BBC2 9:00pm Thursday 19th October 2000
LORI SCHAPPELL: We never wanted to be separated, we never do want to be separated and our families never ever wanted us separated because we fully believe that God made us this way and He had a purpose for us and you do not ruin what God has made.
NARRATOR (DILLY BARLOW): No-one knows exactly how many conjoined twins are living in the world today. There may be no more than a dozen but their condition challenges ideas about how human life can and should be lived.
PROF. HEINZ RÖDE (Paediatric surgeon, Cape Town Children’s Hospital): My own philosophy and that of our department is that Siamese twins are born to be separated.
NARRATOR: And the way doctors treat them raises questions that go to the heart of medical ethics: when should twins be separated and what good does it do?
PROF. JONATHAN PETER (Neurosurgeon): I think the ethical decision about separating twins is, is quite established and I think it is the right thing to do, so the risks are worth taking.
DR ALICE DREGER (Medical Historian, Michigan State University): Is this something we would do to a singleton and that’s the questions I always want to bring up.
NARRATOR: Whenever conjoined twins are born fundamental principles of medicine are thrown into conflict. Doctors struggle to separate them to give them more normal form, but these treatments carry high risks of disability, even death, for the babies involved, risks which would seldom be contemplated for singleton children. No group of doctors has more experience in separating conjoined twins than the surgeons at South Africa’s principal children’s hospital.
HEINZ RÖDE: The children travel a variety of distances to the Red Cross Children’s Hospital in Cape Town for a specific reason and that is that we’ve got the world’s greatest experience in separating conjoined twins. The first separation was in the middle 60s and subsequently we’ve separated successfully, and at times unsuccessfully, 33 pairs.
NARRATOR: Joined at the hip 8-month-old Stella and Esther Alphonce are the hospital’s next candidates for separation surgery. Every decision the doctors take will affect these children’s lives irrevocably. The twins have been brought more than 2,000 miles from their home in rural Tanzania by their mother Lucy. Whatever may result from the operation, she will be responsible for bringing up her children, but the surgeons are confident.
HEINZ RÖDE: Over the years we’ve built up a tremendous level of expertise. We have the infrastructure, we have the staff and we have the ability to do it.
NARRATOR: Experience only gives a rough idea of the problems the doctors will face with Stella and Esther. All conjoined twins are unique and we don’t even know for sure why they’re born this way. The most widely held theory is that, like identical twins, they’re created from a single fertilised egg. In identical twins the egg splits to form two separate foetuses. If the split is delayed and occurs later than 12 days into pregnancy the foetuses remain conjoined. The consequences are unpredictable. No two sets of twins are joined the same way and each presents a formidable challenge to medicine.
ARCHIVE FILM NARRATOR: A successful operation has separated these Siamese twins…
NARRATOR: 50 years ago any separation was headline news. Only the most simple operations were attempted. About 200 pairs of twins have now been separated, 90% of them in the past 4 decades.
ARCHIVE FILM NARRATOR: A medical triumph.
NARRATOR: As medicine advanced, doctors undertook more complicated cases, but their new skills forced them to confront extreme moral issues which had not arisen before. The Children’s Hospital in Philadelphia has been a pioneer in separation surgery. Here, doctors had to face the most difficult problems.
DR. JOHN TEMPLETON (Children’s Hospital of Philadelphia 1977-1995): We recognised early on twins with conjoined hearts gradually were going into heart failure and the smaller the twin, in almost every situation one of the conjoined twins is smaller than the other, the deterioration of the smaller twin starts to act as a parasitic drain on the larger twin and as a result, if nothing is done both of them will die and that has prompted us in more than 4 cases to decide to separate them where all the heart tissue would stay with one twin and we knew that as a result of the separation the smaller, weaker twin would die.
NARRATOR: Their most challenging case came in 1993 with the arrival of Angela Lakeburg and her twin sister Amy. Doctors believed that if they weren’t separated both would die within weeks. There was a small chance that surgery could save one, but only if the other was sacrificed. The parents were faced with an agonising decision.
