Shiloh, 8, is the only living person with sirenomelia, or "mermaid syndrome", who has not undergone cosmetic surgical separation of her legs. In 2005 Peruvian doctors separated the fused legs of Milagros Cerrón in an appalling operation in which the head surgeon literally spoke to news cameras while cutting the child's flesh. Neither Milagros nor the other known surviving sirenomelian, Tiffany Yorks, can walk on her surgically constructed legs.
In this video, Shiloh demonstrates her impressive adaptability and declares that she is happy with the way her body is.
Tuesday, October 9, 2007
Sunday, July 15, 2007
Indian villagers worship conjoined twin girls as goddess incarnation
Bareilly villagers worshipping Siamese baby as "Goddess"In the "civilized" world, especially in places like big-city India where the cutting-edge medical technology of the 2000s is combined with the conformity-centered medical ethics of the 1950s (see entries about Dr. Nayudamma, below), the "modern" approach would be to surgically halve these babies' torso and pelvis and then dump them back in their backwater village as crippled future beggars. In the "primitive" world into which they were fortuitously born, however, they are recognized as something rare and special and treated accordingly. Yes, I'd definitely say it's a shame that these poor benighted Hindu parents are so woefully ignorant.
By Vineet (DailyIndia.com)
Indalpur, July 15: Ignorance is perhaps not always bliss, as it appears in Indalpur Village of Uttar Pradesh's Bareilly District. The blind faith and ignorance here has led to the worship of an infant with two heads, four hands and two legs.
Villagers consider the baby child born on July 4 to Geeta of the Indalpur Village near Shahjahanpur nothing except the reincarnation of Goddess.
Ramesh, father of the twins, said: "On the fourth of this month, this child was born to my wife at 8'o clock. Everyone called her an incarnation of Devi (Goddess), as she has two heads, four hands and two legs. People come here from far off places, and offer money to my child out of respect."
Doctors suggest it could also be Siamese or conjoined twins, who are joined together physically at a particular part of the body. The newborn are conjoined at the torso.
Dr. Ashok Aggarwal, a surgeon with the Ruhelkhand, Medical College, said: "Such kinds of children are called as Siamese baby. They are no incarnation of God. It can be referred to as a mistake done by nature. When two eggs join at the time of fertilization, they grow together after that. They are no incarnation. They should be immediately operated to be separated so that life of both the babies can be saved.
He added that if they are continued to be treated as an incarnation, then life of both babies can come into danger. "Thus, to save their lives, operation is a must."
The news of the unusual child-birth spread very quickly. After initial hesitation and surprise, people started pouring in to have a glimpse of the child.
Elders in the infant's family are also delighted to have been blessed with 'the baby Goddess'.
Ramdevi, grandmother of the twins, said: "I am very happy that an incarnation of Goddess Devi has been born to my daughter-in-law. People are coming from far off places to take their blessings. We are offering prayers to them and performing hymns."
Ramesh, the father has refused any medical help to the twins and is interested in raising the child in its original condition.
Tuesday, July 3, 2007
What is a "successful separation"?
In her seminal book One of Us: Conjoined Twins and the Future of Normal, Dr. Alice Domurat Dreger argues that all surgical separations of conjoined twins are inherently successful. That is, the surgical team always meets its implicit goal of creating separate bodies out of conjoined ones. It's difficult to fault Dr. Dreger's logic here: separation of twins' bodies often continues even if both twins have died on the table, so that they can be symbolically buried in separate caskets.
But for general media purposes, separation surgeries "succeed" if both children have heartbeats when they leave the operating room and "fails" if both do not. Historically, "failure" has often been attributed to the twins themselves in an effort to compose attractive headlines: "Siamese twins fail op" is more compelling than "Surgical team fails op", and the public is more willing to accept failure from unconscious infants than from men and women with advanced degrees.
Separation surgeries also "succeed" if both children are alive at the time a newspaper article is written. Even if the babies die the following day, an intermittent reader would still have "success" forever imprinted in his or her mind in association with conjoined twins and their separation. We want "success" from our medical professionals, after all. If the children die months or years after the family has receded from the limelight, we may never hear of it.
Part of my goal in putting together this journal is to point out the relationship between "human interest" stories and popular perceptions of people with unusual bodies (to steal Dr. Dreger's phraseology again). When we learn to link "Siamese twins separated" with the adverb "successfully", we have positive associations with these types of surgeries. We begin to think that separating conjoined twins is something that always goes according to plan, and that "successful" surgeries never have disastrous results because they are, after all, successful.
I would also like then, to rework the idea of a successful separation surgery so that survival is not the only criterion for success. I define a successful separation surgery as one in which the twins are better off afterwards than they were before. Twins who are linked only superficially can be successfully separated because their bodies are left fully intact (except for a scar) and they no longer have the perceived disability of being conjoined. Twins who are extensively conjoined at the head typically cannot be successfully separated because the cognitive and motor disabilities they face if separated outweigh the perceived disability of being conjoined. Twins who share a heart cannot be successfully separated because, even though they will die either way, if they are not separated then they will die without having to endure the pain of surgery.
