There is something otherworldly about the picture that appeared around the world yesterday: two tiny brown-pink feet, almost translucent, poking through an adult's fingers. You had to look twice to be sure that they were indeed feet.
They belong to Amillia Taylor, who was born in Miami last October, 21 weeks and six days after conception. She weighed less than 10oz at birth - not even as much as two ordinary bars of soap - and she was just 9½ inches long. Amillia, who is expected to be discharged from hospital in the next couple of days, is officially the most premature baby ever to have survived.
Amillia's parents, understandably, are immensely pleased, not least because "She's like a real baby now," as her mother, 37-year-old teacher Sonja Taylor, told the Miami Herald. "Now I can feel her when I hold her." The doctors involved, having initially been prepared to break the news of the baby's death to parents who had already been through a gruelling IVF programme and scare after scare during pregnancy, are expressing informed incredulity. "This is not the norm," says neonatologist Dr William Smalling. "Really, greatly, most of these babies don't survive ... This is a miracle." Even more surprisingly, apart from some expected respiratory issues, Amillia appears to be doing well: the prognosis is excellent.
To put Amillia's achievement into perspective: babies who go to full term are born at 37 to 40 weeks. According to the American Association of Pediatrics, babies born at less than 23 weeks are not considered "viable". According to a landmark report published by the Nuffield Council on Bioethics late last year, which provides guidelines that all British neonatologists and paediatricians are asked to consider, babies born before 22 weeks and six days gestation should not generally be resuscitated. Below 22 weeks, no baby should be resuscitated. "For this age group, we consider current attempts to resuscitate a baby to be experimental," the report said. Even between 23 weeks and 23 weeks and six days, there is no legal obligation on doctors to try to save a baby if they judge it to be against the child's best interests.
Meanwhile, although it doesn't often happen, the Abortion Act allows terminations to be carried out until 24 weeks in Britain; any time after that there must be incontrovertible medical evidence that it would be dangerous to continue. The law in the US is predictably fraught and unclear, and in any case varies from state to state. Roe v Wade bans it after the foetus is viable, which, as Amillia has shown, is something of a contestable point.
In fact Amillia would not have lived at all if her mother, in desperation, had not deceived doctors about how far along she was. Sonja, who had had to deal with cervical abnormalities and infections during pregnancy, showed signs of labour at 19 weeks; nine days later doctors realised that they could delay a vaginal birth no longer and performed a caesarean. Incredibly, Amillia was breathing without assistance and even made several attempts to cry when she emerged; doctors assumed she might be 23 weeks old and Sonja did not disabuse them. It was only later that it emerged how early Amillia had really been. At a press conference later, one of the doctors said that Sonja had been in such distress for so long that the hormones she was producing actually helped Amillia to survive. Now she has done so, it is time to consider her future.
Fifty years ago, of course, she would not have survived (she would probably not have been conceived, either, but that is another issue), and no one would have expected her to; in many countries in the world babies like her still don't. She is, of course, oblivious to her record-breaking status, or the ethical dilemmas that she represents. How and why we prolong life and what that life will finally be like are some of the most sensitive issues of our age. Survival is not everything: at what point should medical heroics cede to considerations of the best interests both of the baby and of her family? Is it even possible to make those calculations?
"There are grave doubts about it and there have to be," says Hilary Rose, professor of the sociology of science at City University. "I think medicine tends to regard life itself as the great achievement, and of course any parent out of their mind with anguish is also going to feel that. But when we are calmer we want the child to have a good chance of life, to enjoy life. Somehow one has to provide a caring environment so that parents, who are the ones who are going to have to care for these children, can make a calm decision. The pressures on them, particularly if conception has been difficult, are enormous. I do think that society has to think about these things much more deeply and carefully."
Babies born prematurely face a daunting array of problems, both immediately and in the long term. At less than 23 weeks, foetuses have very little in the way of lungs, or brains. In fact, says John Wyatt, a professor of neonatal paediatrics at University College London Hospitals NHS Foundation Trust, who also has a longstanding interest in medical ethics, "All the organs are extremely immature. The critical issue is the lungs. Even with machines, it's impossible to get oxygen in because the lungs are almost solid. Trying to keep the baby alive may involve inflicting a very high degree of irretrievable damage. The skin is often very thin, and the kidneys underdeveloped. The brain is extremely immature, and very prone to injury, especially bleeding. Furthermore, follow-up studies suggest that babies who survive below 23 weeks have a very high chance of developmental or neurological problems."
A 1995 study quoted in the Nuffield report records that of 138 babies who showed signs of life after being born at less than 22 weeks, only two survived to be discharged, and a follow-up at six years of age found that one of those two had severe disabilities, classed as "likely to make a child highly dependent on care-givers, and involving one or more of the following symptoms: cerebral palsy that prevented the child from walking, an IQ score considerably lower than average, profound sensorineural hearing loss, or blindness." (The other child was classed as mildly disabled.) Quite apart from the state of the child, such levels of disability cause great stress to the parents and to their relationship.
"Should one really be trying at all to keep that baby alive?" asks Professor Richard Nicholson, editor of the Bulletin of Medical Ethics. "Chances are it will require an enormous amount to be spent on it for the rest of its life. We have much less experience of death, so we have become much less willing to accept it. In countries where infant mortality is higher it would be seen as absurd. We live in a society where we have become addicted to physical existence. It's totally unsustainable. Our attempts at the moment to keep every human physically alive as long as possible will make it less likely that the human race will survive climate change."