JOHN TEMPLETON: We had detailed consultations with the family and explained the anatomy and the impossibility of being able to leave any heart tissue with Amy and the parents, after very careful consideration, agreed that they wanted to at least have the possibility that Angela would survive.
KENNY LAKEBURG: I don’t have a positive outlook on this. I don’t know what to think. Hopeful, hopefully everything works out right.
JOHN TEMPLETON: The surgery was undertaken and at the end all of the repaired heart tissue was then left with Angela.
NARRATOR: Amy died, but Angela had only a fragile hold on life.
JOHN TEMPLETON: Gradually over about a 5 months period she was weaned progressively from the respirator so that she could be off the respirator for as long as 5 hours and at that point something happened. We don’t know whether it was with the lungs or with the heart, or the general circulation, but she got into trouble and began to deteriorate. She went back onto 24 hour a day ventilation but she continued to deteriorate and after about 2 days her heart gave out and she just died.
NARRATOR: The surgeons had struggled to save one life, but the case provoked anger about the treatment of conjoined twins. Vocal criticism of doctors has come from a medical historian who suggests sacrifice surgery is a form of euthanasia.
ALICE DREGER: In these cases the only way to have a twin survive in their opinion was to have only one of them survive and so they would do a conscious asphyxiation of one of the twins. In other words, kill off one of the twins in order to amputate it off of the other one. In no other realm of medicine can you take a brain live person and essentially asphyxiate them, to effectively use them as an organ donor.
JOHN TEMPLETON: It’s a great dilemma from a moral and ethical viewpoint to address the question in which you will do surgery in which you know that one unique individual will die as a result. We are faced, however, with the conundrum that we know that both of them will die unless something is done and we’re faced with the question of should we do something that would enable one twin to have a chance of survival and leading a reason, reasonably normal life, or just to throw up our hands and give up and say well let’s not do anything.
NARRATOR: From 12 known cases of sacrifice surgery only 2 infants have survived for more than a year.
ALICE DREGER: We have to look and question whether or not the latest technology is really the best technology, or should we in some cases leave conjoined twins alone, give them basic medical support and let them live out the extent of their lives.
NARRATOR: The sacrifice of a twin is not the only moral dilemma. Surgeons at Great Ormond Street Hospital have had to decide whether to separate twins who were conjoined but otherwise healthy.
EDWARD KIELY (Great Ormond Street Hospital): That is an extremely difficult problem because under those circumstances there is no over-riding medical indication to operate. You’ve got two healthy children. You can’t make them better than they are if they’re healthy. You can certainly make them an awful lot worse and you may kill one or both in the attempt to separate them.
NARRATOR: Katie and Eilish Holton were born in Ireland in 1989. They each had a heart, but shared one pair of legs. Worried about the future, their parents approached Great Ormond Street.
PROF LEWIS SPITZ (Great Ormond Street Hospital): Katie and Eilish were unique because the parents actually brought up the question of separation when they were 3 years of age. Up to that stage there was no question of operations or separation and they questioned whether separation should be attempted.
NARRATOR: The parents eventually decided their children’s lives would be better if they were separated. No-one had ever attempted to separate such closely conjoined twins in the hope of preserving both.
LEWIS SPITZ: We managed to save Eilish but Katie died. Following separation Eilish was clearly devastated that her twin had disappeared and for one year after surgery she would not talk to me.
NARRATOR: It’s hard to know whether Katie and Eilish would have remained in good health if they’d stayed conjoined. Could the benefits ever outweigh the loss?
LEWIS SPITZ: I regret losing Katie, but I don’t regret saving Eilish for a good quality of life.
NARRATOR: In Cape Town Stella and Esther’s condition is already causing some concern.
HEINZ RÖDE: The main worry that faces us at the present moment is the junction of the spinal cord. Because it is joined right at the end where there are very important nerves to the lower legs, if the cord has to be separated through an area of function there may be paralysis to the legs or there may be paralysis to the bowel or perhaps paralysis to the, to the muscles that control continence. It is imperative to ascertain exactly where they are joined and what areas are not joined so that one can plan the separation to give them the maximum chance of normality afterwards.
NARRATOR: The twins are anaesthetised for an intensive internal examination. The doctors hope it will give them a full picture of their anatomy. Lucy will have to wait 3 hours before she knows what they’ve found. Stella and Esther are joined at the buttock and share a single anus. What is most critical is how their spinal cords merge. The twins are X-rayed from every angle. If the ends of their spinal cords are fused together it will be difficult for the surgeons to separate them without damaging their nervous system.
The investigation does not reveal exactly how these delicate nerves are connected. The surgeons will only find out during the operation in 2 days’ time. As the twins come round, Professor Röde hastens to reassure their mother.
HEINZ RÖDE: We think that we can very easily separate the two children from each other. The separation will be on Wednesday. It’s going to be a very long operation and we probably will be finished by 5 o’clock in the evening.
After the operation they will be like normal little girls. They have, they have all the organs that belong to girls, so tell her please that her two daughters will be like normal daughters so when they bit they will be able to have babies and function like normal women.
NURSE: Keep your capses on. OK, I’m sorry, I’m sorry, I’m sorry.
NARRATOR: Separation could leave the twins disabled or incontinent, yet Prof. Röde believes it’s a risk worth taking.
HEINZ RÖDE: They’re very cuddly at the present moment and everyone likes them, but once they’re 10 years old how will they go to school. They will always have to share whatever they do. That is defecation they will share, it’s a practical example, they will share mobility, they will share sleeping, they will share the ups and downs of life and I think it’s untenable in the African. I think for, for the rest of the world it’s unacceptable to live in close proximity to somebody else if the chance had been for a successful separation earlier on. You cannot go through Africa in this, in this situation. You will be outcast, you will become a, a monster, you will become a curiosity, you will become a showpiece.
NARRATOR: In the past twins joined like Stella and Esther have survived and taken advantage of their unusual anatomy. Born in North Carolina in 1851 Millie and Christine McCoy would almost certainly have died if doctors of the time had tried to separate them, but they achieved international fame as public performers and were even guests of the British Royal Family.
ALICE DREGER: The irony of the case of Millie and Christina is the fact that they probably did end up much better off than they would have had they been born singletons. They were born to an enslaved woman in the South of America and they were bought, sold, kidnapped, transported all around while they were still young, but it appears when they became adults that they wound up with a decent caretaker who let them basically keep the money that they were earning and they actually, or so the story goes, wound up buying the plantation on which they were born and wound up as fairly wealthy women. They wouldn’t have been able to do that had they not been born conjoined and that’s the irony there.
NARRATOR: When Violet and Daisy Hilton were born in Brighton in 1909 doctors made no attempt to separate them. Joined at the hip they were exhibited from an early age and went on to have a successful showbusiness career. The original Siamese twins, Chang and Eng Bunker, were joined by a narrow strip of flesh. They did discuss separation, but it would have deprived them of the main source of their income and fame.
JOHN TEMPLETON: Very often doctors would be consulted to see whether they could be separated and by then the doctors knew how famous they were and they were afraid that if they tried to separate them that one or both of them might die and they didn’t want to be responsible for that.
NARRATOR: The brothers invested their earnings in a farm in North Carolina and married two local sisters. Between them Chang and Eng fathered 21 children.
LORI SCHAPPELL: We are two fully individuals from head to toe and there’s just blood, tissue and bones connected and we’re two fully functioning human beings.
NARRATOR: Even today twins who cannot be separated lead independent lives.
Lori and Reba Schappell do not hide themselves away. With their disabled pet dog they live in their own apartment in Pennsylvania and they’re determined not to let their anatomy dominate their lives.
LORI SCHAPPELL: We just happen to be born at birth with the corner of our forehead and that side of us connected and that’s it and that’s where that ends. Even though it’s there all the time it’s not there all the time to us. I mean we still lead normal, productive, everyday lives. We’re not solely conjoined twins. I get tired of everybody thinking about that that’s all we are, are conjoined twins. I’m just conjoined to another human being.
NARRATOR: Though they’re genetically identical Reba has spina bifida and can’t walk.
LORI SCHAPPELL: Frankly we’re fine, you know. We lead regular, normal lives. We do everything every-body else does, you know, I mean I go shopping when I want to and being conjoined has nothing to do with any of that. It’s just an integral part of our being and that’s it.
You still have your potato balls? (No) Oh shoot.
I don’t hate being a conjoined twin. It’s the stuff that comes with it.
REBA SCHAPPELL: You have to look at how the individual who is set conjoined perceives themselves. If you perceive yourself positive the public will look at you positive. Maybe it will take a while, but even if the public doesn’t look at you positive, if you’re positive enough you’re not going to give a, a hoot and anny of how they look at you. You’re going to like your-self the way you are. Do you, do you under… I hope the public out there does understand this.
NARRATOR: Doctors didn’t dare to separate Lori and Reba as infants because they were joined at the head.
JOHN TEMPLETON: Here we go, we’re going in here into the…
NARRATOR: When they were 30 new scanning technology allowed the doctors to take a clearer look at the twins’ brains.
JOHN TEMPLETON: We have learned a tremendous amount from the MRI that we could only guess at back when Lori and Reba were children. We can see the tremendous amount of conjoined brain tissue in here. The fusion is sort of a, a dense flow of nerve tissue that all comes together. There’s not a dotted line in here.
NARRATOR: Lori and Reba’s anatomy is not just unique. It raises fundamental questions about how the brain works.
JOHN TEMPLETON: They share a significant portion of their frontal lobes. The frontal lobe is probably still one of the last mystery areas of the brain, but it does seem to have relationship to personality as well as to higher intellect, so in spite of our prediction that they would have the same personality, same likes and dislikes, they’re really quite unique individuals, so it tells us (1) that medically scientifically we’re a long way from understanding how the brain works. We’re also a long way from under-standing what makes individuality.
HEINZ RÖDE: I think that we see in all the conjoined twins that we’ve separated they’re not, they’re not similar, they’re different and I think that, that is one reason why they need to be separated because they will develop different personalities and there’s no way you can keep them joined for the rest of their lives.
NARRATOR: For Tanzanian twins Stella and Esther these are the last few hours they will spend joined together. Two teams of anaesthetists are standing by. Their mother delivers them to the operating theatre. To identify the twins they’re given different coloured caps – yellow for Esther, red for Stella. Each twin has to be anaesthetised separately, but as the drugs circulate between their two bodies they have to be very closely monitored. It’s time for Lucy to leave. It will be many hours until she sees her babies again. Her longest and most anxious wait now begins. The major challenge will be to unpick the delicate nerves at the base of their spinal cord. It’s the first time the surgeons have attempted to separate twins joined this way.
JONATHAN PETER: Our big concern is when we separate this part of the spinal cord that we can do further damage to that part of the spinal cord which innovates the musculature of the lower legs.
NARRATOR: Although the twins could end up disabled in their lower limbs, the surgeons have no doubt that they must go ahead.
JONATHAN PETER: There’s no question that we have to separate the children. I mean to live a life joined together at the waist is no life to live at all, so I think the ethical decision about separating twins is, is quite established and I think it is the right thing to do, so the risks are worth taking.
NARRATOR: It’s also a step into the unknown. X-rays and scans have been unable to give the neuro-surgeons a complete picture of what awaits them.
HEINZ RÖDE: The plan would be for Professor Peters to open the spinal cord from behind, in other words do laminectomies and expose the component of the spinal cord that we’re interested in and he will then stimulate that cord and see what the responses as far as muscle function in the lower legs are concerned and that will give us a clear idea as to what component of the cord supplies which leg and to what extent.