Dr. Dreger says that separation surgeries always succeed because they always fulfill the implicit goal of dividing the twins' bodies. But do they always fulfill the stated goals of the surgery? Older surgeons often gave simply "to give the twins a normal life" as their rationale for attempting surgery. Now that we as a society tend to question the use of a blanket term like "normal", surgeries are often performed "to keep them from being stared at", "to give them privacy", "to give them freedom".
Robert Bellah in his book Habits of the Heart (1985) explains the freedom sought by Americans is "the freedom to be left alone". We associate freedom with aloneness, with "me time". Conjoined twins are an affront to our perception of freedom because they are never alone. One often sees words like "shackles", "bound", "chained" (as in Chained for Life) associated with conjoinment. The surgeons who separate conjoined twins are "cutting them free" or "liberating" them. A body which is never alone is not a body which can contain a free person. Separation surgeries, when they succeed in keeping one or both twins alive, do therefore give the twins freedom vis-a-vis the option of privacy.
However, one might also argue that the increased dependence of separated twins on caretakers, the medical system, insurance companies, physical therapists, artificial limbs, wheelchairs, walkers, respirators, colostomies, protective headgear, et cetera, would negate whatever freedom was gained by the twins in surgery. Ambulatory craniopagus twins are often rendered nonambulatory by the brain damage the sustain in surgery. They go from being non-free because they must compromise and choreograph their daily lives, to being not-free because they must be turned, diapered, and spoon-fed. Why can't Bellah's "freedom to be left alone", then, be the freedom to be left together?
What about the goal of preventing gawking and ridicule? A recent episode of the daytime talk show Tyra featured two sets of conjoined twins and one set of formerly conjoined twins, Kala and Katrina, age 18 (note repetition of the word "normal"):
But for general media purposes, separation surgeries "succeed" if both children have heartbeats when they leave the operating room and "fails" if both do not. Historically, "failure" has often been attributed to the twins themselves in an effort to compose attractive headlines: "Siamese twins fail op" is more compelling than "Surgical team fails op", and the public is more willing to accept failure from unconscious infants than from men and women with advanced degrees.
Separation surgeries also "succeed" if both children are alive at the time a newspaper article is written. Even if the babies die the following day, an intermittent reader would still have "success" forever imprinted in his or her mind in association with conjoined twins and their separation. We want "success" from our medical professionals, after all. If the children die months or years after the family has receded from the limelight, we may never hear of it.
Part of my goal in putting together this journal is to point out the relationship between "human interest" stories and popular perceptions of people with unusual bodies (to steal Dr. Dreger's phraseology again). When we learn to link "Siamese twins separated" with the adverb "successfully", we have positive associations with these types of surgeries. We begin to think that separating conjoined twins is something that always goes according to plan, and that "successful" surgeries never have disastrous results because they are, after all, successful.
I would also like then, to rework the idea of a successful separation surgery so that survival is not the only criterion for success. I define a successful separation surgery as one in which the twins are better off afterwards than they were before. Twins who are linked only superficially can be successfully separated because their bodies are left fully intact (except for a scar) and they no longer have the perceived disability of being conjoined. Twins who are extensively conjoined at the head typically cannot be successfully separated because the cognitive and motor disabilities they face if separated outweigh the perceived disability of being conjoined. Twins who share a heart cannot be successfully separated because, even though they will die either way, if they are not separated then they will die without having to endure the pain of surgery.
Dr. Dreger says that separation surgeries always succeed because they always fulfill the implicit goal of dividing the twins' bodies. But do they always fulfill the stated goals of the surgery? Older surgeons often gave simply "to give the twins a normal life" as their rationale for attempting surgery. Now that we as a society tend to question the use of a blanket term like "normal", surgeries are often performed "to keep them from being stared at", "to give them privacy", "to give them freedom".
Robert Bellah in his book Habits of the Heart (1985) explains the freedom sought by Americans is "the freedom to be left alone". We associate freedom with aloneness, with "me time". Conjoined twins are an affront to our perception of freedom because they are never alone. One often sees words like "shackles", "bound", "chained" (as in Chained for Life) associated with conjoinment. The surgeons who separate conjoined twins are "cutting them free" or "liberating" them. A body which is never alone is not a body which can contain a free person. Separation surgeries, when they succeed in keeping one or both twins alive, do therefore give the twins freedom vis-a-vis the option of privacy.
However, one might also argue that the increased dependence of separated twins on caretakers, the medical system, insurance companies, physical therapists, artificial limbs, wheelchairs, walkers, respirators, colostomies, protective headgear, et cetera, would negate whatever freedom was gained by the twins in surgery. Ambulatory craniopagus twins are often rendered nonambulatory by the brain damage the sustain in surgery. They go from being non-free because they must compromise and choreograph their daily lives, to being not-free because they must be turned, diapered, and spoon-fed. Why can't Bellah's "freedom to be left alone", then, be the freedom to be left together?
