History of intersex surgery
Encyclopedia
The history of intersex surgery is intertwined with the development of the specialities of pediatric surgery
, pediatric urology
, and pediatric endocrinology
, with our increasingly refined understanding of sexual differentiation
, with the development of political advocacy groups united by a sexual identity, and in the last decade by doubts as to efficacy, and controversy over when and even whether some procedures should be performed.
Ambiguous genitalia has been considered a birth defect throughout recorded history. Single cases were described by doctors sporadically over the centuries. Some of our modern ideas of birth defects can be traced to French anatomist Isidore Geoffroy Saint-Hilaire
(1805–1861), who pioneered the field of teratology
. Since the 1920s surgeons
have attempted to correct an increasing variety of birth defects. Success has often been partial and surgery is often associated with minor or major, transient or permanent complications. Techniques in all fields of surgery are frequently revised in a quest for higher success rates and lower complication rates. Some surgeons, well aware of the immediate limitations and risks of surgery, feel that significant rates of imperfect outcomes are no scandal (especially for the more severe and disabling birth defects). Instead they see these negative outcomes as a challenge to be overcome by improving the techniques. Genital reconstruction evolved within this tradition, but in the last decade, nearly every aspect of this perspective has been called into question.
Hugh Hampton Young and other surgeons at Johns Hopkins Hospital
in Baltimore and other major university centers. Understanding of intersex
conditions was relatively primitive, based on identifying the type of gonad(s) by palpation or by surgery. Since ability to determine even the type of gonads in infancy was limited, sex of assignment
and rearing were determined mainly by the appearance of the external genitalia. Most of Young's intersex patients were adults seeking his help with physical problems of genital function.
Demand for surgery increased dramatically with better understanding of the condition, congenital adrenal hyperplasia
(CAH), and availability of a new treatment (cortisone) by Lawson Wilkins
, Frederick Bartter and others around 1950. For the first time, severely virilized
infants with this disorder were surviving and could be operated upon. Hormone
assays and karyotyping
to ascertain sex chromosomes, and the availability of testosterone
for treatment led to partial understanding of androgen insensitivity syndrome
. Within a decade, most intersex cases could be accurately diagnosed and their future development predicted with some degree of confidence.
As the number of children with intersex conditions referred to Lawson Wilkins' new pediatric endocrinology clinic at Hopkins increased, it was recognized that doctors "couldn't tell by looking" at the external genitalia, and many errors of diagnosis based on outward appearance had led to anomalous sex assignment
s. Although it seems obvious now that a doctor could not announce to an eight year old boy and his parents that "we have just discovered that you are 'really' a girl, with female chromosomes, and ovaries and uterus inside, and we recommend that you change your sex to match your chromosomes and internal organs," a few such events occurred around the world as doctors and parents tried to make use of new information.
Genital reconstructive surgery at that time was primarily performed on older children and adults. In the early 1950s, it consisted primarily of the ability to remove an unwanted or nonfunctional gonad, to bring a testis into a scrotum
, to repair a milder chordee
or hypospadias
, to widen a vagina
l opening, and to remove a clitoris
.
John Money
, a pediatric clinical psychologist
in the new "Psychohormonal Research Unit" at Hopkins and his partners, John and Joan Hampson, analyzed these assignments and reassignments in an attempt to learn the timing and sources of gender identity
. In most of these patients, gender identity seemed to follow the sex of assignment
and sex of rearing more closely than it did gene
s or hormones. This apparent primacy of social learning
over biology became part of the intellectual underpinning of the feminist movement
of the 1960s. In its application to children with intersex conditions, this thesis that sex
was a many-faceted social construction changed the management of ambiguous genitalia from determination of the baby's real sex (by checking gonads or chromosomes) to determination of what sex should be assigned.
The most common intersex surgery offered in childhood was amputation of the clitoris and widening of the vaginal opening to make a virilized girl with CAH appear less like a boy. However, by the late 1950s surgical techniques for transforming an adult man into a woman were being developed in response to requests for such surgery from transsexuals.
and pediatric urology
at children's hospital
s were universally admired for bringing infant birth defect surgery to new levels of success and safety. These specialized surgeons began to repair wider varieties of birth defects at younger ages with better results. Earlier correction reduced the social "differentness" of a child with a cleft lip, or club foot
, or skull
malformation, or could save the life of an infant with spina bifida
.
Genital corrective surgeries in infancy were justified by (1) the belief that genital surgery is less emotionally traumatic if performed before the age of long-term memory, (2) the assumption that a firm gender identity would be best supported by genitalia that "looked the part," (3) the preference of parents for an "early fix," and (4) the observation of many surgeons that connective tissue, skin, and organs of infants heal faster, with less scarring than those of adolescents and adults. However, one of the drawbacks of surgery in infancy was that it would be decades before outcomes in terms of adult sexual function and gender identity could be assessed.
