It is right that society offers late abortions

Women who terminate their pregnancies following a diagnosis of fetal anomaly – whether that is a heart defect, a chromosomal disorder such as Down’s Syndrome, a condition such as cleft palate, or one of many other congenital anomalies – are subject to an intense amount of media and political interest, and moral judgementalism.

This is partly because these women are likely to have had ‘late’ abortions, in the second, even third, trimester of pregnancy. It is also because of the strong views and emotions surrounding disability, and societal disagreements over whether it is morally wrong to abort fetuses ‘just because’ they have been diagnosed with an anomaly.

What this feverish, often hysterical debate about the statistics, principles and prejudices generally misses is that abortion for fetal anomaly is an intensely personal decision, made by women and their partners in extraordinarily difficult circumstances that are unique to them.

For society, abortion is a moral, political and legal debate – for women needing an abortion, it is a personal decision with no wider ramifications. This is as true of ‘late’ abortions as it is of earlier ones, and it is as true of abortion carried out on grounds of fetal anomaly as it is of abortion carried out for other reasons. So, are we getting the balance right in the UK?

The Jepson case and its aftermath

The High Court recently ruled that the Department of Health should publish detailed statistics on the medical reasons why abortions are carried out after 24 weeks’ gestation. Such abortions are only legal in Britain in cases of serious fetal anomaly; a very small number take place each year. In 2009, there were a total of 2,085 abortions that took place under ‘Ground E’ (substantial risk of serious mental or physical handicap), and only 136 abortions took place after 24 weeks’ gestation.

When one considers that almost 200,000 abortions take place in England and Wales annually (189,100 in 2009), the most striking thing about figures for Ground E abortions is how small they are: only 1% of all abortions take place for fetal anomaly, and less than 0.1% of all abortions take place after 24 weeks.

Given how small the numbers are in general, when it comes to specific reasons cited for post-24 week abortions – such as cleft palate – the annual statistics are tiny indeed, often involving only one case. This caused a problem back in 2003, when the curate Joanna Jepson, who had been born with a malformation of the jaw, made a complaint about an abortion that sparked a police investigation into the case, and one of the doctors involved in the abortion was identified.

In 2005, after two years of media hype and legal speculation, West Mercia Crown Prosecution Service decided not to prosecute, but Jepson’s stunt had already caused significant damage. It had a chilling effect on doctors who authorise and perform late abortions, and it scared the Department of Health (DH) into stopping publication of the figures relating to specific medical conditions when there were fewer than 10 abortions, so that women and doctors would be at less risk of identification in the future.

The anti-abortion campaign ProLife Alliance (PLA) used the Freedom of Information Act to request the full statistics on abortions for 2003. When the DH refused, the Information Commissioner backed the PLA request, as did the Information Tribunal. The case led to the High Court, where the Department of Health tried – and failed – to get the Information Tribunal decision overturned.

In this particular legal skirmish, neither side has come out particularly well. By moving to suppress the data and blocking attempts to find it, the DH has come across as defensive, as though the doctors who have performed these late abortions have something to be ashamed of. This decision has also fuelled the self-righteousness of the anti-abortion lobby – which is particularly unfortunate, given the extent to which the Jepson case exposed the petty vindictiveness of anti-abortion tactics today.

By picking on one woman’s personal tragedy to make sweeping assertions about the immorality of abortion for fetal anomaly, anti-abortion campaigners have shown how little respect they have for women’s privacy, and how little regard they have for the painful decisions of those who terminate a pregnancy late in gestation following a diagnosis of fetal anomaly. Seeking to prosecute the doctors prepared to perform these abortions indicates that, for all their demands for openness about published data, crusaders such as Jepson prefer tactics of fear and intimidation to genuinely open, public debate.

Above all, focusing on statistics and legal grounds for abortion ignores the far more complex and important questions about women’s reasons for terminating pregnancies following a diagnosis of fetal anomaly – which do not sit so easily with the glib assertions made by anti-abortion campaigners.

Why do women have late abortions?

The high-profile nature of the Jepson case can be accounted for, in part, by the extent to which Jepson was able to present a single abortion, conducted after 24 weeks’ gestation following a diagnosis of cleft palate, as an example of women aborting pregnancies in the third trimester for trivial reasons. Jepson, as a photogenic young curate with a (corrected) jaw deformity, effectively argued that such abortions would amount to an attack on people with her kind of condition.

Yet this argument was wrong on a number of grounds. First, the reason why many abortions for fetal anomaly take place late in gestation – and some after the ‘time limit’ of 24 weeks – is because antenatal screening does not detect many anomalies until the routine diagnostic scan, which normally takes place at around 20 weeks’ gestation. (For more information on the timing of diagnostic tests, see the Antenatal Results and Choices website.)

If the scan reveals a problem, more scans and diagnostic tests are generally required. As well as waiting for the results of the tests and gaining specialist advice about the conditions they may have revealed, women and their partners need time to make their decision about whether to proceed with the pregnancy or terminate it.