What about the goal of preventing gawking and ridicule? A recent episode of the daytime talk show Tyra featured two sets of conjoined twins and one set of formerly conjoined twins, Kala and Katrina, age 18 (note repetition of the word "normal"):
Kala and Katrina were seniors in high school and living a normal life. Yet, their lives had not always been so normal. In 1988 when both girls were born, they were conjoined at the chest and side and had four arms and three legs. In 1989, when they girls were 11 months old, a surgery was performed to separate them. Theirs was the first successful surgery of its kind in the United States . There were some complications; one of the girls had a kidney collapsed so doctors had to quickly connect the bladder to the kidney to prevent her from bleeding to death. Kala and Katrina were both fitted with a prosthetic leg when they were separated. As they were growing up, many people made fun of them and called them names. With the help of their hero, their mom, Kala and Katrina overcame all of the obstacles. Now the girls are 18 and live a normal life.Separation surgeries are intended to keep the twins from being stared at and teased. Yet these girls, with their lurching gaits caused by their artificial limbs, were stared at and teased. Another former ischiopagus conjoined twin responded to Kala and Katrina's story that she, too, was stared at and ridiculed as a child. Conjoined twins' bodies are going to be different from other people's, whether they are separated or not. It seems that when separation will produce a lasting disability, as in the case of ischiopagus tripus twins, the stated goal of shielding the children from cruel onlookers is rendered moot.
Veena and Vani (originally posted 10/23/05)
Like Farah and Saba, Veena and Vani are still joined, but their doctors have made efforts to outsource the operation. Recently they contacted University Medical Center in Salt Lake City, Utah, which has separated at least three sets of headjoined twins, but were turned away.
This open letter to the twins' chief caretaker was published in an Indian online newspaper, the Central Chronicle, on October 25, but the link is no longer active.
-----
Dr. Yarlagadda Nayudamma is a pediatric surgeon in India who has made his career of separating conjoined twins. Since the early 90s he has separated three sets of orphaned conjoined twins with fantastic results (i.e., no deaths or lasting disabilities). However, he now hopes to separate 18-month-old Veena and Vani Laxmi, who are also orphans. They are quite closely conjoined at the head (not-quite-vertical craniopagus) but have already learned to walk. Because of the closeness of their conjoinment and the probability of shared brain and circulatory tissue, they are unlikely to survive.
This article appeared this morning on NDTV.com, an Indian news site. Several of the quotes attributed to Dr. Nayudamma and written about the surgery are worrisome to me (try to pick out which ones!)
Here is a copy of a letter I sent to Dr. Nayudamma this morning. I have sent a modified version to four Indian online newspapers as well.
Dear Dr. Nayudamma:
I am a researcher and historian from the United States and I have been following the case of Veena and Vani, conjoined twins who are attached at the head. I am writing to express concern for the girls' futures as well as misgivings about the decision to separate them.
You have been been quoted as saying, "The dictum goes that these children will be mentally retarded. It is a fact. If it is a major fusion in the brain matter or the blood vessels, we have to accept some morbidity in the form of mental retardation." You have also said that, in the event of a shared major blood vessel, it may be necessary to allow one of the twins to die on the operating table.
From a medical ethical standpoint, neither of these outcomes is acceptable. Veena and Vani have shown that they are mentally normal and physically capable children. They can already walk and speak and do not show signs of mental retardation. To make them mentally retarded is decidedly unethical. They are orphans and are likely to be raised in a hospital regardless of whether or not they are separated, but if they are not separated, there is a good chance that they may grow up to be self-sufficient and productive adults. If they are separated, they will become seriously disabled and will remain wards of the state for the remainder of their lives.
That you consider it acceptable to allow one of the twins to die is also worrisome. I have studied several cases in which one twin was allowed to die so that the other might live. In every one of these situations, the twin who was chosen to survive has also died, usually after a prolonged struggle for life. It is not fair to inflict this fate on either of the twins.
I urge you to place these twins' futures before the advancement of your own career, and allow them to live out the rest of their days as happy and healthy conjoined twins.
Sincerely,
[my name]
This open letter to the twins' chief caretaker was published in an Indian online newspaper, the Central Chronicle, on October 25, but the link is no longer active.
-----
Dr. Yarlagadda Nayudamma is a pediatric surgeon in India who has made his career of separating conjoined twins. Since the early 90s he has separated three sets of orphaned conjoined twins with fantastic results (i.e., no deaths or lasting disabilities). However, he now hopes to separate 18-month-old Veena and Vani Laxmi, who are also orphans. They are quite closely conjoined at the head (not-quite-vertical craniopagus) but have already learned to walk. Because of the closeness of their conjoinment and the probability of shared brain and circulatory tissue, they are unlikely to survive.
This article appeared this morning on NDTV.com, an Indian news site. Several of the quotes attributed to Dr. Nayudamma and written about the surgery are worrisome to me (try to pick out which ones!)
Here is a copy of a letter I sent to Dr. Nayudamma this morning. I have sent a modified version to four Indian online newspapers as well.
Dear Dr. Nayudamma:
I am a researcher and historian from the United States and I have been following the case of Veena and Vani, conjoined twins who are attached at the head. I am writing to express concern for the girls' futures as well as misgivings about the decision to separate them.
