Select Committee on Science and Technology Written Evidence

Memorandum 3

Submission from the Lejeune Clinic for Children with Down Syndrome

A response to the Parliamentary Science and Technology Committee reviewing the Abortion Act 1997

  With an incidence of 1:700 live births Down's Syndrome is the commonest chromosomal abnormality in man. It was first described in 1866 by John Langdon Down and the trisomy of chromosome 21 resulting in genetic imbalance was discovered by Lejeune and Turpin in 1959. In the regular form which occurs in 94% of cases the triplication of chromosome 21 is caused by a process of non-disjunction which is related to maternal age. The risk is 1 in 1500 mothers aged 15-29 years but increases to 1 in 100 mothers aged 40-47 years.


  The Lejeune clinic for Children with Down's Syndrome has been in existence for 14 years and is based at the Hospital of St John and St Elizabeth in London. The clinic carries out medical and developmental assessments and addresses a number of practical problems. It has seen over 200 children with Down's Syndrome and has heard a great deal from parents of their experience of pregnancy and the subsequent difficulties with their children's health and education. Moreover, it provides parents with an opportunity to raise their own questions and relate their own experiences. It is the only independent and charitable clinic of its type in the country. It is staffed by senior paediatricians, speech and language therapists and occupational therapists who also work in the NHS. The paediatricians are all members of the Down's Syndrome Medical Interest Group which is the leading authority in the country on Down's Syndrome in children. The clinic staff communicate directly with the primary and secondary care teams already involved in the child's care.


  This is based on a whole hearted acceptance of the child and his or her family and a commitment to helping the child to reach his full potential. Not all the parents attending had decided against an abortion but in many cases screening tests had failed. The alpha foeto-protein (AFP) screening test and index performed on blood in early pregnancy has a significant false negative result. The offer of later amniocentesis and chromosome analysis at or about 20 weeks is dependent on this index. Some women decline the test but most take it in a routine fashion whether knowlingly or not. It is not generally known that the main blood screening test in early pregnancy is falsely negative in up to 30% of cases. Ultra sound examination, which can be diagnostic, often fails and only the chromosome analysis after amniocentesis is nearly 100% reliable, but it can cause miscarriage in a small percentage of cases and is only available from 20 weeks by which time the mother can feel her baby moving. Other chromosome tests are feasible in early pregnancy but are not generally available. As a result some 450 children are born each year in England and Wales with Down Syndrome.

2001347 abortions 381 births
2002372 abortions358 births
2003401 abortions404 births
2004491 abortions475 births
2005429 abortions453 births

"Births" includes both live and still births. Given the known prevalence which is the same world wide this means that some pregnancies with a child with Down Syndrome are being missed. These may well be amongst the still born.

These are ONS figures given in Parliament 27/7/07 in response to a question.


  Women who decline ante natal test often have difficult experiences. They may be motivated by a moral objection to abortion or it may be a very "precious pregnancy", being in some cases the only chance that a woman has to have a child. It is our experience that even if a woman would have opted for abortion, that once the baby is born there is close bonding and often a protective response. All of these mothers, without exception, want the best for their child. In my 30 years as a consultant paediatrician I have never known a child with Down's Syndrome to be abandoned in a British hospital.

  It is hard to summarise what we have heard but I think almost all mothers of children with Down Syndrome would subscribe to the sentiments expressed below in the "Down Syndrome Association of Queensland: Position Statement on Pregnancy Testing".

  People with down Syndrome are valuable human beings who deserve respect and equality. All people with Down Syndrome have the potential to lead full and rewarding lives and make an important contribution to our community.

  Down Syndrome is not a reason for termination. We recognise a valid role for prenatal genetic testing, but the primary goal of prenatal testing should not be to reduce the birth prevalence of Down Syndrome. Prenatal testing should not be offered or promoted using outdated information, negative stereotypes, prejudicial images or offensive terminology which have the potential to stigmatise people with Down Syndrome and increase the fear of disability.

  Prenatal testing must be voluntary. The trend towards routine testing does not remove the obligation to obtain informed consent. Pregnant women and their partners must be advised that they can refuse testing. They must not be subject to pressure to undertake a particular test or terminate a pregnancy or make a decision in undue haste.

  The decision to continue or terminate pregnancy belongs to the individual woman or couple alone. Counselling and support should be available regardless of the individual choice.

  Couples who continue pregnancies following positive diagnosis should not be denied access to services or benefits.

  The British Down Syndrome Association have long held the view that an uncomplicated Down Syndrome is not sufficient grounds for abortion.

  Anecdotal evidence from mothers attending the clinic points to breeches of virtually all of these recommendations. Women report that they were repeatedly asked if they want a termination each time they attended antenatal clinic, whether or not they had already communicated their decision to proceed with the pregnancy. This may, in part, be due to them seeing a different midwife each time but their decision not being passed on. Some women felt that they were expected to have an abortion and very few were offered accurate or positive information on the real expectations of life with a child with Down Syndrome.Indeed many of them had had to carry out their own research on the internet. One commented "I only ever heard anything positive when I contacted a self help parent group".