In other words, it is precisely because women do not take the decision to have a post-20 week abortion lightly that such abortions end up taking place even later in pregnancy. The provision within the law to allow women the time to make this decision, by exempting cases of fetal anomaly from the ‘time limit’ that applies to other abortions, is right and humane – and certainly more so than pushing women suffering the shock of a diagnosis to make their decision quickly, before the 24 weeks is up.

The idea that cleft palate is a trivial reason for abortion is also completely wrong. Cleft palate is a condition of varying severity, which, as the National Health Service (NHS) explains, ‘can occur on their own (non-syndromic) or are sometimes part of a wider series of birth defects (syndromic)’.

A US website explains: ‘Clefts may occur alone or with other abnormalities that may be hidden or obvious. Up to 13 per cent of infants with cleft lip or palate have other birth defects. Some cases involve genetic syndromes that may result in specific problems for the infant and may have a high risk of affecting others in the family.’

In the Jepson case, we know that the fetus concerned had a bilateral cleft lip and cleft palate. We do not know – and have no business to know – whether the doctors involved were aware of any other likely anomalies, or anything about the woman’s circumstances that would affect her ability to care for a child with a disability. To presume, as the Jepson crusade did, that the fetus had a merely cosmetic defect that could be corrected with surgery betrays a shocking disregard for the other clinical, practical and emotional considerations that would have been involved in this case.

The correction of cleft lip and palate alone involves a number of surgical interventions, and the condition can be accompanied with difficulties related to feeding, hearing or speech. This is even without the appearance of other anomalies, for which cleft palate can be a marker. Some parents are able to commit to the care that this involves; others are not. By framing the abortion decision as one made by a woman and her doctors, the abortion law is designed to take account of the difficulty in knowing the severity of anomalies before birth, the variety of conditions, and the different circumstances and feelings of pregnant women. It is about giving women a choice, in circumstances where the choice that she wants – to have a healthy, able-bodied child – cannot be fulfilled.

This relates to another argument popularised by many of those who oppose abortion on grounds of fetal anomaly – that women making these decisions are making some sort of general, social statement about the condition in question. If Britain’s abortion law stated that women receiving a diagnosis of (say) spina bifida should abort the fetus with this condition, then this argument could have some traction. But the law expressly does not say that.

The abortion law contains no list of conditions that should warrant an abortion, nor any statement about what women should do in these circumstances; rather, the law provides for women making a decision, in discussion with her doctors, about the particular features of her specific case. Women with a diagnosis of fetal anomaly are enabled to have an abortion, if that is what they decide; on the other hand, they are supported through antenatal care and birth if they decide to continue the pregnancy. The cry of ‘eugenics’ in these circumstances deliberately confuses a personal decision with a social statement, demonising women for whom their own pregnancy represents, not any kind of political position, but their own would-be child.

It is also worth noting that not all of the pregnancies terminated on grounds of fetal anomaly would have resulted in a live birth – another myth popularised by the anti-abortion lobby. In Britain in 2009, there were about 4,100 stillbirths, where the baby is born ‘naturally’ with no signs of life after 24 weeks. Only about six per cent of these are thought to be linked with congenital abnormalities – but that is 246 babies, almost twice the number of those fetuses aborted after 24 weeks.

A very personal decision

Some argue that the problem of late abortions for ‘trivial’ reasons could be avoided by drawing up a distinct list of conditions for which it is acceptable to perform abortions after 24 weeks. This was one question examined by a Working Party of the Royal College of Obstetricians and Gynaecologists (RCOG) in 2010, which concluded that such a definitive list would be ‘unrealistic’, as ‘accurate diagnostic techniques are as yet unavailable’, and anyway ‘the consequences of abnormality are difficult to predict’.

This point is exactly right. Aside from the possibility of ever gaining society-wide agreement over which conditions are ‘serious enough’ to warrant an abortion, the decision about the consequences of having a disabled child can only be properly considered by the woman, her partner, and the doctors who treat her.

As stated above, a woman who finds herself in the heart-wrenching position of needing to make such a decision is not making any kind of grand principled statement on her views about disability, abortion, or what other people in that position should do: she is making a tough choice based on her particular life circumstances and the particular condition that might affect her fetus.

Of two women with an identical diagnosis, one might decide to continue the pregnancy and give birth to a baby that might die shortly after birth, or spend months in hospital, or suffer life-long chronic health problems, or be dependent on his or her parents for the rest of his or her life. The other might decide to have an abortion, at a stage of her pregnancy where people are aware that she was going to have a baby, and where she may have spent months happily preparing for the birth of a healthy child. Who is anyone, other than that woman and the people close to her, to make either of these decisions?

The availability of abortion after 24 weeks on grounds of fetal anomaly does not lead to large numbers of abortions. All it does is provide a crucial lifeline for those women who are given the devastating news that there is something seriously wrong with their pregnancy. Our society should be proud to offer this option to women who need it, and proud of the doctors who carry out these procedures in difficult circumstances. For picking on these women and their doctors in order to vent their ill-informed prejudices, Joanna Jepson and her fellow crusaders should be ashamed of themselves.

Jennie Bristow is editor of the BPAS publication Abortion Review, author of Standing Up To Supernanny and co-author of Licensed to Hug. (Buy these books from Amazon (UK) here and here.)