You have been been quoted as saying, "The dictum goes that these children will be mentally retarded. It is a fact. If it is a major fusion in the brain matter or the blood vessels, we have to accept some morbidity in the form of mental retardation." You have also said that, in the event of a shared major blood vessel, it may be necessary to allow one of the twins to die on the operating table.
From a medical ethical standpoint, neither of these outcomes is acceptable. Veena and Vani have shown that they are mentally normal and physically capable children. They can already walk and speak and do not show signs of mental retardation. To make them mentally retarded is decidedly unethical. They are orphans and are likely to be raised in a hospital regardless of whether or not they are separated, but if they are not separated, there is a good chance that they may grow up to be self-sufficient and productive adults. If they are separated, they will become seriously disabled and will remain wards of the state for the remainder of their lives.
That you consider it acceptable to allow one of the twins to die is also worrisome. I have studied several cases in which one twin was allowed to die so that the other might live. In every one of these situations, the twin who was chosen to survive has also died, usually after a prolonged struggle for life. It is not fair to inflict this fate on either of the twins.
I urge you to place these twins' futures before the advancement of your own career, and allow them to live out the rest of their days as happy and healthy conjoined twins.
Sincerely,
[my name]
Ganga and Jamuna Shrestha (originally posted 9/28/05)
Article from The Scotsman, April 13, 2005:
AN operation to separate two Nepalese twins with conjoined heads was widely hailed as a triumph of medicine, but a prominent neurologist said today, Apr 13, the surgery was a mistake.
Ganga and Jamuna Shrestha, whose conjoined heads were separated in an unprecedented 97 hour operation in Singapore in 2001, now lie sick and virtually immobile in a cramped apartment in Nepal’s capital, Kathmandu. They will be five years old next month.
The girls do not have a hard cover on the tops of their heads, which are protected only by skin and hair, according to the Straits Times newspaper in Singapore.
Singapore doctors had planned a second operation to install a protective lining in the twins’ heads, but no date has been fixed.
They are cared for by their mother and grandparents. Their father went back to their home village two years ago and has not returned.
Jamuna can only pull herself along the ground with her left arm and leg because her right limbs are weak. Her sister, Ganga, is unable to sit up, lift her head or talk.
Dr Lee Wei Ling, daughter of Singapore elder statesman Lee Kuan Yew, said in a letter to the Straits Times that the surgery should not have happened because the children were left with expected disabilities, and their family faces a tremendous burden in caring for them.
“The operation put Singapore on the world map, and the members of the surgical team were hailed as heroes,” wrote Lee Wei Ling, senior consultant of paediatric neurology at the National Neuroscience Institute. “But at the end of the day, to me and to the family, the operation was a mistake.”
Lee was not involved in the surgery at Singapore General Hospital, and said she advised her neurosurgeon not to participate.
“I advised him against it on the basis that even if the operation were a technical success and he gained worldwide fame, his responsibility was the ultimate welfare of the patients,” she said.
“They would have died soon if the operation was not carried out, and the young parents, after a period of grieving, could have carried on with life and probably would have more children who are normal,” Lee wrote.
---------------
As I have argued many times, my main moral objection to separating certain types of conjoined twins is that these doctors, who are professionally obligated to alleviate these children's disabilities (or perceived disabilities), are in fact creating disabilities.
Ganga and Jamuna were born joined at the tops of their heads, their bodies positioned at a 180-degree angle. One of the sisters had a cleft palate. Their heads were so tightly fused that one sister's brain protruded into the skull cavity of the other. It was impossible to tell where one twin ended and the other began. Their situation, exacerbated by malnutrition, seemed dire. However, they were by no means doomed: conservative medical treatment, such as surgery to correct the cleft palate, could have given these girls decent lives as healthy conjoined twins.
But Dr. Goh, the man whose hubris led to the deaths of Iranian law graduates Laleh and Ladan Bijani in 2003, chose to do the impossible. After 96 hours in surgery - a world record - Ganga and Jamuna were wheeled apart.
Although the bluntness of Dr. Lee's words is somewhat off-putting, I agree with her sentiments. This surgery was a mistake, a tragic result of professional greed trumping medical ethics.
I believe that a brain is what makes a person, and if given the choice between living bound at the skull to another person for life, but with full mental faculties, or reduced to a near-vegetative state, I would choose the former. To damage a mentally competent person's brain to this extent is only slightly less abhorrent to me than outright murder. I can only imagine - if Ganga Shrestha is the least bit self-aware - how frustrating it must be to spend her entire existence lying supine, completely dependent upon others, unable to express herself in words. Her situation could have been so easily avoided by allowing these twins to live the way they were born. Either way, the pair would have been disabled; however, as conjoined twins, they could walk, speak, feed and dress themselves, and, depending upon their social situation, obtain an education. This potential has been taken from them, without their consent.