In North American and European societies, the 1960s saw the beginning of the "sexual revolution
," characterized by increased public interest and discussion about sexuality
, recognition of the value of sexuality in people's lives, the separation of sexuality from reproduction by increasing availability of contraception
, the lessening of many social barriers and inhibitions related to sexual behavior, and social acknowledgment of women's sexuality. It was the era when feminism
made it politically incorrect
to question the social learning theory of gender identity
: the main differences between boys and girls resulted from being taught to be differently. Genes and hormones were thought not to have a strong influence on any aspect of human psychosexual development, gender identity, or sexual orientation
.
The 1970s and 1980s were perhaps the decades when surgery and surgery-supported sex reassignment
were most uncritically accepted in academic opinion, in most children's hospitals, and by society at large. In this context, enhancing the ability of people born with abnormalities of the genitalia to engage in "normal" heterosexual intercourse as adults assumed increasing importance as a goal of medical management. Many felt that a child could not become a happy adult if his penis was too small to insert in a vagina, or if her vagina was too small to receive a penis.
By 1970, surgeons still considered it "easier to make a hole than a pole," but had abandoned "barbaric" clitorectomies in favor of "nerve sparing" clitoral recession and promised orgasm
s when the girls grew up. Pediatric endocrinology
, surgery, child psychology, and sexuality
textbooks recommended sex reassignment
for a male whose penis
was irreparably malformed or "too small to stand to urinate or penetrate a vagina," because the surgeons claimed to be able to construct vaginas where none existed. The majority of these genetic males who were reassigned and surgically converted had cloacal exstrophy
-type malformations or extreme micropenis
(typically less than 1.5 cm). In 1972 John Money
published his influential text (Money, 1972) on the development of gender identity, and reported successful reassignment at age 22 months of a boy (David Reimer
) who had lost his penis to a surgical accident. This experiment proved to not as successful as Money claimed. David Reimer grew up as a girl, but never identified as one. At the age of 14, David decided to live his life as a male, revealing the truth behind Money's 'success'.
. Nevertheless, in the 1980s several factors began to induce a decline in the frequency of certain types of genital surgery. Pediatric endocrinologists had realized that some boys with micropenis
had deficiency of growth hormone
which could be improved with hormones rather than surgery, and over the next decade a couple of reports suggested adult outcome as males was not as bad as expected for the boys with micropenis who had not had surgery. Although textbooks were slower to reflect the change, few reassignment surgeries for isolated micropenis were carried out by the 1990s.
In the 1980s research in both animals and humans began to provide evidence that sex hormones play an important role in early life in promoting or constraining adult sex-dimorphic
sexual behavior and even gender identity. Examples of apparent androgen determination of gender identity in XY people with 5-alpha-reductase deficiency
in the Dominican Republic had been published, along with reports of masculinized behavior in girls with congenital adrenal hyperplasia
(CAH), and unsatisfactory sexual outcomes in adult women with CAH. Many endocrinologists were becoming skeptical that reassignment of genetic males to females was just a matter of learning and appearance, or that the newer clitoral reductions would be more successful than clitoral recessions.
However, feminizing reconstructive surgery continued to be recommended and performed throughout the 1990s on most virilized infant girls with CAH, as well as infants with ambiguity due to androgen insensitivity syndrome
, gonadal dysgenesis
, and some XY infants with severe genital birth defects such as cloacal exstrophy
. Masculinizing reconstructive surgery continued on boys with severe hypospadias and the other conditions outlined above, with continued modifications and refinements intended to reduce unsatisfactory outcomes.
for homosexuality
.
A more abrupt and sweeping re-evaluation of reconstructive genital surgery began about 1997, triggered by a combination of factors. One of the major factors was the rise of patient advocacy groups that expressed dissatisfaction with several aspects of their own past treatments. The Intersex Society of North America
was the most influential and persistent, and has advocated postponing genital surgery until a child is old enough to display a clear gender identity and consent to the surgery. Recommendations from these voices ranged from the unexceptionable (ending shame and secrecy, and providing more accurate information and counseling) to the radical (assigning a third sex or no sex at all to intersex infants). The idea that possession of abnormal genitalia in and of itself does not constitute a medical crisis was stressed.
However, physicians involved in intersex care had embarrassingly little long-term outcome data with which to refute them. In 1997 a patient account was published which could not be ignored. David Reimer
's tragic story, told in both popular and medical publications, was widely interpreted by the public and many physicians as a cautionary tale of medical hubris, of the folly of attempting to foil nature with nurture, of the importance of early hormones on brain development, and the risks and limitations of surgery. Some clinicians proposed a moratorium on pediatric sex reassignment, particularly of undervirilized males as females, due to a lack of data that rearing or appearance of genitalia play a major part in gender identity development. Those clinicians encouraged delaying surgery until elected by adolescents in order to preserve sexual sensitivity.
Similar controversy occurred in Europe and Latin America. In 1999 Colombia
's constitutional court limited the ability of parents to consent to genital surgery for infants with intersex conditions. A number of advocacy groups argue against many forms of genital surgery in childhood. In 2001, British surgeons argued for deferring vaginoplasty until adulthood on grounds of poor outcomes for women who were operated on as infants.
