Siamese Survivors
Episode 1:

Aims

To relate the story of Hassan and Hussein Salee, two 16-year-old boys who had been born Siamese twins.
Although they have been separated physically, mentally and emotionally they behave as one person. Can they ever lead independent lives?
To explore the difficulties in leading separate lives and establishing relationships for the twins.

Outline

00.00–01.18 Introducing Hassan and Hussein Salee, Siamese twins who survived and operation to separate them and Opening Titles.

01.19–02.57 Background of the twins. They came to England from Sudan in 1986 as Siamese twins for an operation to separate them that could not be performed in their own country. They are now 16 years old.

02.58–04.33 Meeting Professor Lewis Spitz from St Ormond Street Children's Hospital who explained the risks associated with performing the operation. The parents also described the dilemma they faced.

04.34–07.43 29 April 1987 – the day of the operation at St Ormond Street Hospital. A description of the operation involving eight different surgeons and the post-operative trauma.

07.44–12.49 The fight for the survival of the twins as they were growing up – the physical, mental and emotional stresses on them and their family.

12.50–16.58 Problems for the boys as 16-year-old teenagers – the questions and the challenges they will have to face in living separate lives and establishing relationships, especially with girls.

16.59–19.03 The twins meet Professor Spitz for the last time at St Ormond Street hospital.

19.04–25.24 The boys at home – their limitations because of their medical problems, their race and their religion. Preparing for their birthday party and Hassan invites a girl.

25.25–29.35 Although physically separated Hassan and Hussein are emotionally one person. The impact of their relationship on their brothers and sisters. How the twins relieve their stresses and frustrations.

29.36–37.58 Going away from home on a school trip to Exmoor – an emotionally stressful experience. Trying to assert their independence and the problems of leading separate lives.

37.59–41.33 Building an extension to the twins' home with separate rooms for each of them because is seems inconceivable that they can live apart.

41.34–47.37 Hassan and Hussein's seventeenth birthday party, but, unfortunately, the girl that Hassan invited is unable to come. However, he and his brother are determined to enjoy the day.

Will they ever be able to live separate lives?

47.38–48.01 Credits

Curriculum Relevance

Science – Life Processes and Living things – Reproduction – the human reproductive system; how the foetus develops in the uterus

PSHE – pupils gain greater knowledge and understanding of spiritual, moral, social and cultural issues through increased moral reasoning, clarifying their opinions and attitudes in discussions with their peers and informed adults and considering the consequences of their decisions.

Background

'Siamese twins' (or conjoined twins) are twins who are physically joined together at birth. The name Siamese came from the first pair whose medical history was documented – Chang and Eng Bunker (1811–74) – who were born in Siam.
The incidence of conjoined twins is very rare, approximately one in every 40,000 pregnancies. Most die at birth and there are only five pairs of conjoined twins who are teenagers or adults living in the world today. It is estimated that 70% of conjoined twins are female.
The operation to separate Siamese twins is extremely complicated and the risks are very high. However, there are believed to be fifty complete living pairs of separated twins and more single twins who survived the operation.
There are six main ways in which the babies are joined – at the chest, back-to-back, the lower part of the body, the upper part of the body, the top of the head or skull, one body with two separate heads. Some of them may share internal organs such as a heart, brain, or liver. In some cases it is impossible to separate the twins and in others, separation means that only one twin can survive.
There are two types of twins, identical and non-identical. Identical twins (or Monozygotic twins) are from a single (mono) egg (zygote). Monozygotic twins form when a single fertilized egg splits into two embryos. Because the twins share the same DNA set, they tend to have similar features. Conjoined twins are always the same sex and are always identical.
Hassan and Hussein were fused from the chest to the head in a complex way and the chances of both of them surviving the operation to separate them were slim. The operation involved the removal of a mutual third leg. Their livers were joined together and their kidneys needed re-routing. However, the fact that they had separate hearts and lungs saved them. The operation lasted 16 hours and involved eight surgeons. They are now nearly 17 years old but they will need further operations because they intestines were damaged.
It is not known why conjoined twins form. Genetic and environmental factors have been explored, but because there have been relatively few cases to study, as yet, no conclusions have been reached.
Doctors use a variety of tests to help them decide if separation of conjoined twins is possible – ultrasound, MRI (magnetic resonance imaging) and 3D graphics.
Since the 1970s, chances of survival have improved dramatically. For example, livers can now be routinely separated and large areas of skin grafts can be undertaken.
Very difficult medical, moral and ethical questions have to be addressed in deciding if an operation to separate the babies should be carried out:
- Are both twins equally strong?
- What are the chances of one or both surviving surgery?
- What quality of life is likely for one or both twins after surgery?
- How does this compare with the probable quality of life if the twins remain joined?