There would be no way to predict, of course, whether Ganga and Jamuna, if allowed to progress as nature intended, and provided they survived, if they would have grown up to be like the Bijani twins, whose divergent personalities eventually led to their surgical suicide, or like the Schappell twins or the McCarther twins, who, despite personal differences, have managed to lead harmonious lives. All six of these women attended college, and live, or lived, independently. These options will never be available to Ganga and Jamuna. They have been reduced to a state of severe impairment at the hands of a man who promised to help them. This, to me, is criminal.
AN operation to separate two Nepalese twins with conjoined heads was widely hailed as a triumph of medicine, but a prominent neurologist said today, Apr 13, the surgery was a mistake.
Ganga and Jamuna Shrestha, whose conjoined heads were separated in an unprecedented 97 hour operation in Singapore in 2001, now lie sick and virtually immobile in a cramped apartment in Nepal’s capital, Kathmandu. They will be five years old next month.
The girls do not have a hard cover on the tops of their heads, which are protected only by skin and hair, according to the Straits Times newspaper in Singapore.
Singapore doctors had planned a second operation to install a protective lining in the twins’ heads, but no date has been fixed.
They are cared for by their mother and grandparents. Their father went back to their home village two years ago and has not returned.
Jamuna can only pull herself along the ground with her left arm and leg because her right limbs are weak. Her sister, Ganga, is unable to sit up, lift her head or talk.
Dr Lee Wei Ling, daughter of Singapore elder statesman Lee Kuan Yew, said in a letter to the Straits Times that the surgery should not have happened because the children were left with expected disabilities, and their family faces a tremendous burden in caring for them.
“The operation put Singapore on the world map, and the members of the surgical team were hailed as heroes,” wrote Lee Wei Ling, senior consultant of paediatric neurology at the National Neuroscience Institute. “But at the end of the day, to me and to the family, the operation was a mistake.”
Lee was not involved in the surgery at Singapore General Hospital, and said she advised her neurosurgeon not to participate.
“I advised him against it on the basis that even if the operation were a technical success and he gained worldwide fame, his responsibility was the ultimate welfare of the patients,” she said.
“They would have died soon if the operation was not carried out, and the young parents, after a period of grieving, could have carried on with life and probably would have more children who are normal,” Lee wrote.
---------------
As I have argued many times, my main moral objection to separating certain types of conjoined twins is that these doctors, who are professionally obligated to alleviate these children's disabilities (or perceived disabilities), are in fact creating disabilities.
Ganga and Jamuna were born joined at the tops of their heads, their bodies positioned at a 180-degree angle. One of the sisters had a cleft palate. Their heads were so tightly fused that one sister's brain protruded into the skull cavity of the other. It was impossible to tell where one twin ended and the other began. Their situation, exacerbated by malnutrition, seemed dire. However, they were by no means doomed: conservative medical treatment, such as surgery to correct the cleft palate, could have given these girls decent lives as healthy conjoined twins.
But Dr. Goh, the man whose hubris led to the deaths of Iranian law graduates Laleh and Ladan Bijani in 2003, chose to do the impossible. After 96 hours in surgery - a world record - Ganga and Jamuna were wheeled apart.
Although the bluntness of Dr. Lee's words is somewhat off-putting, I agree with her sentiments. This surgery was a mistake, a tragic result of professional greed trumping medical ethics.
I believe that a brain is what makes a person, and if given the choice between living bound at the skull to another person for life, but with full mental faculties, or reduced to a near-vegetative state, I would choose the former. To damage a mentally competent person's brain to this extent is only slightly less abhorrent to me than outright murder. I can only imagine - if Ganga Shrestha is the least bit self-aware - how frustrating it must be to spend her entire existence lying supine, completely dependent upon others, unable to express herself in words. Her situation could have been so easily avoided by allowing these twins to live the way they were born. Either way, the pair would have been disabled; however, as conjoined twins, they could walk, speak, feed and dress themselves, and, depending upon their social situation, obtain an education. This potential has been taken from them, without their consent.
There would be no way to predict, of course, whether Ganga and Jamuna, if allowed to progress as nature intended, and provided they survived, if they would have grown up to be like the Bijani twins, whose divergent personalities eventually led to their surgical suicide, or like the Schappell twins or the McCarther twins, who, despite personal differences, have managed to lead harmonious lives. All six of these women attended college, and live, or lived, independently. These options will never be available to Ganga and Jamuna. They have been reduced to a state of severe impairment at the hands of a man who promised to help them. This, to me, is criminal.
Htut Lin and Htut Win (originally posted 6/27/07)
At the time I wrote this article I did not know that David Reimer (John/Joan Theissen) had taken his own life. However, I feel that this sad fact reinforces my argument.
----
Some background: A Toronto paper is doing a feature, "Ten Things Canadians Do Best". I'm sure nine of those things are perfectly legitimate. If "have progressive environmental policies" and "have a very low murder rate" are on there, I'm totally in agreement. But, #1 on the list is "separate conjoined twins".
The reference is to the Hospital for Sick Children in Toronto. They've dealt with a dozen or so sets of conjoined twins since the '60s. The case that garnered the most media attention, however, was the highly experimental 1984 separation of Htut Lin and Htut Win, two-year-old conjoined twins from Burma. The Htut brothers had separate upper bodies by shared three legs (two "good" ones and one that was considered to be vestigial). They also shared one penis and one pair of testicles.
