I thank the committee for inviting me today and allowing me to contribute to this pivotal decision that Ireland as a nation is about to address concerning women's rights. I am a consultant in foetal medicine practising in England at Birmingham Women’s and Children’s Hospital. My special interests are in the prenatal diagnosis and management of foetal disease, the management of women with congenital heart disease and the management of multiple pregnancies. Within my management of foetal disease, is included the diagnosis of differences in the foetus by ultrasound scan, preforming invasive prenatal diagnostic techniques such as amniocentesis and chorionic villus sampling, CVS, performing invasive prenatal sampling such as drainage of fluid collections within a foetus which may be life threatening and also, where appropriate, counselling with regards to termination of pregnancy.
The unit where I work, Birmingham Women’s and Children’s Hospital is in the West Midlands and delivers approximately 8,000 women each year.
The West Midlands has a population of 5.5 million and my unit is the regional foetal medicine unit. We perform over 7,000 ultrasound scans, 410 invasive procedures checking the chromosomes of babies, 48 intrauterine blood transfusions and around 40 fetoscopic laser ablations. We also perform a number of other invasive tests, included selective reductions which I may mention later. The unit is a supraregional referral centre for the management of feto-fetal transfusion syndrome and its management by fetoscopic laser ablation.
I have had an opportunity to present to the Citizens' Assembly and I am happy to discuss with the committee the care pathways of the termination of pregnancy under clause E in England, the experience of some Irish women that we have come into contact using these services and some suggestions regarding the use of the term fatal or lethal abnormality. I do not intend in my introduction to cover all of the aspects that I covered in my paper. Having said that, I am happy to expand on that with questioning.
I am sure that all of the members are aware that 40 years ago the Westminster Parliament passed a Private Members' Bill ensuring that doctors who performed abortions, under certain conditions, would not be performing an unlawful act. This law has never been adopted in Northern Ireland. The law was subsequently amended by the Human Fertilisation and Embryology Act 1990. It is still an offence to perform an abortion unless two independent medical practitioners are of the opinion, formed in good faith, which is an important phrase, that the case meets at least one of the required criteria.
I hope to speak to the committee about clause E which states: "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". The British Parliament has never sought to define what is meant by the words "substantial" or "serious". The matter has been left to be decided in good faith by the medical profession.
It is important to note that clause E of the termination Act is not gestation dependant. According to the Office for National Statistics in the UK, as many as 190,000 abortions were performed in England and Wales in 2016. Of these, however, only 3,200 were performed under clause E. As in the Republic of Ireland, the main foetal anomaly ultrasound scan is performed at approximately 20 weeks gestation in England and Wales. Despite this only 500 of the 3,200 abortions, that I have mentioned, were performed after 22 weeks of pregnancy. Also, there were 140 selective terminations of pregnancy, involving multiple pregnancies and over three quarters of these were under clause E. These can be life-saving procedures for the co-twin and I have described one such case in the case studies that I have submitted. Over half of these terminations of pregnancy are performed for chromosomal or central nervous system differences in the foetus.
In 2016, 3,265 Irish women had a termination of pregnancy in England and Wales. Of these 140 had a termination under clause E of the Act. Again, the foetal indications are predominantly chromosomal or central nervous system differences.
As explained in previous sessions that I have read, detailed anomaly scans of foetuses are performed at approximately 20 weeks gestation, though the availability appears to be much less in Ireland than it is in the UK. In England and Wales if a difference is found in a foetus, a pathway is followed that may include a second local scan to confirm the diagnosis by an obstetrician with a special interest in fetal medicine. The second scan should be performed within five working days. In some cases local obstetricians will be able to fully counsel women on the outlook for their baby. In other cases, referral to a recognised foetal medicine unit will take place.
We attempt to see women within three working days at my foetal medicine unit and that is the standard that has been set nationally. When we see these women we scan them, then sit them in a more homely room and counsel them and their families in the presence of a midwife. All options are discussed with the women including, where appropriate, intrauterine foetal therapy and the termination of pregnancy. On leaving the woman is given a detailed report that is read through with her prior to her leaving and contact numbers for the fetal medicine centre are given. A sub-group of women may need additional investigations, both invasive and non-invasive, and some will require counselling by a specialist in another field. It is important to acknowledge that women will need differing amounts of time to come to terms with this information and make their decisions.
If the woman opts to terminate her pregnancy this will be arranged at her local unit where she can get additional family support. Depending on the gestational age, both surgical and medical termination techniques are discussed with these women. As there is an increasing chance of foetuses being born alive after 22 weeks of gestation, the Royal College of Obstetricians and Gynaecologists recommends that the foetal heart is stopped by performing feticide prior to the termination of pregnancy for cases after 22 weeks of gestation unless the abnormality is not compatible with life.
If the woman opts for a medical termination of pregnancy then a tablet, an anti-progestagen, is administered and admission arranged for induction of labour with prostaglandins about 36 hours later. Around 95% of women will deliver on the day they receive their prostaglandins. A small proportion will require a second course. An infection, haemorrhage and retained placental tissue are the main short-term complications of the procedure. For the Irish women that we see in our unit, we complete the termination process in Birmingham but once discharged the women return to Ireland. While in Birmingham, they often express the difficulties that they have with regard to the limited number of people who they can discuss this scenario with and gain support from.
Finally, I would like to mention the concept of fatal or lethal conditions. If the law in Ireland is to change and the termination of pregnancy is allowed for foetal differences, I would urge the committee not to make a list as with the ever changing progress in medicine conditions would need to be added and removed from the list on a regular basis. I would also strongly advise against being prescriptive and using the term lethal or fatal abnormality. The problem is there is no agreed definition as to what lethal means. Does it mean that all foetuses with the condition will die before birth? Does it mean that all foetuses will die either before birth or in the neonatal period despite supportive therapy? Does it mean that a baby will usually dies in one of these two periods? Finally, has it just been noted that there is an association between the condition and death?
For the information of members, I included two tables from a publication by Wilkinson et al in the paper that I submitted to the committee. The first of these lists the commonest conditions named in the medical literature that is said to be lethal foetal malformations. The same paper quotes the longest age of survival for these conditions, and since this publication survival until 13 months has been reported in a case of renal agenesis. Therefore, counselling women whose pregnancies are complicated by a foetus with a severe abnormality is not a binary state of affairs but rather a complex discussion that requires a description of risk and probability.
Last year, over 3,000 women travelled from Ireland to England to terminate their pregnancies. Approximately 140 of them had a termination because their foetus was thought to have "a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped”. The care pathway that is followed by Irish women is sub-optimal, removes them from their support network and is only available to a sub-set of women who are able to initiative their contacts with units in England.
Finally, if legislation is brought in for foetal conditions, particular care must be taken when using the phrase "lethal or fatal".