Johns Hopkins Hospital
, the institution that was arguably most responsible for the intersex management paradigm of the previous 4 decades, and the principal target of activist criticism in the late 1990s, was also the first to publish a series of outcome studies. Between 2000 and 2004, the pediatric psychologists, endocrinologists, urologists, and gynecologists associated with Hopkins reviewed all cases of complete androgen insensitivity (Wisniewski, 2000 and 2002), micropenis (Wisniewski, 2001 and 2002), XY ambiguity (Migeon, 2002a and 2002b), XY cloacal exstrophy (Reiner, 2004), and congenital adrenal hyperplasia (Wisniewski, 2004) seen as children and now grown, whether operated upon or not. They attempted to locate and contact all of the individuals to ascertain outcomes by questionnaire, interview, and examination. With a subsequent questionnaire, they asked these people their opinion of their own management and some of the recommendations of recent years (Meyer-Bahlburg, 2004).
To estimate how many major genital reconstructions were performed over approximately the first 25 years of traditional management at North America's first and largest program for intersex surgery:
Perhaps the most striking findings from these reports are:
Exact numbers of patients at other large centers have not been published, but few could have rivaled these numbers. In the early 1980s there were less than 20 children's hospitals in North America with similarly-sized pediatric endocrine clinics, and most had smaller referral areas.
Although surgical sex reassignments (to female) of XY males with unambiguous micropenis or penile injury had been dwindling in the 1990s, few if any have been done since. Accounts of spontaneous self-reassignment since then have also reduced the reassignment to female of several other forms of XY ambiguity and malformation (especially the more intermediate forms of androgen insensitivity syndrome
and idiopathic undervirilization, and non-hormonal birth defects such as cloacal exstrophy
).
Pediatric surgery
Pediatric surgery or paediatric surgery is a subspecialty of surgery involving the surgery of fetuses, infants, children, adolescents, and young adults...
, pediatric urology
Pediatric urology
Pediatric urology is a surgical subspecialty of medicine dealing with the disorders of children's genitourinary systems. Pediatric urologists provide care for both boys and girls ranging from birth to early adult age...
, and pediatric endocrinology
Pediatric endocrinology
Pediatric endocrinology is a medical subspecialty dealing with variations of physical growth and sexual development in childhood, as well as diabetes and other disorders of the endocrine glands....
, with our increasingly refined understanding of sexual differentiation
Sexual differentiation
Sexual differentiation is the process of development of the differences between males and females from an undifferentiated zygote...
, with the development of political advocacy groups united by a sexual identity, and in the last decade by doubts as to efficacy, and controversy over when and even whether some procedures should be performed.
Ambiguous genitalia has been considered a birth defect throughout recorded history. Single cases were described by doctors sporadically over the centuries. Some of our modern ideas of birth defects can be traced to French anatomist Isidore Geoffroy Saint-Hilaire
Isidore Geoffroy Saint-Hilaire
Isidore Geoffroy Saint-Hilaire was a French zoologist and an authority on deviation from normal structure. He coined the term ethology.He was born in Paris, the son of Étienne Geoffroy Saint-Hilaire...
(1805–1861), who pioneered the field of teratology
Teratology
Teratology is the study of abnormalities of physiological development. It is often thought of as the study of human birth defects, but it is much broader than that, taking in other non-birth developmental stages, including puberty; and other non-human life forms, including plants.- Etymology :The...
. Since the 1920s surgeons
Surgery
Surgery is an ancient medical specialty that uses operative manual and instrumental techniques on a patient to investigate and/or treat a pathological condition such as disease or injury, or to help improve bodily function or appearance.An act of performing surgery may be called a surgical...
have attempted to correct an increasing variety of birth defects. Success has often been partial and surgery is often associated with minor or major, transient or permanent complications. Techniques in all fields of surgery are frequently revised in a quest for higher success rates and lower complication rates. Some surgeons, well aware of the immediate limitations and risks of surgery, feel that significant rates of imperfect outcomes are no scandal (especially for the more severe and disabling birth defects). Instead they see these negative outcomes as a challenge to be overcome by improving the techniques. Genital reconstruction evolved within this tradition, but in the last decade, nearly every aspect of this perspective has been called into question.
Surgical pioneering and constructed gender
Genital reconstructive surgery was pioneered between 1930 and 1960 by urologistUrology
Urology is the medical and surgical specialty that focuses on the urinary tracts of males and females, and on the reproductive system of males. Medical professionals specializing in the field of urology are called urologists and are trained to diagnose, treat, and manage patients with urological...
Hugh Hampton Young and other surgeons at Johns Hopkins Hospital
Johns Hopkins Hospital
The Johns Hopkins Hospital is the teaching hospital and biomedical research facility of Johns Hopkins University School of Medicine, located in Baltimore, Maryland . It was founded using money from a bequest by philanthropist Johns Hopkins...
in Baltimore and other major university centers. Understanding of intersex
Intersex
Intersex, in humans and other animals, is the presence of intermediate or atypical combinations of physical features that usually distinguish female from male...
conditions was relatively primitive, based on identifying the type of gonad(s) by palpation or by surgery. Since ability to determine even the type of gonads in infancy was limited, sex of assignment
Sex assignment
Sex assignment refers to the assigning of the biological sex at the birth of a baby. In the majority of births, a relative, midwife, or physician inspects the genitalia when the baby is delivered, sees ordinary male or female genitalia, and declares, "it's a girl" or "it's a boy" without the...
and rearing were determined mainly by the appearance of the external genitalia. Most of Young's intersex patients were adults seeking his help with physical problems of genital function.