Ethical questions

Sometimes there are sufficient internal organs to support only one twin after separation. In these situations the questions arise:

Is it right to sacrifice the life of one twin in order to save the other?
Is it reasonable to invest scarce resources in uncertain operations?

Religious Issues

Some parents object on religious grounds to separation that would inevitably kill one twin. Where there is a chance of both twins surviving, parents with strong religious convictions may agree to an operation, and accept the outcome as the will of God.

Cultural influences

The possibility of living an integrated and fulfilling life for twins who remain joined, or who are disabled by separation, depends partly on where they live, and the attitudes of people towards disability within their family or culture.

Activities

1. On Friday, 22 September, 2000, BBC News reported:

'Siamese twins Jodie and Mary should have an operation to separate them, even though one will certainly die, the Court of Appeal has ruled'.

Go to the BBC News website below

news.bbc.co.uk/1/hi/health/937449.stm

and read about the case of Jodie and Mary. The medical, legal and religious positions are explained.

Working in groups of three, one person take the position of a Doctor who is involved with the operation; a second person take the position of a Priest (Vicar) concerned with the religious, moral and ethical considerations; and a third person take the position of the judge who had to make the decision to separate the twins.
Write down a summary of the points that support the position you are defending and present your case to the other two. Question one another about the points that are made. Can you come to an agreement about the action that should be taken?

2. The following story is taken from Channel Four television's website #39;The World of Siamese Twins'

www.channel4.com/health/microsites/H/health/magazine/conjoined/history.html

Amy and Angela Lakeberg, born 1993, Chicago
The girls were born with a joined heart and liver. Their heart was flawed, and the twins could not have survived together in the long term. Surgery involved sacrificing the weaker Amy in order to save Angela, whose chances of survival after surgery were also poor. The hospital where they were delivered advised against separation, but eventually the Children's Hospital in Philadelphia decided that there was an ethical obligation to attempt surgery in spite of the poor prognosis. Amy died during the operation and Angela lived only until 10 months, when she died of pneumonia. This case raised many issues about the separation of conjoined twins:

Should separation have been attempted at all, knowing that one twin would certainly die and the other was unlikely to survive?
Did the mere fact that surgical procedures existed mean that surgeons felt bound to operate, whatever the result?
Explore the website further and find out about other conjoined twins who have been separated and how their lives have been affected.

3. Although Hassan and Hussein Salee have been physically separated as Siamese Twins, mentally and emotionally they still seem to behave as one person.

Watch a video of the programme and note down all the ways in which the two boys think and behave as one person.
What problems does this create for them and their family?
Use this information to consider how the twins might be encouraged to 'live for themselves' and not be so dependent on one another.

Links

This web page contains links to other websites that are neither controlled nor maintained by Channel 4 Television. Channel 4 Television is not responsible for the content of these sites and does not necessarily endorse the material on them.

www.conjoined-twins.i-p.com

General information about conjoined twins – etymology of the term 'Siamese Twins'; types of conjoined twins; rare forms of conjoined twins; ethics on separation.

zygote.swarthmore.edu/cleave4b.html

'A Social History Of Conjoined Twins' – this report is based on "Body Doubles: Siamese Twins in Fact and Fiction", an exhibit constructed by Laura E. Beardsley at the Mütter Museum, Philadelphia, PA, Spring 1995.

multiples.about.com/od/conjoinedtwins/

Conjoined Twins / Siamese Twins, a rare type of twinning, have long been a source of curiosity and controversy. This collection of articles and resources includes links to profiles of conjoined twins, as well as medical information about them.

//webjcli.ncl.ac.uk/2002/issue5/clucas5.html

Does medical possibility entail legal and ethical necessity? Continuing advances in medicine prompt this question, which has been brought sharply into focus in the last few years by the issue of the separation of conjoined twins.
A very detailed paper by Bev Clucas Lecturer in Law, University of Hull.

Siamese Survivors Episode 1: