Keeping ‘miracle’ babies alive is a disaster for all

Seven or eight years ago I found myself in a small, homely ward in a hospital for people with learning disabilities in Holland. The air was full of the noise of pain.

The middle-aged patients in this ward were severely disabled: they could not see or talk or sit up or move much, but they were lying on beds or in special chairs. They all appeared to be in great distress.

Most of them were crying out intermittently and sometimes writhing, as if in pain; one or two were restrained with special tapes and straps to stop them harming themselves. Although they were all being tenderly cared for by wonderful nurses, with plenty of personal attention and attempts to comfort and stimulate them, they were absolutely wretched.

The person showing me around the hospital told me that they had almost all been badly damaged at birth — victims of the poor obstetrics of the past.

I commented that good modern obstetrics presumably means there will now be many fewer young patients with such terrible disabilities. My guide shook her head. The numbers are more than made up these days, she told me, by extremely premature babies from neonatal intensive care, who survive — but only at a high cost. In other words, not despite but because of its dazzling progress, modern medicine is still producing damaged babies.

I was shocked but not exactly surprised. Because I have always had a personal interest in disability and the pain it causes to all concerned, I have always felt instinctively wary of the high-tech neonatal intensive care units.

I believe that it is probably a mistake to work so hard to keep premature babies alive, when they try so hard to die and when the likelihood is so high that they will be damaged if they survive, perhaps seriously.

These high-tech wards have always looked too much like laboratories, where nurses and doctors are in effect — whatever their motives — doing painful human experiments to make medical discoveries.

The sad case of Charlotte Wyatt in the High Court last week took me straight back to that ward in Holland. It cannot be right to strive to keep alive babies who will be condemned to a life of such wretchedness.

Charlotte is, it seems, such a baby.

She was born three months prematurely, five inches long and weighing only a pound. Now 11 months old, she is deaf, blind and unresponsive and has no feelings other than continuing pain, according to her doctors. She regularly shows signs of distress. She is sedated and fed through a tube 21 hours a day and needs constant oxygen.

Charlotte has stopped breathing three times and has severe and permanent problems with her brain, heart, lungs and kidneys. Intermittently she is stabbed with needles. She will never be able to leave hospital. For as long as she lives she will be severely disabled.

Charlotte’s doctors do not wish to resuscitate her, should she stop breathing again. Her parents, who are Christians, wish them to do everything possible to keep her alive.

Her doctors therefore went to the High Court last week, seeking permission not to put Charlotte on a ventilator the next time she develops breathing difficulties.

Her parents went there to challenge them. This looks like a classic painful dilemma and it has certainly hit the headlines. However, for once I do not think that it should be so difficult for the court to decide what is right. It is the wider implications that are difficult.

Under current law, parents have the power to decide what medical treatment their child receives. But they cannot insist on treatment that doctors think is inappropriate or causes more suffering than good to the child.

In this case the doctors’ arguments appear to be overwhelming and some of the parents’ arguments appear weak: they have reportedly said that “the hospital are trying to get us to pull the plug” and this would mean “killing our daughter”. That is incorrect.

The paediatrician has said: “I have no wish to stop treating Charlotte. The only thing I feel strongly about is that it’s not in her best interests to escalate her treatment to such that she requires ventilation.” That is far from pulling the plug or killing.

This case seems to be as close as it ever gets to black and white.

What remains a grey area, however, is the question of neonatal care and the constant resuscitation of premature or damaged babies. I wonder whether many people’s attitudes might change if they were aware of the risks.

I also wonder whether so many parents would long so desperately for their babies to be kept alive at all costs if they knew what the personal costs really were. In my experience, this has so far been unthinkable and unmentionable. And I wonder how it happened that this poor baby was, despite her terrible disabilities, medically forced to survive to 11 months.

Why was it ever considered in her best interests to do everything possible to keep her alive? I find it truly shocking. Before all this neonatal high-tech existed, such babies would have died at birth. And for most of human history, God has apparently put up with that.

I am not suggesting that nature knows best. Mother Nature can be extremely cruel. But there are times when medicine, which is supposed to relieve suffering, can be even more cruel. There are fates worse than death.

Two weeks ago, by coincidence, Panorama broadcast a sobering programme about extremely premature babies. It discussed the biggest study ever conducted worldwide, which followed babies born in Britain in 1995 at less than 26 weeks’ gestation — three months prematurely, like Charlotte.

I could not help crying when I saw the tape. The rate of disability is horrifying. Of the 811 babies given intensive neonatal care in the study, only 300 went home; of those, only three children were without any disability at all. One per cent.

A quarter of the children have severe disabilities, such as cerebral palsy, blindness, deafness or grave developmental problems. Eighty per cent now have some physical or mental disability, or both, and 40% have moderate to severe learning disabilities (formerly called mental handicaps) as against 1% in the general population (a “moderate learning disability” is a euphemistic term for a serious lifelong handicap).

The suffering of some of their families is indescribable, to say nothing of the astonishing cost of the care.

This programme confirmed all my worst suspicions about what was done to these “miracle” babies. It is experimentation; a doctor in the film admitted that in 1995 they really did not have a clue about disability rates at all. Yet they proceeded with these horrifying, intrusive, painful treatments with their unknown but terrible outcomes. It was only recently that they agreed that these babies feel pain.

As one of the doctors now says, those babies who have survived with severe disabilities represent a medical, social and economic disaster. It is also, and more importantly, a personal and family disaster.

In Holland doctors no longer treat such extremely premature babies. British doctors should follow their example.