Demand for surgery increased dramatically with better understanding of the condition, congenital adrenal hyperplasia
Congenital adrenal hyperplasia
Congenital adrenal hyperplasia refers to any of several autosomal recessive diseases resulting from mutations of genes for enzymes mediating the biochemical steps of production of cortisol from cholesterol by the adrenal glands ....
(CAH), and availability of a new treatment (cortisone) by Lawson Wilkins
Lawson Wilkins
-References:...
, Frederick Bartter and others around 1950. For the first time, severely virilized
Virilization
In biology and medicine, virilization refers to the biological development of sex differences, changes that make a male body different from a female body. Most of the changes of virilization are produced by androgens...
infants with this disorder were surviving and could be operated upon. Hormone
Hormone
A hormone is a chemical released by a cell or a gland in one part of the body that sends out messages that affect cells in other parts of the organism. Only a small amount of hormone is required to alter cell metabolism. In essence, it is a chemical messenger that transports a signal from one...
assays and karyotyping
Karyotype
A karyotype is the number and appearance of chromosomes in the nucleus of an eukaryotic cell. The term is also used for the complete set of chromosomes in a species, or an individual organism.p28...
to ascertain sex chromosomes, and the availability of testosterone
Testosterone
Testosterone is a steroid hormone from the androgen group and is found in mammals, reptiles, birds, and other vertebrates. In mammals, testosterone is primarily secreted in the testes of males and the ovaries of females, although small amounts are also secreted by the adrenal glands...
for treatment led to partial understanding of androgen insensitivity syndrome
Androgen insensitivity syndrome
Androgen insensitivity syndrome is a condition that results in the partial or complete inability of the cell to respond to androgens. The unresponsiveness of the cell to the presence of androgenic hormones can impair or prevent the masculinization of male genitalia in the developing fetus, as...
. Within a decade, most intersex cases could be accurately diagnosed and their future development predicted with some degree of confidence.
As the number of children with intersex conditions referred to Lawson Wilkins' new pediatric endocrinology clinic at Hopkins increased, it was recognized that doctors "couldn't tell by looking" at the external genitalia, and many errors of diagnosis based on outward appearance had led to anomalous sex assignment
Sex assignment
Sex assignment refers to the assigning of the biological sex at the birth of a baby. In the majority of births, a relative, midwife, or physician inspects the genitalia when the baby is delivered, sees ordinary male or female genitalia, and declares, "it's a girl" or "it's a boy" without the...
s. Although it seems obvious now that a doctor could not announce to an eight year old boy and his parents that "we have just discovered that you are 'really' a girl, with female chromosomes, and ovaries and uterus inside, and we recommend that you change your sex to match your chromosomes and internal organs," a few such events occurred around the world as doctors and parents tried to make use of new information.
Genital reconstructive surgery at that time was primarily performed on older children and adults. In the early 1950s, it consisted primarily of the ability to remove an unwanted or nonfunctional gonad, to bring a testis into a scrotum
Scrotum
In some male mammals the scrotum is a dual-chambered protuberance of skin and muscle containing the testicles and divided by a septum. It is an extension of the perineum, and is located between the penis and anus. In humans and some other mammals, the base of the scrotum becomes covered with curly...
, to repair a milder chordee
Chordee
Chordee is a condition in which the head of the penis curves downward or upward, at the junction of the head and shaft of the penis. The curvature is usually most obvious during erection, but resistance to straightening is often apparent in the flaccid state as well. In many cases but not all,...
or hypospadias
Hypospadias
Hypospadias is a birth defect of the urethra in the male that involves an abnormally placed urinary meatus...
, to widen a vagina
Vagina
The vagina is a fibromuscular tubular tract leading from the uterus to the exterior of the body in female placental mammals and marsupials, or to the cloaca in female birds, monotremes, and some reptiles. Female insects and other invertebrates also have a vagina, which is the terminal part of the...
l opening, and to remove a clitoris
Clitoris
The clitoris is a sexual organ that is present only in female mammals. In humans, the visible button-like portion is located near the anterior junction of the labia minora, above the opening of the urethra and vagina. Unlike the penis, which is homologous to the clitoris, the clitoris does not...
.
John Money
John Money
John William Money was a psychologist, sexologist and author, specializing in research into sexual identity and biology of gender...
, a pediatric clinical psychologist
Clinical psychology
Clinical psychology is an integration of science, theory and clinical knowledge for the purpose of understanding, preventing, and relieving psychologically-based distress or dysfunction and to promote subjective well-being and personal development...
in the new "Psychohormonal Research Unit" at Hopkins and his partners, John and Joan Hampson, analyzed these assignments and reassignments in an attempt to learn the timing and sources of gender identity
Gender identity
A gender identity is the way in which an individual self-identifies with a gender category, for example, as being either a man or a woman, or in some cases being neither, which can be distinct from biological sex. Basic gender identity is usually formed by age three and is extremely difficult to...