NARRATOR: With their spinal cord exposed, Stella and Esther are at their most vulnerable. Any stray organism could cause an infection that could cripple or even kill the infants. Outside the theatre, hospital staff gather round a monitor showing the surgeons at work.
REGISTRAR: We have opened the, the, the thecal sacs that are overlying the spinal cords and we’ve got the one twin’s head laying up here, the other twin’s head lying over in this direction and this is the base of their spinal cords. This is the cut edge of the dura and lying just adjacent to this in this area here is the fused spinal cords. They’re fusing in this region here. These lines that you can see running off away from the spinal cord are the nerve roots leading off into the legs of the twins. The challenge now is to try and separate between the two. There’s no clear plane of cleavage between the two twins and the challenge now is going to be to separate between the two without causing any more neurological damage than we have to.
NARRATOR: Professor Peter has now reached the part of the cord which is fused together. It is almost impossible to tell which part leads to which twin. Cutting cautiously through the tissue he can only hope that he’s got it right. If not, one or both twins could be left paralysed. Would that be a price worth paying for separation?
ALICE DREGER: Conjoined twins tend to grow into a body that they’re born with, the same way the rest of us do and so they’re born into this body joined and they will develop an understanding of their lives as joined. Now that can be very difficult in a place like Tanzania, but I’d also have to ask the question would that be any more difficult than, for example, being paralysed from the waist down, and is that a justified reason for going ahead with the surgery like that? These are very difficult cases and I’m not saying there’s a simple answer, though we have to at least take into account what conjoined twins themselves would say.
NARRATOR: Abby and Britanny Hensel are happy, energetic girls. Joined at the spine it would have been extremely difficult to separate them as babies without risk of disabling or killing one or both. Unseparated the twins live remarkably normal lives.
(HENSEL TWINS SINGING)
WOMAN: Don’t you know anything a little more…
CHILD: You want rock-and-rollish? (Yeah) OK, I’ll give you rock-and-rollish. (SINGING CONTINUED)
NARRATOR: Not all conjoined twins have enjoyed such love and support.
(ACTUALITY RUSSIAN CHAT)
Masha and Dasha Krivoshlyapova are the oldest conjoined twins alive today. They live in Moscow where they’ve spent most of their lives. Today they’re enjoying a national holiday with the few people they’ve learnt to trust.
(ACTUALITY RUSSIAN CHAT)
Nadia Gorokhova has known the twins since they were children
(ACTUALITY RUSSIAN CHAT)
When they were 6 they came to the hospital where she worked, unable to walk or
even feed themselves.
(ACTUALITY RUSSIAN CHAT)
Until they met Nadia, Masha and Dasha were treated as objects of science. Taken away from their mother at birth – she was told her babies had died – Masha and Dasha were locked away in Moscow’s Paediatric Institute. For the next 6 years they were subjected to a programme of medical experimentation.
JULIET BUTLER (Biographer): The USSR was one of the worst possible countries for conjoined twins to be born in. Nobody was allowed to see them. When they were very small the doctors had to get passes to go into the laboratory where they were being kept to see them and they all had to wear masks so the girls were saying they, they never even saw the doctors’ faces. Pain was inflicted on them every day. There were no babies, they used to prick one with a needle to see if the other one would cry, they’d pack one in ice to see how quickly the other one’s temperature dropped, they’d starve one and keep feeding the other one regularly gave them injections of, of substances to see how quickly it got from one body to the other.
NARRATOR: Once the scientists had finished with them Masha and Dasha were sent to live in a hospital, shut away but unmolested.
(ACTUALITY RUSSIAN CHAT)
These days they live a more open life. Their friendship with Juliet stretches back 10 years, but encounters with the public still attract trouble.
DASHA KRIVOSHLYAPOVA: People call us two heads. You hear all sorts of rubbish and it makes us cry.
JULIET BUTLER: It’s dreadful the things people say to them, it’s just appalling and Masha will always shake her fist at them and scream back at them but Dasha gets very upset and then she’ll go home and perhaps cry. Why are people so nasty to us, why do they say that we ought to have been killed at birth. Maybe we should have been.