Apparently, gender and its determinants happened to be a hot issue in the medical world around the time the Htut boys were flown from their tiny Burmese village to the Toronto hospital. Conveniently, this surgical team found itself with the perfect opportunity to test hypotheses about the biology and sociology of gender.
So, Htut Win was "made into" a girl. I also found out that Lin didn't get both testicles, only one. The other, it seems, went into the wastebasket. At the time of the operation, the surgical team swore that the sex change was absolutely necessary for the twins' separation - but I find this impossible to believe, given that Win was "castrated" (as one press release states with a chilling nonchalance) and the gonad that was rightly his went to waste. The opportunity existed to preserve Win's maleness, yet it was overlooked in the interest of the experiment.
Back to "Ten Things..." I penned this angry letter to a feature writer with the Toronto paper. She was not a player in the Lin and Win case, and I can only imagine the look on her face when she found my lengthy diatribe in her inbox. As I was hitting "Send", I realize it was probably going to the wrong person, but she's been a good sport about it so far.
Anyway, here's the letter.
******
Dear [journalist],
Having read your article "Twin Peaks", I am writing to convey my shock and distaste that Toronto's Hospital for Sick Children - and, apparently, journalists who give publicity to the hospital - still tout the 1984 surgical separation of Htut Lin and Htut Win, conjoined twins from Burma, as among their greatest accomplishments. On the very basest level, yes, the Htut twins separation was a "success" - that is, both twins left the operating room alive. Yet to give a forced sex reassignment surgery to a two-year-old is medical barbarity at its very worst.
Are you aware of the "John/Joan" case, in which an infant boy lost most of his penis in a botched circumcision and was "turned into" a girl at Maryland's Johns Hopkins Hospital? This was in 1967. Although "she" was dressed in girl's clothes and reared as a girl, "Joan" grew up incredibly conflicted and eventually shed the female identity that had been forced upon "her". John is now a grown man with a wife and family, and he is an activist for the intersexed who speaks against the convention of "normalizing" intersex babies at birth. I urge you to read this article, published in The Rolling Stone in 1997, if you are unfamiliar with this case.
And, are you aware that "John/Joan" is just one of myriad cases where a child whose gender was arbitrarily assigned at birth has rejected his or her chosen gender and come to regret his or her parents' decision to have him or her "normalized"? The book One of Us: Conjoined Twins and the Future of Normal by Dr. Alice Dreger delves more deeply into the practice of surgical normalization of intersex babies, conjoined twins and other people born with unusual bodies. The consensus, among people who are born intersex and even among a growing number of doctors, is that such surgeries are detrimental.
Which brings us to little Htut Win, who would be 23 now. "Her" gender was chosen for her at the age of two, rather than at infancy. Two-year-olds already have the beginnings of an identity, including gender. Win would've known he was a boy at the time the surgery took place. And yet, the Htut twins disappeared back to Burma as the media fanfare accompanying their "successful" separation disappeared as well. We (the public) do not know what became of Win, if "she" is still living as a female, or, like John (aka "Joan") Theissen, he has rejected his false female identify and tried to make a life for himself as a young man. Then there is the problem of the fact that both twins had one leg each and, as I recall, colostomies. The whole purpose of separating the twins was to quell insults and abuse from superstitious, rural Burmese villagers - yet wouldn't a pair of one-legged twins, who couldn't use a toilet, and one of whom was in essence a hermaphrodite, bring just as much suspicion? I do not know much of Burmese culture; perhaps a double-child is seen as a particularly bad omen while two disfigured children can pass unnoticed. Presumably someone at the hospital has contact with the Htut family, but in my years of research I have never found an update on the what became of the twins, especially unfortunate little Win.
The archaic and, dare I say, sexist implications in the surgical team's press releases at the time were shocking to me as well. Htut Lin was chosen to be "the boy" because he was "more aggressive" than Win. Apparently, vaginas are easier to "make" than penises - Win's was made out of a piece of his large intestine, which does not possess the same nervous structure as normal vaginal tissue. Even if Win was able to function sexually, "she" wouldn't have been able to enjoy it.
It was also distressing to learn that a similar surgical abomination took place in Portugal in 1999. Jose and Joao Omar were born in Mozambique sharing a single penis. Their separation led to the renaming of little Joao as "Helena". Again, no update was ever given on how "she" - now a six- or seven-year-old - adjusted to "her" new identity. The Portuguese case was not nearly as publicized as Lin and Win's - perhaps the surgical team knew they had committed an act of unspeakable cruelty against little "Helena".
However, attitudes have changed somewhat, and I am pleased to report that in 2004 a pair of twin boys from Sudan, joined at the back and sharing a penis, were both boys when they left the operating room. I am still saddened that such a fate was not bestowed upon Htut Win or "Helena" Omar.
Thank you for your time.