. In most of these patients, gender identity seemed to follow the sex of assignment
Sex assignment
Sex assignment refers to the assigning of the biological sex at the birth of a baby. In the majority of births, a relative, midwife, or physician inspects the genitalia when the baby is delivered, sees ordinary male or female genitalia, and declares, "it's a girl" or "it's a boy" without the...
and sex of rearing more closely than it did gene
Gene
A gene is a molecular unit of heredity of a living organism. It is a name given to some stretches of DNA and RNA that code for a type of protein or for an RNA chain that has a function in the organism. Living beings depend on genes, as they specify all proteins and functional RNA chains...
s or hormones. This apparent primacy of social learning
Social learning
Social learning may refer to:* Observational learning , learning that occurs as a function of observing, retaining and replicating behavior observed in ones environment or other people....
over biology became part of the intellectual underpinning of the feminist movement
Feminism
Feminism is a collection of movements aimed at defining, establishing, and defending equal political, economic, and social rights and equal opportunities for women. Its concepts overlap with those of women's rights...
of the 1960s. In its application to children with intersex conditions, this thesis that sex
Sex
In biology, sex is a process of combining and mixing genetic traits, often resulting in the specialization of organisms into a male or female variety . Sexual reproduction involves combining specialized cells to form offspring that inherit traits from both parents...
was a many-faceted social construction changed the management of ambiguous genitalia from determination of the baby's real sex (by checking gonads or chromosomes) to determination of what sex should be assigned.
The most common intersex surgery offered in childhood was amputation of the clitoris and widening of the vaginal opening to make a virilized girl with CAH appear less like a boy. However, by the late 1950s surgical techniques for transforming an adult man into a woman were being developed in response to requests for such surgery from transsexuals.
Rise of infant surgery and "nurture over nature"
By the 1960s, the young specialties of pediatric surgeryPediatric surgery
Pediatric surgery or paediatric surgery is a subspecialty of surgery involving the surgery of fetuses, infants, children, adolescents, and young adults...
and pediatric urology
Pediatric urology
Pediatric urology is a surgical subspecialty of medicine dealing with the disorders of children's genitourinary systems. Pediatric urologists provide care for both boys and girls ranging from birth to early adult age...
at children's hospital
Children's hospital
A children's hospital is a hospital which offers its services exclusively to children . The number of children's hospitals proliferated in the 20th century, as pediatric medical and surgical specialties separated from internal medicine and adult surgical specialties...
s were universally admired for bringing infant birth defect surgery to new levels of success and safety. These specialized surgeons began to repair wider varieties of birth defects at younger ages with better results. Earlier correction reduced the social "differentness" of a child with a cleft lip, or club foot
Club foot
A club foot, or congenital talipes equinovarus , is a congenital deformity involving one foot or both. The affected foot appears rotated internally at the ankle. TEV is classified into 2 groups: Postural TEV or Structural TEV....
, or skull
Human skull
The human skull is a bony structure, skeleton, that is in the human head and which supports the structures of the face and forms a cavity for the brain.In humans, the adult skull is normally made up of 22 bones...
malformation, or could save the life of an infant with spina bifida
Spina bifida
Spina bifida is a developmental congenital disorder caused by the incomplete closing of the embryonic neural tube. Some vertebrae overlying the spinal cord are not fully formed and remain unfused and open. If the opening is large enough, this allows a portion of the spinal cord to protrude through...
.
Genital corrective surgeries in infancy were justified by (1) the belief that genital surgery is less emotionally traumatic if performed before the age of long-term memory, (2) the assumption that a firm gender identity would be best supported by genitalia that "looked the part," (3) the preference of parents for an "early fix," and (4) the observation of many surgeons that connective tissue, skin, and organs of infants heal faster, with less scarring than those of adolescents and adults. However, one of the drawbacks of surgery in infancy was that it would be decades before outcomes in terms of adult sexual function and gender identity could be assessed.
In North American and European societies, the 1960s saw the beginning of the "sexual revolution
Sexual revolution
The sexual revolution was a social movement that challenged traditional codes of behavior related to sexuality and interpersonal relationships throughout the Western world from the 1960s into the 1980s...
," characterized by increased public interest and discussion about sexuality
Human sexuality
Human sexuality is the awareness of gender differences, and the capacity to have erotic experiences and responses. Human sexuality can also be described as the way someone is sexually attracted to another person whether it is to opposite sexes , to the same sex , to either sexes , or not being...
, recognition of the value of sexuality in people's lives, the separation of sexuality from reproduction by increasing availability of contraception
Contraception
Contraception is the prevention of the fusion of gametes during or after sexual activity. The term contraception is a contraction of contra, which means against, and the word conception, meaning fertilization...
, the lessening of many social barriers and inhibitions related to sexual behavior, and social acknowledgment of women's sexuality. It was the era when feminism
Feminism
Feminism is a collection of movements aimed at defining, establishing, and defending equal political, economic, and social rights and equal opportunities for women. Its concepts overlap with those of women's rights...
made it politically incorrect
Political correctness
Political correctness is a term which denotes language, ideas, policies, and behavior seen as seeking to minimize social and institutional offense in occupational, gender, racial, cultural, sexual orientation, certain other religions, beliefs or ideologies, disability, and age-related contexts,...
to question the social learning theory of gender identity
Gender identity
A gender identity is the way in which an individual self-identifies with a gender category, for example, as being either a man or a woman, or in some cases being neither, which can be distinct from biological sex. Basic gender identity is usually formed by age three and is extremely difficult to...