(ACTUALITY RUSSIAN CHAT)
NARRATOR: Among Juliet’s friends and family Masha and Dasha are relaxed, but their emotional relationships have not been easy, not even between themselves. When they were teenagers they left Moscow for school in the south of Russia.
JULIET BUTLER: That was the most enjoyable time in their lives from the age of 13 to 20
and when Dasha was 18 she fell in love with a boy called Slava and they were very deeply in love with each other, but Masha had a very different character. She was boyish herself. She used to sneak a few kisses but there was no real romance. She didn’t understand that Dasha was falling in love and when she realised that she had fallen in love she thought she’d have to put a stop to it and, and she said to Dasha what are we going to do, you know, I, I can’t live with Slava all my life and I’m certainly, you know, not, not, happy to have you kissing, I mean OK, you can turn around and go and kiss but I don’t want anything else happening. I mean I’m not interested in him and she put a stop to it really and said right, that’s it, we’ll go back to Moscow and leave Slava and it broke Dasha’s heart.
DASHA KRIVOSHLYAPOVA: No, no, we were just friends. He died. Why remember that now? It’s all in the past.
NARRATOR: They now live in relative comfort in a home on the outskirts of Moscow and have no wish to be separated.
DASHA KRIVOSHLYAPOVA: We’d never agree to such an operation. We just don’t need it.
MASHA KRIVOSHLYAPOVA: Even when we were little we didn’t want that. We are a little collective. We share our grief and our tears.
DASHA: We’re 50 now. We’ll stay like this for the rest of our lives.
NARRATOR: 7 hours into surgery the separation of Stella and Esther is at the point of no return. Their fused spinal cords have been separated. It’s a surgical first, but the outcome is uncertain.
JONATHAN PETER: We were hoping that we had found at the junction of the spinal cord that there was a plane which we could see separated the two halves. What we found at surgery was in fact that the spinal cords were joined imperceptibly. We couldn’t actually distinguish where they separated and what part of the spinal cord provided nervous sensation and motor function for which child. The risk factor is greater now so we’ll have to wait and see until the general surgeons have finished doing what they’re doing and wait for the child to get over the anaesthetic to see how the legs function.
(ACTUALITY OPERATION CHAT)
NARRATOR: Now the general surgeons begin to cut through the soft tissue to complete the separation of Stella and Esther.
SURGEON: Alright, shall we start.
SURGEON; That’s OK.
SURGEON: Scissors please and forceps. I think the level of cleavage is here and we take it up to down there.
NARRATOR: This work is less hazardous than dealing with the nerves of the spine, but it’s a painstaking task as the surgeons pick their way through blood vessels and muscle fibres.
(ACTUALITY OPERATION CHAT)
SURGEON: Let’s, let’s do the separation. We’ll come back to that.
SURGEON: (INAUDIBLE REMARK)
SURGEON: It looks like a… Yeah.
NARRATOR: Then comes the actual separation. Stella and Esther are no longer conjoined. A little applause, great relief, but the doctors and nurses are tired and there’s still much to be done. The team divides. They now have two separate patients and each has a large area of exposed tissue to be covered.
(ACTUALITY OPERATION CHAT)
The babies young skin is very elastic. The surgeons stretch it to cover the wounds and slowly stitch them up. It’s taken 14 hours to complete the operation. The first day of Stella and Esther’s new life. For their mother the longest day is over, but she still has to wait to find out whether her babies have come through the operation without disability and to think about what they may have gained by being separated. For Millie and Christine McCoy being conjoined brought wealth and fame. Their reputation was supposedly based on their talent as singers, but the real focus of public fascination lay elsewhere. They had to undergo scores of medical examinations which concentrated on their intimate anatomy. Details were published in journals and publicity material. Violet and Daisy Hilton earned a lot of money as film stars and entertainers. The plot of one of their movies was about the love life of conjoined twins, but when Violet sought real romance in her life she quickly encountered disapproval.
