In February, newspapers hailed “miracle baby”Amillia, claiming that she is the earliest-born surviving premature baby ever recorded. Born in October at a gestational age of just twenty-one weeks and six days, she weighed only 280 grams, or ten ounces, at birth. Doctors did not expect Amillia to live, as previously no baby born at less than twenty-three weeks had been known to survive. But, after nearly four months in a Miami hospital’s neonatal intensive-care unit, and having grown to a weight of 1,800 grams, or four pounds, doctors judged her ready to go home.
There was a certain amount of hype in all this. Amillia was conceived by in vitro fertilization, so the day on which conception took place could be known precisely. Usually this is not possible, and gestational age is calculated from the first day of the mother’s last menstural period. Since babies are usually conceived around the middle of the menstrual cycle, this adds about two weeks to the date of conception, and Amillia should, therefore, have been regarded as being born in the twenty-third week of pregnancy. It is not uncommon for such babies to survive. Nevertheless, Amillia was certainly a very premature and very tiny baby (according to one source, the fourth-smallest baby to survive).
We can, of course, be delighted for Amillia’s parents that their much-wanted daughter has done so remarkably well. But the use of all the resources of modern medicine to save smaller and smaller babies raises an issue that needs to be discussed.
In an article published in last November’s Medical Journal of Aus¬tralia, Dr. Kei Lui, director of the department for newborn care at Sydney’s Royal Hospital for Women, with colleagues at several other hospitals, reported on the outcome of a workshop involving 112 professionals drawn from each of the ten units offering the highest level of intensive care to newborn infants in New South Wales (Australia’s most populous state) and the Australian Capital Territory (the district surrounding Canberra).
The workshop included not merely medical specialists in the relevant disciplines but also midwives, neonatal nurses, and parent and community advocates. Before considering any proposals, the participants were given the results of a study of the outcome of births of babies at less than twenty-six weeks gestation in the region between 1998 and 2000. The study showed that no babies born at less than twenty-three weeks survived. Between twenty-three and twenty-five weeks, the percentage who survived improved from 29 to 65.
The survivors were followed up and examined when they had reached two to three years of age. Among those born at twenty-three weeks, two-thirds had some form of functional disability, and, in one-third of all assessed survivors at this gestational age, the disability was rated as “severe.” That meant either a severe developmental delay, blindness, or that, because of cerebral palsy, the children were unable to walk even with the assistance of equipment such as walkers. On the other hand, of those born at twenty-five weeks, only one-third had any form of functional disability, and only 13 percent had a severe disability. Clearly, two additional weeks inside the mother’s womb makes a huge difference for the child’s chances of survival without disability.
In these circumstances, what should doctors—and society—do? Should they treat all children as best they can? Should they draw a line, say at twenty-four weeks, and say that no child born prior to that cut-off should be treated? A policy of not treating babies born earlier than twenty-four weeks would save the considerable expense of medical treatment that is likely to prove futile, as well as the need to support severely disabled children who do survive. But it would also be harsh on couples who have had difficulty in conceiving and whose premature infant represents perhaps their last chance at having a child. Amillia’s parents may have been in that category. If the parents understand the situation, and are ready to welcome a severely disabled child into their family and give that child all the love and care they can, should a comparatively wealthy, industrialized country simply say, “No, your child was born too early”?
Bearing these possibilities in mind, instead of trying to set a rigid cut-off line, the workshop defined a “gray zone” within which treatment might or might not be given, depending on the wishes of the parents. If the parents of an infant born at twenty-three weeks did not want their baby treated, every participant would accept that request. There was consensus that, although the possibility of active treatment could be discussed, it would be discouraged. Even at twenty-five weeks, 72 percent of the participants would not initiate treatment if the parents did not want it. By twenty-six weeks, however, the consensus was that the infant should be treated, except in unusual circumstances.
In the United States, although the American Academy of Pediatrics states that babies born at less than twenty-three weeks and weighing less than 400 grams (14.2 ounces) are not considered viable, it can be difficult to challenge the prevailing rhetoric that every possible effort must be made to save every human life. Instead of openly discussing the options with parents, some doctors will instead say that treatment is “futile” and “nothing can be done.” In fact, in these cases, active treatment would often prolong life, but there would be a high probability of severe disability. In this situation, to say that treatment is “futile” is to make the ethical judgment that life with such a high level of disability is either not worth living or not worth the effort required by the parents and the community to make it possible for the child to live. Other doctors believe that all human life is of infinite value and that it is their duty to do everything possible to save every baby, irrespective of the likelihood that the baby will be severely disabled. In neither of these situations are parents given the chance to participate in the decision about their child. While that may relieve them of the heavy burden of responsibility, it also denies them the opportunity to say how precious this child is to them and whether or not they could love and welcome into their home a child with a severe disability. That is why, in making life-and-death decisions for premature infants born in the “gray zone,” where survival is uncertain and the risk of serious disability is high, parents’ views should play a major role in the decision to provide life-prolonging treatment.
Amillia’s survival has stretched the boundaries of that “gray zone” but has not eliminated it. We do not yet know if her extremely premature birth will lead to any long-term disabilities, but, whether it does or not, other parents may reasonably decide that they don’t want to take that risk or put the public to the considerable expense of doing everything possible to ensure the survival of their tiny newborns. Peter Singer is the Ira W. DeCamp Professor of Bioethics at Princeton University. His books include Should the Baby Live? (coauthored with Helga Kuhse) and Rethinking Life and Death.
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OCTOBER 24-27 2013
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