: the main differences between boys and girls resulted from being taught to be differently. Genes and hormones were thought not to have a strong influence on any aspect of human psychosexual development, gender identity, or sexual orientation
Sexual orientation
Sexual orientation describes a pattern of emotional, romantic, or sexual attractions to the opposite sex, the same sex, both, or neither, and the genders that accompany them. By the convention of organized researchers, these attractions are subsumed under heterosexuality, homosexuality,...
.
The 1970s and 1980s were perhaps the decades when surgery and surgery-supported sex reassignment
Sex reassignment
Sex reassignment may refer to:* Sex reassignment, changing the sex assignment of an infant or child by parents and doctors, usually because of fuller understanding of an intersex condition....
were most uncritically accepted in academic opinion, in most children's hospitals, and by society at large. In this context, enhancing the ability of people born with abnormalities of the genitalia to engage in "normal" heterosexual intercourse as adults assumed increasing importance as a goal of medical management. Many felt that a child could not become a happy adult if his penis was too small to insert in a vagina, or if her vagina was too small to receive a penis.
By 1970, surgeons still considered it "easier to make a hole than a pole," but had abandoned "barbaric" clitorectomies in favor of "nerve sparing" clitoral recession and promised orgasm
Orgasm
Orgasm is the peak of the plateau phase of the sexual response cycle, characterized by an intense sensation of pleasure...
s when the girls grew up. Pediatric endocrinology
Pediatric endocrinology
Pediatric endocrinology is a medical subspecialty dealing with variations of physical growth and sexual development in childhood, as well as diabetes and other disorders of the endocrine glands....
, surgery, child psychology, and sexuality
Human sexuality
Human sexuality is the awareness of gender differences, and the capacity to have erotic experiences and responses. Human sexuality can also be described as the way someone is sexually attracted to another person whether it is to opposite sexes , to the same sex , to either sexes , or not being...
textbooks recommended sex reassignment
Sex reassignment
Sex reassignment may refer to:* Sex reassignment, changing the sex assignment of an infant or child by parents and doctors, usually because of fuller understanding of an intersex condition....
for a male whose penis
Penis
The penis is a biological feature of male animals including both vertebrates and invertebrates...
was irreparably malformed or "too small to stand to urinate or penetrate a vagina," because the surgeons claimed to be able to construct vaginas where none existed. The majority of these genetic males who were reassigned and surgically converted had cloacal exstrophy
Cloacal exstrophy
Cloacal exstrophy is a severe birth defect wherein much of the abdominal organs are exposed. It often causes the splitting of both male and female genitalia , and the anus is occasionally sealed.Cloacal exstrophy is an extremely rare birth defect, present in only one in 200,000 pregnancies - one...
-type malformations or extreme micropenis
Micropenis
Micropenis is an unusually small penis. A common criterion is a dorsal erect penile length of at least 2.5 standard deviations smaller than the mean human penis size. The condition is usually recognized shortly after birth...
(typically less than 1.5 cm). In 1972 John Money
John Money
John William Money was a psychologist, sexologist and author, specializing in research into sexual identity and biology of gender...
published his influential text (Money, 1972) on the development of gender identity, and reported successful reassignment at age 22 months of a boy (David Reimer
David Reimer
David Reimer was a Canadian man who was born as a healthy male, but was sexually reassigned and raised as female after his penis was accidentally destroyed during circumcision. Psychologist John Money oversaw the case and reported the reassignment as successful, and as evidence that gender...
) who had lost his penis to a surgical accident. This experiment proved to not as successful as Money claimed. David Reimer grew up as a girl, but never identified as one. At the age of 14, David decided to live his life as a male, revealing the truth behind Money's 'success'.
Complications arise
Throughout the 1980s pediatric surgery textbooks recommended female assignment and feminizing reconstructive surgery for XY infants with a severely inadequate phallusPhallus
A phallus is an erect penis, a penis-shaped object such as a dildo, or a mimetic image of an erect penis. Any object that symbolically resembles a penis may also be referred to as a phallus; however, such objects are more often referred to as being phallic...
. Nevertheless, in the 1980s several factors began to induce a decline in the frequency of certain types of genital surgery. Pediatric endocrinologists had realized that some boys with micropenis
Micropenis
Micropenis is an unusually small penis. A common criterion is a dorsal erect penile length of at least 2.5 standard deviations smaller than the mean human penis size. The condition is usually recognized shortly after birth...
had deficiency of growth hormone
Growth hormone
Growth hormone is a peptide hormone that stimulates growth, cell reproduction and regeneration in humans and other animals. Growth hormone is a 191-amino acid, single-chain polypeptide that is synthesized, stored, and secreted by the somatotroph cells within the lateral wings of the anterior...
which could be improved with hormones rather than surgery, and over the next decade a couple of reports suggested adult outcome as males was not as bad as expected for the boys with micropenis who had not had surgery. Although textbooks were slower to reflect the change, few reassignment surgeries for isolated micropenis were carried out by the 1990s.