VIOLET HILTON: I am Violet Hilton. This is my prospective husband, Maurice Lambert. Yesterday we tried very hard to procure a marriage licence both in the states of New York and New Jersey, but in both places were refused. I feel very, very unhappy about it because I love Maurice very, very dearly and he loves me and I don’t see any reason in the world why we should be denied the pleasure of being happy.
NARRATOR: Violet was refused a marriage licence in 21 different states.
ALICE DREGER: The notion was that this was a moral outrage, that if you had two conjoined twins getting married that meant that you’d essentially be sanctioning group sex. What that fails to understand is that conjoined twins when they have sex they always describe it as having sex one on one, that is the other conjoined twin who’s in the bed with them simply zones out and pays attention to something else.
DAISY HILTON: I think that my sister’s marriage will be a very wonderful thing because I know they love each other and intend to be married just as soon as possible.
NARRATOR: In time both Violet and Daisy were allowed to marry. Neither marriage lasted long, but the sisters had no desire to separate from each other. They were offered surgery, but turned it down. In 1969 they died within hours of each other. And that is the fate of twins who remain conjoined. They live together and die together. The original Siamese twins, Eng and Chang, were 61 when one of the brothers fell ill.
JOHN TEMPLETON: Chang had a terrible stroke so they retired at that point and 2 years later Chang developed some sort of illness that seemed to be respiratory nature. He had difficulty breathing, he couldn’t lie down, he was in some distress.
NARRATOR: A sense of panic then overtook the other twin.
JOHN TEMPLETON: In the middle of the night Eng woke up with a terrible sense of apprehension and he could not arouse his brother. Then he called his family and, and they said Uncle Chang is dead. Eng began to complain of weakness and sweatiness and cramps in his muscles and after several hours he said has the doctor come yet and they said no father, he’s not here, at which point Eng said then I will die too and within an hour of two he died.
NARRATOR: What puzzled doctors at the autopsy is why Eng had also died, even though he’d been in perfect health.
JOHN TEMPLETON: It’s clear when you go back to the records from the embalmer what really happened. Chang, who died first, his body was totally suffused in blood whereas Eng’s body had very little blood left in it and it’s clear that they shared blood across that band, even if it was a narrow band, they shared perhaps a small percentage of their cardiac output, their blood flow from one to the other. When Chang died Eng continued to pump his own blood into Chang, but there was no way that Chang could return blood to Eng, so what really happened is that Eng bled to death. If anybody had just taken a strong rope and tied it tightly on the band between them the haemorrhage would have stopped and he would have survived.
NARRATOR: If they were alive today Eng and Chang could be separated by a General Practitioner, but they wouldn’t have become such famous and wealthy men.
ALICE DREGER: A lot of conjoined twins can’t make a living today. They can’t be hired because people don’t want to hire them and you have the flip side that they can’t exhibit themselves because people think that, that’s distasteful. The irony is that a lot of people with unusual anatomies today do exhibit themselves for money and these are people with unusually beautiful anatomies, these are people who we think it’s perfectly fine to have them exhibit themselves to make profit. We don’t see that as prurient or pitiful.
NARRATOR: Reba Schappell is aiming at a showbusiness career – as a country singer.
REBA SCHAPPELL: I’ve done some there. Yeah, that’s right, it was at the Allantown Fair. (Oh) Yeah, that’s where I did it once.
LORI SCHAPPELL: That’s wonderful.
REBA: That was ’94.
REBA: That was me and Reba Macintyre.
LORI: Oh Reba. (Yeah) Oh wow.
REBA SCHAPPELL: Country fans are the coolest. They believe in you, they don’t look at this as conjoined crap, they just look at me as a musician. Thank God at least they look at me just as a singer and stuff like that.