Sincerely,
[my name]
Austin, Texas
*****
My subsequent exchanges with this writer have cleared up some of my lingering questions about Htut Win. The twins apparently returned to Toronto on several occasions for physical therapy and to receive prosthetic legs. Though the doctors had always planned for Win to receive female hormones, but such treatments were not available in Burma. Thus, Win's long hair, pink ruffled dress and hair ribbons were gone when he returned for a follow-up visit.
At the age of 10, Win told his mother that he was a boy. The parents complied with their son's wishes and chose to let him live as a male.
A recent (2005) update quotes Win as saying that the transition caused him no distress and he did not resent the surgeons' decision. (I can only imagine his sincere forgiveness is due to the fact that he is a Buddhist. An American in the same situation would've buried his doctors in lawsuits.)
The article, however, did point out that Win was feminine in his features and manners. This is no doubt the result of a lack of male hormones at puberty, caused by the boy's castration. Presumably, too, he still has the crude vagina cobbled together from a piece of gut - an operation the surgeons describe so casually you'd think they were talking about sewing a purse. And Win is still registered as a female by the Myanmar government.
*******
I learned some new (to me) details about another case the Toronto doctors worked on. Shiva and Meera Ramkhalawan were brought to the hospital from Trinidad at the age of a few days. They were ischiopagus tetrapus twins, meaning they had four legs but were very closely joined in the lower abdominal region. There was only one set of genitalia. Shiva is a male name, Meera is a female - the parents had been told only one of their twins would get to "keep" the penis, while the other would suffer a fate similar to Win's. However, the Ramkhalawan twins were more fortunate than the Htuts. The surgeons were able to half the penis and reconstruct each of the two halves into a functioning member. Meera was renamed Heera.
That it was possible to save Heera's maleness makes it, in my opinion, even harder to exonerate the Toronto surgical team. So, too, does the fact that the hospital still speaks of the Htut case as an act of profound charity and even heroism. My research on conjoined twins over the years has shown time and again that surgeons such as these do not admit mistakes. The Singapore doctors whose appalling act of hubris ended the lives of Laleh and Ladan Bijani still defend their actions, two years after the tragedy. Johns Hopkins Medical Center has not apologized for killing the infant Lakeburg twins in 1994. Yet the doctors and hospitals involved continue to prosper, proudly displaying even these failed cases on their resumes.
Htut Win has forgiven the men who mutilated his body when he was a child. So why can't I forgive them?
----
Some background: A Toronto paper is doing a feature, "Ten Things Canadians Do Best". I'm sure nine of those things are perfectly legitimate. If "have progressive environmental policies" and "have a very low murder rate" are on there, I'm totally in agreement. But, #1 on the list is "separate conjoined twins".
The reference is to the Hospital for Sick Children in Toronto. They've dealt with a dozen or so sets of conjoined twins since the '60s. The case that garnered the most media attention, however, was the highly experimental 1984 separation of Htut Lin and Htut Win, two-year-old conjoined twins from Burma. The Htut brothers had separate upper bodies by shared three legs (two "good" ones and one that was considered to be vestigial). They also shared one penis and one pair of testicles.
Apparently, gender and its determinants happened to be a hot issue in the medical world around the time the Htut boys were flown from their tiny Burmese village to the Toronto hospital. Conveniently, this surgical team found itself with the perfect opportunity to test hypotheses about the biology and sociology of gender.
So, Htut Win was "made into" a girl. I also found out that Lin didn't get both testicles, only one. The other, it seems, went into the wastebasket. At the time of the operation, the surgical team swore that the sex change was absolutely necessary for the twins' separation - but I find this impossible to believe, given that Win was "castrated" (as one press release states with a chilling nonchalance) and the gonad that was rightly his went to waste. The opportunity existed to preserve Win's maleness, yet it was overlooked in the interest of the experiment.
Back to "Ten Things..." I penned this angry letter to a feature writer with the Toronto paper. She was not a player in the Lin and Win case, and I can only imagine the look on her face when she found my lengthy diatribe in her inbox. As I was hitting "Send", I realize it was probably going to the wrong person, but she's been a good sport about it so far.
Anyway, here's the letter.
******
Dear [journalist],
Having read your article "Twin Peaks", I am writing to convey my shock and distaste that Toronto's Hospital for Sick Children - and, apparently, journalists who give publicity to the hospital - still tout the 1984 surgical separation of Htut Lin and Htut Win, conjoined twins from Burma, as among their greatest accomplishments. On the very basest level, yes, the Htut twins separation was a "success" - that is, both twins left the operating room alive. Yet to give a forced sex reassignment surgery to a two-year-old is medical barbarity at its very worst.
Are you aware of the "John/Joan" case, in which an infant boy lost most of his penis in a botched circumcision and was "turned into" a girl at Maryland's Johns Hopkins Hospital? This was in 1967. Although "she" was dressed in girl's clothes and reared as a girl, "Joan" grew up incredibly conflicted and eventually shed the female identity that had been forced upon "her". John is now a grown man with a wife and family, and he is an activist for the intersexed who speaks against the convention of "normalizing" intersex babies at birth. I urge you to read this article, published in The Rolling Stone in 1997, if you are unfamiliar with this case.