Wyatt urges caution, however. According to the premature baby charity Bliss, around 80,000 babies are born prematurely in this country, of whom approximately 17,000 require incubator care. Around 5,000 are born before 31 weeks; fewer than 300 are born between 22 and 23 weeks. "If you take the case of all very premature babies," says Wyatt, "the majority do well and go to normal schools, and do the normal things. However, the studies confirm that there is a high incidence of educational and behavioural problems. Of babies less than 28 weeks that figure is about 50% - but that doesn't mean to say it would be better not to have given them a chance."
At the same time, he, along with many others, is uncomfortable about "this idea of a record-breaking Olympics, which is not in the best interests of patients and children. I think this is clearly an extremely unusual case, and entirely outside our experience. Most parents, when given the facts, would accept that the best thing for a baby born below 23 weeks is to allow nature to take its course, and most neonatalogists would agree that they shouldn't be resuscitated. And yet ... we need to decide what is best for each individual baby. A premature baby is as much a member of the human community as anybody else, and deserves the best care that's available. By and large this care has been extremely successful. There are thousands going into adulthood who previously wouldn't have done so. There are some children at the extremes, for whom intensive care can't provide hope, and who will not survive. In those circumstances it's best not to start."
At the Baptist Children's Hospital in Miami, where Amillia was born, doctors found that even caring for such a baby, once she was seen to be viable, was like charting new territory. "We didn't even know what normal blood pressure is for a baby this small," says Smalling. But Amillia, against all the odds, now weighs just over four pounds. She can bottlefeed. Once home she will be dependent on asthma medication, and will need Vitamin E for her skin. For a while yet, every move she makes will have to be monitored; every time her skin might be damaged - such as at bath time - special precautions will have to be followed. She may require some supplemental oxygen. But in many respects she is beginning to resemble a normal baby.
"We are delighted to hear that Amillia is doing well and is able to return home with her parents," says Professor Margaret Brazier, who chaired the Nuffield committee. "In our report we suggest that attempts to resuscitate babies born at or before 21 weeks six days should normally only take place within a clinical research study. These are not intended to be hard and fast rules, and each case will always need to be considered individually. We also recommended that any guidelines should be reviewed regularly and revised to reflect any changes in outcomes for extremely premature babies. Cases like Amillia's would need to be taken into consideration".
'You think - will my child be normal? But ultimately, you don't care'
The mother of a premature baby writes
On my desk is a photograph of my eldest daughter at two days old. This treasured picture shows an emaciated form lying prone in an incubator. Her skin is grey and thin; her face is hollow and fragile; there are tubes taped to her cheeks and protruding from her nose and mouth. Her eyes are closed: you can tell that she's conserving every bit of her energy just to stay alive.
Rosie, my daughter, was - like Amillia Taylor - born long before she was ready to leave the womb; long before she was ready to look cute; long before she was ready to breathe and eat and stay warm on her own.
I am in that picture on my desk, too. I am gazing at my daughter: and the strange thing is that, although you would find it hard to identify the grey shrimp in the box with what we generally think of as an appealing newborn, you would recognise the look on my face straight away. I am a proud, adoring new mother. I am utterly and entirely caught up in my child's existence.
I was just 28 weeks pregnant - 12 whole weeks away from when I thought I would be giving birth - when Rosie was born, delivered by caesarean after I developed pre-eclampsia over the space of a weekend.
It was the most extraordinary transformation of my life: in the morning I was a journalist at my desk; by the afternoon I was at my doctor's surgery; by nightfall I was in a hospital ward; and by dawn the following morning I was in a high-dependency unit with my 2lb 10oz daughter in the special care unit on the floor below. For the next two months, my entire world revolved around a tiny baby in an incubator; first, whether she'd survive, and then how quickly it would be before she was well enough to come home.
Of course, Rosie wasn't as early as Amillia, who arrived just short of 22 weeks' gestation, and Rosie was born two pounds heavier, but I understand why Sonja Taylor, Amillia's mother, lied to hospital staff about her baby's gestation, and why she did everything humanly possible to keep her child alive. I think stories like this show that there shouldn't be an artificial cut-off point with premature babies - a rule which says that before a certain date, we won't save your baby, end of discussion. Every case should be considered on its own merits, because while it's all very well chewing over the ethics of keeping very premature babies alive - talking about death, talking about horrific outcomes - the bottom line is that there are an awful lot of individual, complicated and emotional - not to mention financial and practical - issues at stake.
Not to mention a baby who, however small and premature, has a personality all of his or her own; not to mention doctors whose views may be conflicting; not to mention a nursing team who may also have different viewpoints. The whole thing's very messy. And in the midst of it all there's the powerful, emotional force of a parent's love.
Right from the start, Amillia's mother knew her baby was unique, irreplaceable, perfect. Know this, and you might begin to understand why parents of premature babies will plead, pray, beg and even cheat and lie about their baby's gestational age, if it's going to make a difference as to whether they get the treatment to keep their baby alive, to make their baby better, to take their baby home.
You worry about their future, of course, and Amillia's mother will be worrying right now. You scan the pictures in the special-care baby unit of children whose lives started here, and you find yourself thinking: are they normal? Will my child be normal? But even though some of the children in the pictures don't look "normal" - they're too thin, they've got a squint, they're in a wheelchair - you don't ultimately care whether that is what is going to happen to your baby. You hope everything will turn out fine, of course you do: but you already know you love this baby anyway, and you know that nothing is going to change that. Not a doctor's grim predictions today; not a teacher's pessimistic evaluation tomorrow; not the fact that your friends' babies can do more, and earlier. You have that one, precious person - I have my Rosie, Sonja Taylor has her Amillia - and the world will be brighter and better because of it.
Joanna Moorhead