In the 1980s research in both animals and humans began to provide evidence that sex hormones play an important role in early life in promoting or constraining adult sex-dimorphic
Sexual dimorphism
Sexual dimorphism is a phenotypic difference between males and females of the same species. Examples of such differences include differences in morphology, ornamentation, and behavior.-Examples:-Ornamentation / coloration:...
sexual behavior and even gender identity. Examples of apparent androgen determination of gender identity in XY people with 5-alpha-reductase deficiency
5-alpha-reductase deficiency
5-Alpha-reductase deficiency is an autosomal recessive intersex condition caused by a mutation of the 5-alpha reductase type 2 gene.-Normal function:...
in the Dominican Republic had been published, along with reports of masculinized behavior in girls with congenital adrenal hyperplasia
Congenital adrenal hyperplasia
Congenital adrenal hyperplasia refers to any of several autosomal recessive diseases resulting from mutations of genes for enzymes mediating the biochemical steps of production of cortisol from cholesterol by the adrenal glands ....
(CAH), and unsatisfactory sexual outcomes in adult women with CAH. Many endocrinologists were becoming skeptical that reassignment of genetic males to females was just a matter of learning and appearance, or that the newer clitoral reductions would be more successful than clitoral recessions.
However, feminizing reconstructive surgery continued to be recommended and performed throughout the 1990s on most virilized infant girls with CAH, as well as infants with ambiguity due to androgen insensitivity syndrome
Androgen insensitivity syndrome
Androgen insensitivity syndrome is a condition that results in the partial or complete inability of the cell to respond to androgens. The unresponsiveness of the cell to the presence of androgenic hormones can impair or prevent the masculinization of male genitalia in the developing fetus, as...
, gonadal dysgenesis
Gonadal dysgenesis
Gonadal dysgenesis is a term used to describe multiple reproductive system development disorders. They are conditions of genetic origin. It is characterized by a progressive loss of primordial germ cells on the developing gonads of an embryo....
, and some XY infants with severe genital birth defects such as cloacal exstrophy
Cloacal exstrophy
Cloacal exstrophy is a severe birth defect wherein much of the abdominal organs are exposed. It often causes the splitting of both male and female genitalia , and the anus is occasionally sealed.Cloacal exstrophy is an extremely rare birth defect, present in only one in 200,000 pregnancies - one...
. Masculinizing reconstructive surgery continued on boys with severe hypospadias and the other conditions outlined above, with continued modifications and refinements intended to reduce unsatisfactory outcomes.
Infant surgery falls from favor
By 1990, biological factors were being reported for a wide variety of human behaviors and personality characteristics. The idea that culture accounted for all the differences between men and women seemed as obsolete as psychotherapyPsychotherapy
Psychotherapy is a general term referring to any form of therapeutic interaction or treatment contracted between a trained professional and a client or patient; family, couple or group...
for homosexuality
Homosexuality
Homosexuality is romantic or sexual attraction or behavior between members of the same sex or gender. As a sexual orientation, homosexuality refers to "an enduring pattern of or disposition to experience sexual, affectional, or romantic attractions" primarily or exclusively to people of the same...
.
A more abrupt and sweeping re-evaluation of reconstructive genital surgery began about 1997, triggered by a combination of factors. One of the major factors was the rise of patient advocacy groups that expressed dissatisfaction with several aspects of their own past treatments. The Intersex Society of North America
Intersex Society of North America
The Intersex Society of North America was a non-profit advocacy group founded in 1993 by Cheryl Chase to represent the interest of intersex people. Their objective was to end shame, secrecy, and unwanted genital surgeries...
was the most influential and persistent, and has advocated postponing genital surgery until a child is old enough to display a clear gender identity and consent to the surgery. Recommendations from these voices ranged from the unexceptionable (ending shame and secrecy, and providing more accurate information and counseling) to the radical (assigning a third sex or no sex at all to intersex infants). The idea that possession of abnormal genitalia in and of itself does not constitute a medical crisis was stressed.
However, physicians involved in intersex care had embarrassingly little long-term outcome data with which to refute them. In 1997 a patient account was published which could not be ignored. David Reimer
David Reimer
David Reimer was a Canadian man who was born as a healthy male, but was sexually reassigned and raised as female after his penis was accidentally destroyed during circumcision. Psychologist John Money oversaw the case and reported the reassignment as successful, and as evidence that gender...
's tragic story, told in both popular and medical publications, was widely interpreted by the public and many physicians as a cautionary tale of medical hubris, of the folly of attempting to foil nature with nurture, of the importance of early hormones on brain development, and the risks and limitations of surgery. Some clinicians proposed a moratorium on pediatric sex reassignment, particularly of undervirilized males as females, due to a lack of data that rearing or appearance of genitalia play a major part in gender identity development. Those clinicians encouraged delaying surgery until elected by adolescents in order to preserve sexual sensitivity.
