4 October 2011
Clinical Update: Termination of Pregnancy for Fetal Anomaly
By Jane Fisher, Director of Antenatal Results and Choices (ARC).
Q) What is meant by termination of pregnancy for fetal anomaly?
Termination of pregnancy for fetal anomaly (sometimes shortened to TOPFA) is used to refer to abortions that are classified under Ground E of the Abortion Act 1967 (as amended in 1990). These are abortions that are carried out when two clinicians are satisfied that: ‘There is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped’.
In England, Scotland and Wales, terminations under Ground E are legal beyond the ‘time limit’ of 24 weeks’ gestation that applies to most abortions. According to Department of Health statistics, 2,290 abortions were performed under Ground E, in 2010. This represents about just over 1% of the total number of abortions carried out in England and Wales. (1) A total of 147 abortions were carried out over 24 weeks’ gestation; less than 0.1% of all abortions.
Abortions in these circumstances are usually referred to as ‘terminations’ by healthcare professionals and the women involved. This is perhaps an attempt to categorise them as being performed for medical reasons and to differentiate them from the ending of unwanted pregnancies.
Q) At what gestation does TOPFA generally take place?
Although the law allows for TOPFA beyond 24 weeks, the vast majority (over 96%) happen before this. The timing tends to correspond with the scheduling of antenatal screening and diagnostic tests. There are two types of diagnostic tests: ultrasound scans, and the invasive diagnostic tests for chromosomal and some genetic conditions - chorionic villus sampling (CVS) and amniocentesis. There is an optional universal screening programme for Down’s syndrome in England, Scotland and Wales.
In England, most women are offered a first-trimester combined screening test. (2) This is carried out between 11 and 13 weeks’ gestation and involves an ultrasound scan and maternal blood test. More common in Scotland and Wales is a maternal blood test performed at around 16 weeks. This test is also provided to those women who book into antenatal care too late for the earlier screening. Even if a woman chooses not to have Down’s syndrome screening, she will still have a scan between 10 and 12 weeks to date the pregnancy. Major structural problems can be seen at this early scan.
The provision of earlier screening in England was partly driven by the principle that by having an earlier result, women could access the earlier diagnostic test (CVS) which is carried out between 11 and 14 weeks. This could then allow for earlier reassurance, or if, after the confirmed diagnosis of an anomaly, a woman decides to end the pregnancy, there would be a choice between surgical and medical management of the termination process.
In reality, due to the lack of surgical expertise in NHS settings, most women will be offered a medical termination if they receive a diagnosis beyond 13 weeks. Currently, few are told they may be able to access a surgical procedure through an independent provider. Women who have a blood test to screen for Down’s syndrome between 16 and 20 weeks’ gestation and whose result leads to the offer of a
diagnostic test will have the option of an amniocentesis. The major scan to check for structural problems in the developing fetus is performed between 18+0 and 20+6 weeks gestation. (3) Problems seen at this scan will usually require further investigations.
A proportion of TOPFAs are therefore performed after 20 weeks’ gestation. Within the NHS these are always medically managed, with feticide recommended at gestations beyond 21 weeks 6 days. The small number (147 in 2010) of TOPFAs performed after 24 weeks are usually due to a condition that is detected later in the pregnancy. For example, a woman may present at 28 weeks for a scan to check placental
position and a brain abnormality is detected. Or in some cases women may have been monitoring the progression of a condition diagnosed at the mid-pregnancy scan and then find the prognosis deteriorate in the third trimester.
Q) What are the reasons why women would choose a particular method of termination?
There is no research evidence that the method used to end a pregnancy after a prenatal diagnosis will complicate the post-procedure emotional recovery. (4) From ARC’s extensive experience in supporting women and couples post TOPFA, the key factor seems to be that they are enabled to have it managed in the way they can best cope with at the time. They will require clear information on their care options and should be given the time they need to decide how to proceed. There will be some instances when a detailed post-mortem is recommended and so medical management will be necessary.
It can be difficult for women to contemplate going through labour and delivery to end a wanted pregnancy, but after the initial shock at the idea, some will decide that this method feels more ‘natural’ and a more tangible way of managing the loss. There will be an intact fetus and this gives women and their partners the choice to see and hold their baby if this is what they want; but there is no clear evidence to suggest that seeing and holding the baby will lead to less complicated grieving. Other women decide that the surgical option under general anaesthetic will be easier for them to cope with than a medically-managed delivery.
There are no particular clinical skills required by TOPFA.
Q) What are the other considerations in dealing with women presenting for TOPFA?
Most women who present for TOPFA will be grieving the ‘healthy baby’ they have already lost and distressed that they are ending a wanted pregnancy. Some will be very sensitive to the fact that they may come up against women using abortion services who are in different circumstances with pregnancies that are unwanted. They may feel the need to make it clear to staff that theirs is a wanted pregnancy and that they are only ending it because of the severity of the condition affecting the fetus.
Women facing TOPFA can feel very vulnerable. Although they know intellectually that they are making the right decision in their situation, emotionally there can be painful conflicting feelings. Some will fear
judgement from others for ending a pregnancy because a life-limiting or disabling condition has been diagnosed (this can partly be due to them judging themselves harshly for deciding on termination). Because distress levels can be high, many women will be keen to have their partner with them for support for as much of their time in clinic as possible if this is practicable.
Women presenting for TOPFA will often conceptualise their pregnancy as a ‘baby’ rather than a fetus and may need reassurance from clinical staff that the procedure will not cause the fetus pain. Some may want to see the screen when having a scan pre-procedure, while others may wish to distance themselves from this pregnancy. There will be women who rapidly want to look ahead to the next pregnancy, which may mean they wish to opt out of discussions about contraception. It can be useful for women to be given contact details of ARC in case they wish to seek emotional support after the procedure as they can be taken aback by the grief reaction they experience once they return home.
As will all women seeking abortions, the key to the sensitive management of TOPFA is to not make assumptions, take the cue from an individual woman and try as far as possible to accommodate her needs.
Jane Fisher is Director of Antenatal Results and Choices (ARC). For more information about ARC’s services go to www.arc-uk.org or call 02076310280. For more information on TOPFA see the RCOG’s 2010 Working Party Report Termination of Pregnancy for Fetal Abnormality.
This article appears in the print edition of Abortion Review, Number 35, Summer 2011. Download a .pdf of this issue of Abortion Review here.
Abortion Review topic archive: Clinical Update Q&A
(1) Department of Health. Abortion Statistics, England and Wales: 2010. Statistical Bulletin 2011/1.London: DH 2011
(2) NHS Screening Programmes: NHS Fetal Anomaly Screening Programme
(3) NHS Screening Programmes: NHS Fetal Anomaly Screening Programme
(4) Statham H. ‘Prenatal diagnosis of fetal abnormality: the decision to terminate the pregnancy and the psychological consequences.’ Fetal and Maternal Medicine Review 2002;13:213–47.