posted
Saw a documentary about a Egyptian girl, Manar Maged, and it was impressive. I guess this girl's life-story must have been news of the day, during her short life. Strange enough nobody ever told me about her.Who knows the story?
Manar Maged, born 30 March 2004, Aghur, Egypt
Manar Maged was born with a rare condition called craniopagus parasiticus, making her a a type of conjoined twin. Craniopagus refers to the twins being joined at the head (see Types of Conjoined Twins). Parasiticus describes the way that one twin is completely dependent upon the other. The condition occurs when an embryo begins to split into identical twins but fails to complete the process – as a result one of the conjoined twins is not properly developed.
Twins born joined at the head are extremely rare, accounting for one in every 2.5 million births. Parasitic twins like Manar's case are even rarer. Manar's condition has only been recorded 10 times in medical history.
The underdeveloped twin, attached to the upper left side of Manar's skull, has a brain but no body and depends entirely on Manar for survival. Despite having no lungs and being unable to breathe, her second head displays signs of independent consciousness. It blinks, tries to suckle and even smiles and cries. But the weight of the underdeveloped twin put a tremendous strain on Manar's heart, and would prevent her from crawling or sitting upright. Doctors felt that the only hope for Manar was separation from her twin.
The 13-hour operation was carried out in the town of Benha, 25 miles north of Cairo, and was the first of its kind in the Middle East. Following surgery, Manar showed no signs of paralysis and could move her limbs. After the surgery, Manar's conjoined twin was buried; the family named her Islaam.
Sadly, Manar died in March 2006 from a severe brain infection, 13 months after her operation.
The case raises interesting questions about the nature of identity. At what point does the 'parasitic' twin in cases such as this develop an individual identity of its own? When it has a brain? A face? A beating heart? If it is capable of independent thought or movement? When should we stop viewing it as an additional part of one child's body and instead see it as another child, if a severely disabled one?
See To Separate Or Not? for other challenging questions raised by cases of this kind.
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.
posted
They had a documentary film about this on tv in the UK last year. So sad.
One of the things that stuck in my mind was that the treatment cost a huge proportion of the entire annual budget of the hospital - 320000LE - that is just about $64000!! (I might have misremembered the figures but it was something along those lines).
Posts: 5593 | From: Egypt | Registered: Dec 2005
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posted
Right, it costed most of their budget, but it has made them worldfamous, and she (the doctor) hoped that it would bring them more possibilities, because there are children born with disabilities all the time. I switched in on that time, so I didn't watch the complete documentary. The doctor was a woman (Shanta, didn't you need famous women in Egypt?) and she looked so familiar to me. Immediatly I recognised that this had to be Egypt, and my son, who watched with me, was shocked about the poverty. By co-incedence I know how children-hospitals are here, and he also knows. When a child has been born with serious injuries, the child is transported to such a hospital. They start to find out where there is a free place, so it's possible that it is a long way from home. But then the possibilities are unlimited. Of course they have budgets, but the money is not on first place, they will do whatever what's needed. And both we were able to see the big differences in that. The mother of Manar was a poor village-women, and in fact she was lucky that her daughter had such a rare disability, and it became a challenge for the doctors to help her. When the injury wasn't that rare, probably all this children die...
-------------------- “Out beyond ideas of wrongdoing and rightdoing, there is a field. I will meet you there.” Posts: 7202 | From: EU | Registered: Nov 2006
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Press the button on the bottom right hand side where it says 'add itmem'
Put their full name, Main field, More specifically what they do, IN or OUT (of Egypt - where are they based? Just write In or Out, then a hyperlink to something about them on the internet, they your name and an 'edited by' - your name again).
PLEASE NOTE - ONLY **EGYPTIAN** WOMEN NOT ARABIC IN GENERAL
I have a pile of names in my cupboard to add when I get time to go through it Posts: 5593 | From: Egypt | Registered: Dec 2005
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