  There were a few anecdotes which caused great concern. The worst was of a woman who was asked if she would have an amniocentesis just before the baby was due in order to make the diagnosis so that the medical team would know "whether to resuscitate the baby or not". The mother in question was a mature single woman who felt that this was the lowest point in her pregnancy. She was a solicitor, but did not want to complain formally and the experience remained with her for years. Unwillingness to complain is a feature of women in this situation and they are particularly vulnerable.

  It cannot be emphasised too strongly that, unlike other situations in which abortion may be carried out, these are nearly all wanted babies and the emotional problems arising from their abortion are consequently greater.Futhermore, late abortions, including in some cases lethal intrauterine injections, are particularly traumatic. These women are at particular risk of post traumatic stress disorder.


  (a)  Women need accurate information which goes beyond medical facts and many would welcome the possibility of a discussion with parents who are already raising such a child. It would be good medical practice to encourage this and our experience shows that suitable volunteers can be recruited to such a scheme. Many mothers have had to do their own internet search to find information and find that this, or self help groups are their sole source of encouragement.

  (b)  When a decision has been made to proceed with the pregnancy it should be clearly documented and placed prominently in the records so that the question is not repeatedly raised and women do not feel unduly pressurised to change their decision.

  (c)  Staff dealing with women in antenatal clinics need to be better informed about Down Syndrome.


  Society's attitude towards people with Down's Syndrome is changing and they are no longer being deprived of family life and especially through "inclusive education" are becoming more accepted in society in their own right. Many achieve semi-independence and some are totally independent earning their own living, driving cars etc. Many gain employment in supermarkets stacking shelves and many in kitchen work.

  It is virtually unknown for Down Syndrome people to be in conflict with the law. Questioning Magistrates with over 50 years experience between them, none had seen a Down Syndrome person in court. This says something about their nature and general character.


  1.  Most children with Down's Syndrome are happy.

  2.  Most are sociable and enjoy friendships.

  3.  Most are well integrated into mainstream play groups though some also attend pre school groups for children with special needs.

  4.  80% attend mainstream primary school either full or part time.

  5.  Virtually all are mobile.

  6.  All save the autistic communicate by speech or signing or a combination of both. Some have near normal communication skills.

  7.  Nearly all integrate in a loving fashion into their families.

  8.  Challenging behaviour can occur and stubbornness and frustration especially over lack of communication but this can be helped.

  9.  They may suffer from a variety of medical problems including congenital heart disease (50%), variable deafness, thyroid deficiency (30%) at some point in childhood, visual defects and other health problems including responsive leukaemia. Virtually all these problems are amenable to treatment which is often very effective, for example death in late childhood from uncorrectable heart defects is now virtually unknown. A minority have a childhood marred by chronic illnesses.

  10.  Average life expectancy is about 56 years and is rising

  11.  The range of ability of children with Down's Syndrome is as wide as the range in typically developing children. The top of the Down Syndrome range overlaps the lower end of the range of typically developing children.[1] Children with Down's Syndrome learn better if visually oriented methods are used but they can usually cope in mainstream primary school and many in mainstream secondary school with the help of teaching assistants.

  12.  People with Down Syndrome often develop Alzheimer's type dementia at about 20 years earlier than the normal population and by the age of 70 years 100% of people with Down Syndrome have developed it. This compares with 40% of the average population of over 80 year olds. Much research is now being directed towards this using a Down's mouse model. The 21 chromosome has now been fully sequenced (decoded) and the   role of amaloid related genes is the subject of great interest. The clear identification of animal and human Downs means they can be the focus of research into Alzheimer's disease generally. At present this remains the main long term medical problem for adults with Down's syndrome.


  1.  In the light of what we have learnt, it is hard to see how the majority of children with Down Syndrome fulfil the criteria for abortion on the ground of serious untreatable disability.

  2.  Only a small number of children come into this category though it is not possible to predict them before birth or indeed in the first few years. The majority suffer from moderate learning difficulties and treatable physical health problems.

  3.  In the light of this we would like the committee to redefine "serious disability" in the context of Abortion law.

  4.  We would like the question of informed consent and accurate counselling to be taken more seriously with the possibility of access to families with children with Down Syndrome being provided for pregnant women. We would like to see a suitable form or stamp in the records to indicate if women have decided to proceed with a pregnancy to prevent the subject being repeatedly raised. This could, however, be subject to more diagnostic information becoming available later.

  5.  The question of consent and non consent to screening or diagnostic tests needs to be clarified if women are not to feel they are being pressurised into making a particular decision, namely, that of proceeding to an abortion. Could this not be the subject of regular patient audit?

  6.  We would particularly ask the committee to consider what is required to make health professionals better informed of the true nature and outcomes for children with Down Syndrome. Is there a role for paediatricians or paediatric nurses taking part in joint training programmes?

August 2007

1   Patricia Henshall. The Development of children with Down's Syndrome BACCH News June 2007 Back

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