us to withdraw care," says one consultant. "We don't know when it will happen and the time parents have with their baby is precious. We don't want to go to court."

"If you rush them, it may be something they regret for the rest of their lives. It takes time to adjust," says another.

A striking feature of the ward is the number of babies with major medical problems who are not premature, or only slightly so. A full-term baby with a heart defect transferred from a hospital 200 miles away will require heart surgery. Another, born at 33 weeks, is about to go home after major surgery. This is a key point for Jane Hawdon, consultant neonatologist and head of the unit. In the debate about the dangers facing premature babies and the limits of viability, the risks of a normal birth have been forgotten, she says. A mother of three, the youngest of whom was born seven weeks premature and cared for at the unit, she fizzes with energy and enthusiasm, having experience as both parent and doctor.

"What people don't realise is the casualty rate of having babies, full stop. I spent all my pregnancies petrified because I have seen the unexpected. I never assumed everything was going right until I saw it going right."

She and many of her colleagues were critical of the Panorama programme, which highlighted the risk of disability in babies who are extremely premature and asked whether a 25-week limit should be set below which attempts at resuscitation would not be made, as is done in the Netherlands.

Dr Hawdon rejects this. "We assess cases on an individual basis and we do what we can for them with conscience and rationale. If you go to a special school for handicapped children, you will find a tiny number were born preterm. The rest will have syndromes and congenital disorders that have developed in full-term babies. It depends from which end of the telescope you are looking."

For the parents, struggling with uncertainty, this positive approach is received with gratitude. Despite the cramped conditions, several said they preferred the homespun atmosphere of the Elizabeth Garrett Anderson unit to the more formal concrete and glass of the new Great Ormond Street hospital, the famed children's hospital. Uniquely in the NHS, none had a complaint.

Nevertheless, the risks to premature babies born very early are high. International research shows survival rates are continually improving, but up to 50 per cent of those born before 29 weeks have some kind of educational or behavioural problem later on, compared with one in six of those born at term (37-42 weeks).

For John Wyatt, research director at the unit, this can be seen two ways. "Is the glass half full or half empty? Isn't it amazing that half of these babies have no problems by school age? There is a tendency to concentrate on the negative in this debate. We believe here that a baby who has a realistic chance of benefiting from intensive care should be offered it. There is a resistance to using arbitrary cut-offs."

At present, the medical team is, however, discussing the introduction of a new threshold of not resuscitating babies at 22 weeks. It claims to have a 50 per cent survival rate for those born at 23 weeks - better than many other units.

The debate revolves not only around attitudes to disability, but also around attitudes to parenthood. "If parents are prepared to look after a handicapped child, who are we to make a judgement about that? There is enormous prejudice against disability in this society," says one consultant.

"You may be a parent for a few hours or a few days. That is a privilege," says another.

Every parent hopes that the days turn into weeks and the weeks into years and that their baby will thrive. Frances Bennett, 42, the mother of Bill, has already taken his twin brother Lenny home, two months after they were born seven weeks premature. But while Bill remains in his incubator facing the possibility of more surgery, his mother feels she cannot celebrate. "Not till they are both home," she says.

Yet for Eric and Olenka Schwer, aged 35 and 27, that moment has come. Raven is their first baby and today she is going home, 13 weeks after they were told she had a one-in-four chance of survival. Sitting in the tiny parents' room, Raven lying on her father's chest, Olenka says: "It was scary but we had hope. We had bad days, but we were lucky."

A young doctor checking the brain scan of a 28-week gestation infant in the intensive care unit next door, says: "Should we be doing everything we can? That is the million-dollar question. We do what we feel is possible, based on the facts - the gestation, the size, whether there was an infection in the mother. Different parents have different attitudes. If you have someone who has had 10 pregnancies and no live births, they are in their mid-40s and this is their last chance, you can see where they are coming from."

Comments