LORI SCHAPPELL: Her career is her own doing. I support her in that she’s my sister and I love her and whatever she wishes to do I back her 100% as a sister and I would not stop her for anything in the world because I have no reason to. I’m happy with just flying on her wings so to speak. We never wanted to be separated, we never do want to be separated and our families never ever wanted us separated because we fully believe that God made us this way and He had a purpose for us and you do not ruin what God has made.
NARRATOR: Till recently, the twins’ opinion might have gone unchallenged, as no surgeon would have tried to separate twins joined like them but medical technology moves on. Microscopy and imaging technology have entered the operating theatre. Surgery no longer just depends on skill with the scalpel and surgeons are already operating on craniopagus, those who are joined at the head.
DR BENJAMIN CARSON (Johns Hopkins Hospital, Baltimore): I first got interested in conjoined twins many years ago and I was just wondering to myself why is the mortality and morbidity associated with separating craniopagus twins so high?
NARRATOR: The neurosurgeon had attempted to separate craniopagus twins on two previous occasions, without success. Then in 1997 he was asked for his opinion on a new case in South Africa.
BENJAMIN CARSON: So I flew up there and saw them and just immediately fell in love with, they were just so cute.
NARRATOR: Although Joseph and Luka Banda were joined at the head scans suggested that their brains were not fused together. Theoretically it would be possible to separate them without killing either. Dr. Carson agreed to take on the case. This time he had new technology to help him. Magnetic resonance images of Joseph and Luka’s brains were fed into a computer to create a virtual 3D replica. It revealed every detail of the complex blood supply the twins shared.
BENJAMIN CARSON: It was fantastic. When I put those glasses on and went in to the virtual work station it was like I had them right there in front of me.
NARRATOR: Having rehearsed the operation on the computer in Baltimore, Dr. Carson returned to South Africa to operate on the twins, but in the middle of the 28 hour operation something unforeseen occurred. Dr. Carson could no longer find the plane of separation which divided the boys’ brains.
BENJAMIN CARSON: There came a point when looking at their brains it appeared that there was no plane and that we wouldn’t be able to, to get them apart, except that I knew from having done the virtual surgery before, that there was a plane and I remembered where the plane was so I began to tease in that direction and eventually the plane showed itself.
NARRATOR: The technology had revealed something his own eyes would not have seen. Dr. Carson went on to complete a unique separation.
BENJAMIN CARSON: After 28 hours and after a point where we almost gave up again because the vascular anatomy was so complex, they woke up. Now one of them right in the operating room popped his little eyes open and reached up for the tube and tried to extubate himself. The other one was doing the same thing by the time we got to the intensive care unit. Within 2 days they were extubated, within 3 days they were eating and within 2 weeks they were crawling around, neurologically intact and it was just unbelievable.
NARRATOR: The Banda twins still have to undergo plastic surgery and it remains to be seen if they’ve suffered any lasting mental impairment, but Joseph and Luka will lead separate lives.
In Cape Town Stella and Esther appear to have no adverse effects from their surgery.
The operation has been a greater success than their doctors dared hope.
JONATHAN PETER: Obviously when one divides spinal cord you’re not certain how the legs are going to function afterwards, so we were really gratified when we were able to separate the spinal cords and the legs moved as they moved previously. I’m certain that the children’ll walk normally.
HEINZ RÖDE: Can I ask you a favour – please let us know every now and then how they go
and that we would very much like to know when they go to school and when they fall in love (LAUGHTER) and when they marry and so will you? Don’t, don’t lose contact with us.
I’m ecstatic, I’m really ecstatic. I think they came, they came as one, they go back as two and that was the aim of the exercise.
NARRATOR: Final proof will only come when Stella and Esther start learning to walk. For now the risks that were taken seem to have paid off. Success and technology will encourage operations which were once inconceivable. Each case will present new human and moral dilemmas.
BENJAMIN CARSON: I do believe we still have a lot to learn, I believe
that technology will continue to improve, but I think 10 years from
now separating conjoined twins will probably be considerably easier
than it is now. If you think surgeons of today are good, surgeons
of tomorrow will be unbelievable.
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