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Q&A: Abortions for fetal abnormality

This Q&A page provides the O&G perspective on abortions for fetal abnormality and syndromatic conditions indicated by cleft lip and/or palate. It was published by the RCOG in July 2008 to accompany the passage of the Human Fertilisation and Embryology Bill through Parliament.

What is the law regarding abortions for fetal abnormality?

Currently, the Abortion Act 1967 states that abortions on grounds of fetal abnormality are permitted provided “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.”

How are these abnormalities detected?

Antenatal recognition of fetal malformations relies on accurate detection from screening programmes using either maternal serum screening, routine ultrasound scanning or a combination of both.

The early pregnancy scan (between 10 and 14 weeks) is undertaken to determine the gestational age of the fetus, if the mother is expecting a multiple birth and the risk of Down syndrome. Structural abnormalities are picked up during the second ultrasound scan which occurs between 18 and 20 weeks. Detection rates of significant anomalies at this gestation are around 50%.1,2 If an abnormality is suspected, the woman will be invited to have a third scan at 22 weeks to confirm if the fetus has a malformation. Some fetal malformations become clearer after 24 weeks. Examples of these are the Hypoplastic Left Heart Syndrome and cerebral ventriculomegaly. As noted in a Europe-wide study, the antenatal detection rate was highest for anencephalus.3

In reference to abortion for fetal abnormality, is it desirable to define specifically what constitutes a serious abnormality?

The RCOG has stated that a strict definition is impractical because we do not have sufficiently advanced diagnostic techniques to detect malformations accurately all of the time and it is not always possible to predict the ‘seriousness’ of the outcome (in terms of the long-term physical, intellectual or social disability on the child and the effects on the family). The RCOG believes that the interpretation of ‘serious abnormality’ should be based upon individual discussion agreed between the parents and the mother’s doctor.

Based on the recommendation by the Science and Technology Committee Inquiry ‘Scientific Developments Relating to the Abortion Act 1967’, the RCOG was recently commissioned by the Department of Health to review and update its guideline Termination of Pregnancy for Fetal Abnormality in England, Wales and Scotland (1996). Work on this will commence shortly.

There have been calls for cleft lip and/or cleft palate to be excluded from being classified as a ‘serious handicap’. What is the RCOG’s view?

The medical view on observed instances of cleft lip and/or cleft palate is that in some cases, these are symptoms of more serious conditions. For this reason, it is important that doctors provide a good assessment and a decision is made based on the consultation with the doctor.

The general prevalence of cleft lip and/or palate is around 1.5 per 1000 live births.4 According to the latest statistics, 6.6 out of 10, 000 live births and stillbirths in register areas in England and Wales provided notifications of cleft lip and/or palate.5

Research shows that children with cleft lip and palate often have associated malformations. Around 30% of all children born with cleft palate have been found to have an associated malformation, and similar numbers have also been observed for those with cleft lip and/or cleft palate.

A study conducted in Pakistan revealed that the most common malformation for such children was congenital heart disease.6 A study in Switzerland noted that two thirds of cleft lip and/or palate patients with minor anomalies also had major malformations, drawing the link between the close interplay between craniofacial and brain development.7 Other common malformations recorded in prospective studies include those in the central nervous system, the skeletal system, the urogenitial and cardiovascular systems.8 In some cases, malformations are multiple9,10 and frequently associated with mental retardation or chromosomal anomalies.11

The issue of fetal abnormality is a sensitive one since there are differing interpretations of what constitutes a serious handicap. The evidence outlined above show that cleft lip and/or palate are, in some cases, indicators of serious congenital malformations.

It is important for parents to be provided with good information on the future quality of life for their babies and family. Further support should be provided to parents and there are several charities providing good networks and resources such as Antenatal Results and Choices (ARC), the Association for Spina Bifida and Hydrocephalus (ASBAH), the Cleft Lip and Palate Association (CLAPA) and STEPS.

References

1. Boyd PA, Chamberlain P, Hicks NR. 6-year experience of prenatal diagnosis in an unselected population in Oxford, UK. Lancet 1998;352:1577–81.

2. Richmond S, Atkins J. A population-based study of the prenatal diagnosis of congenital malformations over 16 years. BJOG 2005;112:1349–57.

3. Garne E, et al. Prenatal diagnosis of severe structural congenital malformations in Europe. Ultrasound in Obstettics & Gynaecology 2005;25:6–11.

4. Gregg TA, Leonard AG, Hayden C, Howard KE, Coyle CF. Birth prevalence of cleft lip and palate in Northern Ireland (1981 to 2000). Cleft Palate-Craniofacial Journal 2008;45:141–7.

5. Congenital anomaly notifications 2006, England and Wales. Health Statistics Quarterly Spring 2008;37:63–6.

6. Shafi T, Khan MR, Atiq M. Congenital heart disease and associated malformations in children with cleft lip and palate in Pakistan. British Journal of Plastic Surgery 2003;56:106–9.

7. Mueller AA, Sader R, Honigmann K, Zeilhofer HF, Schwenzer-Zimmerer K. Central nervous malformations in presence of clefts reflect developmental interplay. International Journal of Oral & Maxillofacial Surgery 2007;36:289–95.

8. Stoll C, Alembik Y, Dott B, Roth MP. Associated malformations in cases with oral clefts. Cleft Palate-Craniofacial Journal 2000;37:41–7.

9. Harville EW, Wilcox AJ, Lie RT, Abyholm F, Vindenes H. Epidemiology of cleft palate alone and cleft palate with accompanying defects. European Journal of Epidemiology 2007;22:389–95.

10. Vallino-Napoli LD, Riley MM, Halliday JL. An epidemiologic study of orofacial clefts with other birth defects in Victoria, Australia. Cleft Palate-Craniofacial Journal 2006;43:571–6.

11. Milerad J, Larson O, Hagberg C, Ideberg M. Associated malformations in infants with cleft lip and palate: a prospective, population-based study. Pediatrics 1997;100:180–6.

Contact

For more information, please email policy@rcog.org.uk.

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