This article appears in the May 2003 edition of the Catholic Medical Quarterly
Children with Down's Syndrome:
A South African Perspective
Anthony Cole
In late January and early February, South Africa's summer, I was asked to undertake a short lecture tour on behalf of the Downs Children (Lejeune) Clinic. This had been arranged by Prolife South Africa and the Anna Fund in consultation with the Downs Syndrome Association of South Africa. I spoke at three Medical schools on topics largely chosen by my hosts. In addition I was able to speak to three meetings of parents and health workers mainly in special schools, where most children with Down's syndrome still receive their education.
At a meeting arranged in Johannesburg, some 70 parents and care workers came from Pretoria and Johannesburg. There the work of our clinic was outlined together with some information about the education, health provisions and arrangements for independent living and the employment of adults with Downs syndrome in the United Kingdom. The BBC video of the clinic was shown.
Surprise was expressed at the finding of our survey of 62 attendees with children under 10 years showing that 85% of them went to mainstream schools. But they had a surprise of their own. They introduced me to the "Swimming with Dolphins" initiative. The children are put in life jackets, and lowered over the side into the warm seas off the Eastern Cape. There dolphins come to investigate them out of curiosity and soon began to play with them, returning day after day to the delight of the children. Swimming comes easily to children with Downs syndrome and many countries are represented by Downs swimmers in the Special Olympics.
The meeting with the Witswatersrand Department of Community Paediatrics was a round table discussion on young adults with Downs syndrome and sexuality. This was a particularly delicate subject and there was an expectation that the visiting speaker would automatically endorse the routine sterilisation of women. At this point I slipped on my legal hat as a member of the Juvenile Bench, and discussed considerations about who is competent to make medical decisions. The so called, "Gillick competence", is beginning to replace proxy decision making, and there is an rebuttable presumption that adults are competent to make decisions concerning their own bodies.
There was some resistance to this suggestion by those with a more paternalistic view but The New South Africa since 1994 is emerging as a young and racially inclusive country that is conscious of human rights questions. On the subject of sex education, I was glad to have Dr Newbury with me, a doctor who together with his wife, had taken part in sex education and chastity programmes in African townships for a good many years. Their message, contrary to the governmental or official policy on teenage sexuality, had been surprisingly well received by young people. After a lively discussion our points were taken up by a number of the group, some of whom worked largely in the black townships. Dr Newbury`s comments actually gave them a chance to articulate views not normally expressed in academic or official circles.
This group of health workers were racially mixed and they regularly hold clinics devoted to children with Downs syndrome. They then took me to another part of the building where there was a unit for children who had been sexually abused, and we spent some time discussing medico legal matters in a South African context. They, like us, are working in child protection teams, have close links with the police and public prosecutors. There were concerns that public prosecutors were not always experienced or predictable. I got the impression that there had been many changes in the medico legal establishment. After a steep learning curve, we in the UK do know when the Crown Prosecution Services and Social Services are likely to initiate action. There are evidently huge problems with childhood sexual abuse, especially in the townships and squatter camps which are springing up everywhere.
The best attended lecture was at the Nelson Mandela School of Medicine at the University of Natal and was given in front of three professors and over a hundred members of the medical school. Prolife South Africa had rather provocatively entitled it, "Anti natal and post natal care of Downs syndrome". The University gynaecology department is, in fact, at the forefront of the ante natal screening and abortion programme and advisers to the African National Congress, the ruling party in government. I was politely introduced by the head of paediatrics who read out my very explicitly Catholic C V , which was not perhaps helpful. There were two professors of gynaecology in the audience.
In a situation like this I try to let the children speak for themselves, as it were. One or two slides of them and their achievements says more than I could. There are also some robust statements from parents including some helpful position statements from parent groups such as that of the Down Syndrome Association of Queensland;
- "People with Down syndrome are valuable human beings who deserve respect and equality. All people with Down syndrome have the potential to live full and rewarding lives and make a positive contribution to our community."
- "Down syndrome is not, in itself, a reason for termination. We recognise the valid role for prenatal genetic testing, but the primary role of prenatal genetic 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 fear of disability".
I usually follow this with some experience of my own with the counselling given before the biochemical screening test which is usually no more than a pamphlet. In my view counselling should be explicit and given by a person with direct experience of Down syndrome, or arrangements made for mothers to have access to a family with a Downs child .Furthermore many parents seem unaware that there is an appreciable failure rate with the biochemical screening test.
There were two hostile questions but they were offset by a junior doctor who had been involved in a late abortion and the ethics and even "morality" ( the rare "M" word) came up and I was even able to mention the "right to life". South African professionals are much more respectful and silent in the presence of senior academics, but the general reception of this lecture was warm.
South Africa has probably the most liberal abortion laws in the world with abortion on demand enshrined in the constitution. There is pressure on junior doctors who have a conscientious objection. A friend at the back reported favourable comments from members of the audience. My own view is that Downs persons and their parents are the best advocates for the value of their own lives, and one slide of an athlete with Downs syndrome, is worth a thousand words.
In Cape Town, after another two invigorating meetings with parents and children, the final formal lecture was delivered at the Stellenbosch Medical School where we were received in the paediatric department by about 60 members of the medical staff. The professor of paediatrics introduced me and although the same rather provocative title had been used, I felt that the audience was sympathetic. It was good to explore with them some of the current research, such as the Great Ormond Street Children's Hospital multi centre trial of folic acid and vitamin C currently under way in London and the Midlands. Also it was an opportunity to report on the Lejeune clinic's workshop of 2002, where we learnt of the new knowledge arising from the sequencing of chromosome 21 and the creation of a trysomic 21 mouse now being used in fundamental neurological research. After the last lecture it was straight to the airport and farewell to this sunny and beautiful country.
South Africa is as big as Europe with the population of England. We had also glimpsed the problems associated with HIV/Aids when we were taken to Baragwanath Hospital in Soweto. There nearly half the children in the paediatric ward were HIV positive, and one in six of the entire population of the country is infected. We did not have time to see, but heard from the nuns at Nazareth House in Cape Town, of their work with orphaned babies who are HIV positive. We encountered many Aids orphans on the streets of Durban begging at the traffic lights. In rural Zululand, 75% of the men are infected, and the newspapers were reporting fears for the water table, with so many bodies being buried in shallow graves. Our South African friends explained that virtually all deaths from HIV/Aids were complicated by tuberculosis, which is undergoing a spectacular resurgence.
The abiding memory will always be the spirit, and determination of parents to overcome all obstacles for their children with Downs syndrome. In this they are at one with the parents we have met everywhere from Britain to India, Australia and South Africa. The first and main problem being their struggle for the social acceptance of their children.
Dr Anthony Cole is a Consultant Paediatrician
at the Hospital of Saint John and Saint Elizabeth,
London.