And, are you aware that "John/Joan" is just one of myriad cases where a child whose gender was arbitrarily assigned at birth has rejected his or her chosen gender and come to regret his or her parents' decision to have him or her "normalized"? The book One of Us: Conjoined Twins and the Future of Normal by Dr. Alice Dreger delves more deeply into the practice of surgical normalization of intersex babies, conjoined twins and other people born with unusual bodies. The consensus, among people who are born intersex and even among a growing number of doctors, is that such surgeries are detrimental.
Which brings us to little Htut Win, who would be 23 now. "Her" gender was chosen for her at the age of two, rather than at infancy. Two-year-olds already have the beginnings of an identity, including gender. Win would've known he was a boy at the time the surgery took place. And yet, the Htut twins disappeared back to Burma as the media fanfare accompanying their "successful" separation disappeared as well. We (the public) do not know what became of Win, if "she" is still living as a female, or, like John (aka "Joan") Theissen, he has rejected his false female identify and tried to make a life for himself as a young man. Then there is the problem of the fact that both twins had one leg each and, as I recall, colostomies. The whole purpose of separating the twins was to quell insults and abuse from superstitious, rural Burmese villagers - yet wouldn't a pair of one-legged twins, who couldn't use a toilet, and one of whom was in essence a hermaphrodite, bring just as much suspicion? I do not know much of Burmese culture; perhaps a double-child is seen as a particularly bad omen while two disfigured children can pass unnoticed. Presumably someone at the hospital has contact with the Htut family, but in my years of research I have never found an update on the what became of the twins, especially unfortunate little Win.
The archaic and, dare I say, sexist implications in the surgical team's press releases at the time were shocking to me as well. Htut Lin was chosen to be "the boy" because he was "more aggressive" than Win. Apparently, vaginas are easier to "make" than penises - Win's was made out of a piece of his large intestine, which does not possess the same nervous structure as normal vaginal tissue. Even if Win was able to function sexually, "she" wouldn't have been able to enjoy it.
It was also distressing to learn that a similar surgical abomination took place in Portugal in 1999. Jose and Joao Omar were born in Mozambique sharing a single penis. Their separation led to the renaming of little Joao as "Helena". Again, no update was ever given on how "she" - now a six- or seven-year-old - adjusted to "her" new identity. The Portuguese case was not nearly as publicized as Lin and Win's - perhaps the surgical team knew they had committed an act of unspeakable cruelty against little "Helena".
However, attitudes have changed somewhat, and I am pleased to report that in 2004 a pair of twin boys from Sudan, joined at the back and sharing a penis, were both boys when they left the operating room. I am still saddened that such a fate was not bestowed upon Htut Win or "Helena" Omar.
Thank you for your time.
Sincerely,
[my name]
Austin, Texas
*****
My subsequent exchanges with this writer have cleared up some of my lingering questions about Htut Win. The twins apparently returned to Toronto on several occasions for physical therapy and to receive prosthetic legs. Though the doctors had always planned for Win to receive female hormones, but such treatments were not available in Burma. Thus, Win's long hair, pink ruffled dress and hair ribbons were gone when he returned for a follow-up visit.
At the age of 10, Win told his mother that he was a boy. The parents complied with their son's wishes and chose to let him live as a male.
A recent (2005) update quotes Win as saying that the transition caused him no distress and he did not resent the surgeons' decision. (I can only imagine his sincere forgiveness is due to the fact that he is a Buddhist. An American in the same situation would've buried his doctors in lawsuits.)
The article, however, did point out that Win was feminine in his features and manners. This is no doubt the result of a lack of male hormones at puberty, caused by the boy's castration. Presumably, too, he still has the crude vagina cobbled together from a piece of gut - an operation the surgeons describe so casually you'd think they were talking about sewing a purse. And Win is still registered as a female by the Myanmar government.
*******
I learned some new (to me) details about another case the Toronto doctors worked on. Shiva and Meera Ramkhalawan were brought to the hospital from Trinidad at the age of a few days. They were ischiopagus tetrapus twins, meaning they had four legs but were very closely joined in the lower abdominal region. There was only one set of genitalia. Shiva is a male name, Meera is a female - the parents had been told only one of their twins would get to "keep" the penis, while the other would suffer a fate similar to Win's. However, the Ramkhalawan twins were more fortunate than the Htuts. The surgeons were able to half the penis and reconstruct each of the two halves into a functioning member. Meera was renamed Heera.
That it was possible to save Heera's maleness makes it, in my opinion, even harder to exonerate the Toronto surgical team. So, too, does the fact that the hospital still speaks of the Htut case as an act of profound charity and even heroism. My research on conjoined twins over the years has shown time and again that surgeons such as these do not admit mistakes. The Singapore doctors whose appalling act of hubris ended the lives of Laleh and Ladan Bijani still defend their actions, two years after the tragedy. Johns Hopkins Medical Center has not apologized for killing the infant Lakeburg twins in 1994. Yet the doctors and hospitals involved continue to prosper, proudly displaying even these failed cases on their resumes.
Htut Win has forgiven the men who mutilated his body when he was a child. So why can't I forgive them?
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