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Parents of conjoined twins face an impossible choice, involving a range of challenging, and often unanswerable, questions.
Is surgery viable? [top] [next]
In deciding whether separation is an option, doctors employ a battery of tests —such as ultrasound, MRI (magnetic resonance imaging) and 3D graphics —to assess:
- the whereabouts and extent of the join,
- whether any internal organs are involved.
The experience of the medical team who would perform the separation is also a factor. If separation seems feasible, its effects on both twins must be weighed up:
- Are both twins equally robust?
- 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?
Too keen to separate?
Dr Alice Dreger, Professor at Michigan State University, believes that surgeons are generally too keen to separate. 'They work under the premise that death is preferable to life as a conjoined twin. The greater the odds, the more surgeons relish the challenge. They want to be miracle workers, and they want the fame and fortune that these operations bring.' The 1993 case of the Lakeberg twins illustrates this point.
Ethical questions [top] [next]
With most sets, one twin is stronger, and doctors may make decisions in the interests of that twin, rather than both. Sometimes there are sufficient internal organs to support only one twin after separation, and the outcome of the operation may also be doubtful for the other. In these situations the questions arise:
- Is it right to sacrifice the life of one twin in order to save the other, as in the recent case of Jodie and Mary?
- Is it reasonable to invest scarce resources in uncertain operations?
According to Nancy Segal in her book Entwined Lives, 'Legal and ethical experts generally support "reasonable medical attempts" to separate conjoined twins, as well as surgical intervention on behalf of one twin, that is, the sacrifice of one twin for the other when survival chances are otherwise minimal for both.' However, not everyone who is closely involved with conjoined twins, sometimes including their parents, always agrees with this stance.
Religious considerations [top] [next]
Some parents, like those of Jodie and Mary, object on religious grounds to separation that would inevitably kill one twin. In this case, the parents' objections were over-ruled by a judge, in a testing and controversial legal case. 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. This view was expressed by the mother of Hassan and Hussein.
Cultural influences [top] [next]
The prospects of an integrated and fulfilling life for twins who remain joined, or who are disabled by separation, depend partly on where they live, and the attitudes towards disability that prevail within their culture or family.
Where they live
- Masha and Dasha, born into Soviet Russia, have been treated as outcasts since birth.
- The mother of Esther and Stella did not want to risk separation. Professor Rode, who treated the girls in the Red Cross Children's Hospital, Cape Town, believes that separation is the only option, whatever the risks, because, he says, if left unseparated, 'in the African context, they would become outcasts and curiosities'.
Attitudes towards disability
- Some parents cannot contemplate leaving twins joined, despite the risks of separation. The Rozyckis, now adults, both survived separation, but agree with the view their parents took at the time, that it was right to risk losing a twin in order that at least one would have a normal life.
- Others parents wonder why remaining joined is such a terrible option. Parents of the Hensel twins argue that the girls are more able-bodied together than they would be apart. The Lewis twins survived until age six with a shared heart.
What do twins think about being separated? [top] [next]
- Although the difficulties they face are considerable, some conjoined twins, like Lori and Reba, are content, and have adjusted psychologically and physically to their shared lives.
- Ladan and Laleh Bijani said that they had waited for 29 years for the operation to separate them, and were determined to go ahead with it, whatever the risk.
- Twins separated in infancy, like Hassan and Hussein, who have no memory of being joined, may be glad to have had the chance of independent lives.
When to separate [top] [next]
- In the past, surgery was delayed until twins were 6-12 months old, so that they could become stronger, and surgeons would have a chance to stretch the skin in preparation for the operation. Now that life-support systems and diagnostic tools are more sophisticated, there is a move towards earlier separation.
- Immediate separation is needed when one twin is stillborn, or is in such a poor state that the health of the other is threatened.
- Separation whilst twins are still too young to realise that they are joined is thought to help their psychological recovery.
New developments in surgery [top] [next]
Since the 1970s, chances of survival have improved dramatically. Twins joined at heart or brain were formerly regarded as inoperable, and are still the most difficult separations to tackle.
- Surgeons now routinely separate livers, and have developed ways to cover large wounds with skin and reduce the risk of infection.
- Dr Marion Walker, in Salt Lake City, Utah, has separated three sets of twins joined at the skull and brain. All six children survived, though with varying degrees of brain damage.
- At the Red Cross Children's Hospital, Cape Town, South Africa, Professor Sidney Cywes and his colleagues have separated two sets with conjoined hearts, each time with the immediate loss of one twin. Of the two survivors, only Sipho Momoti is still alive, the other having died after a few months.
Pioneers in conjoined twin surgery [top]
- Dr James O'Neill, the American pioneer at the Philadelphia Children's Hospital, has advised on 50 cases and operated on 17. He is now at Vanderbilt University in Nashville.
- Dr James Templeton, formerly a colleague of Dr O'Neill's at the Philadelphia Children's Hospital, is now in private practice.
- Professor Sydney Cywes (now retired), Professor Heinz Rode and Professor Alistair Millar, of the Red Cross Children's Hospital, Cape Town, South Africa (see New developments in surgery), have dealt with 34 cases, the most of any centre in the world.
- Dr Marion Walker, in Salt Lake City, Utah, has separated three sets of twins joined at the skull and brain (see New developments in surgery).
- Professor Lewis Spitz and Mr Edward Kiely, of Great Ormond Street Hospital, London. Mr Kiely has been present at most of Professor Spitz's 12 separations, including the operation to separate Hassan and Hussein, and since 1992/3 he has also led on some cases himself.
- Dr Robert Filler (now semi-retired) and Dr Harold Hoffman operated on seven cases in Toronto. Dr Filler has also advised on a further five sets in other hospitals.
- Dr Alice Dreger of University of Michigan is an expert on the ethical questions surrounding conjoined twins (see Too keen to separate?).
The Further information section lists organisations offering support to the families of conjoined twins, as well as details of links to many related websites, and books on the subject.
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