Similar controversy occurred in Europe and Latin America. In 1999 Colombia
Colombia
Colombia, officially the Republic of Colombia , is a unitary constitutional republic comprising thirty-two departments. The country is located in northwestern South America, bordered to the east by Venezuela and Brazil; to the south by Ecuador and Peru; to the north by the Caribbean Sea; to the...
's constitutional court limited the ability of parents to consent to genital surgery for infants with intersex conditions. A number of advocacy groups argue against many forms of genital surgery in childhood. In 2001, British surgeons argued for deferring vaginoplasty until adulthood on grounds of poor outcomes for women who were operated on as infants.
Outcomes and statistics
Regardless of the representativeness of the advocacy groups, the doctors began to listen. Within a short time re-evaluation of intersex management was a major topic in the journals and the meetings of the pediatric endocrinologists and urologists. There was no international "registry" of genital reconstructive surgery. Most cases of this type of surgery were being carried out in a relatively small number of centers. Several of the larger institutions embarked on individual and collaborative retrospective outcome studies, attempting to contact all individuals treated as children in their institutions since the 1960s. A large, collaborative, retrospective survey, the North American Task Force on Intersexuality, was organized, with input from patient advocates.Johns Hopkins Hospital
Johns Hopkins Hospital
The Johns Hopkins Hospital is the teaching hospital and biomedical research facility of Johns Hopkins University School of Medicine, located in Baltimore, Maryland . It was founded using money from a bequest by philanthropist Johns Hopkins...
, the institution that was arguably most responsible for the intersex management paradigm of the previous 4 decades, and the principal target of activist criticism in the late 1990s, was also the first to publish a series of outcome studies. Between 2000 and 2004, the pediatric psychologists, endocrinologists, urologists, and gynecologists associated with Hopkins reviewed all cases of complete androgen insensitivity (Wisniewski, 2000 and 2002), micropenis (Wisniewski, 2001 and 2002), XY ambiguity (Migeon, 2002a and 2002b), XY cloacal exstrophy (Reiner, 2004), and congenital adrenal hyperplasia (Wisniewski, 2004) seen as children and now grown, whether operated upon or not. They attempted to locate and contact all of the individuals to ascertain outcomes by questionnaire, interview, and examination. With a subsequent questionnaire, they asked these people their opinion of their own management and some of the recommendations of recent years (Meyer-Bahlburg, 2004).
To estimate how many major genital reconstructions were performed over approximately the first 25 years of traditional management at North America's first and largest program for intersex surgery:
- 134 XX infants with virilizing congenital adrenal hyperplasiaCongenital adrenal hyperplasiaCongenital adrenal hyperplasia refers to any of several autosomal recessive diseases resulting from mutations of genes for enzymes mediating the biochemical steps of production of cortisol from cholesterol by the adrenal glands ....
raised as girls. About 90% had had surgery in childhood. - 20 XY infants with completely female genitalia due to complete androgen insensitivity syndromeAndrogen insensitivity syndromeAndrogen insensitivity syndrome is a condition that results in the partial or complete inability of the cell to respond to androgens. The unresponsiveness of the cell to the presence of androgenic hormones can impair or prevent the masculinization of male genitalia in the developing fetus, as...
, raised as girls. All had gonadectomy; some had vaginoplasties. - 6 XY infants with completely female genitalia due to Swyer syndromeSwyer syndromeSwyer syndrome, or XY gonadal dysgenesis, is a type of hypogonadism in a person whose karyotype is 46,XY. The person is externally female with streak gonads, and left untreated, will not experience puberty...
, raised as girls, generally diagnosed in adolescence. Most had surgery, usually exploration and gonadectomy. - 114 XY infants with severely ambiguous genitalia due to a variety of conditions; 64 were raised as males and 50 were raised as females. All had reconstructive surgeries.
- 43 XY infants with micropenisMicropenisMicropenis is an unusually small penis. A common criterion is a dorsal erect penile length of at least 2.5 standard deviations smaller than the mean human penis size. The condition is usually recognized shortly after birth...
; 31 were raised as males, 12 were reassigned as female and underwent reconstructive surgery. - 14 XY infants with cloacal exstrophyCloacal exstrophyCloacal exstrophy is a severe birth defect wherein much of the abdominal organs are exposed. It often causes the splitting of both male and female genitalia , and the anus is occasionally sealed.Cloacal exstrophy is an extremely rare birth defect, present in only one in 200,000 pregnancies - one...
raised as females; all had surgical reconstruction.
Perhaps the most striking findings from these reports are:
- the relatively small numbers of patients who actually underwent the more controversial procedures even in one of the largest centers in the world
- the relatively high proportion of former patients who were located and willing to participate
- the small differences in terms of outcomes, problems, and satisfaction between groups of people with the same conditions treated very differently.
Exact numbers of patients at other large centers have not been published, but few could have rivaled these numbers. In the early 1980s there were less than 20 children's hospitals in North America with similarly-sized pediatric endocrine clinics, and most had smaller referral areas.
Controversy
The goals of surgery, outlined at the beginning of this article have not changed, but some types of surgery have been discontinued. The primary ongoing controversy surrounds timing of feminizing surgery for virilized girls with CAH.Although surgical sex reassignments (to female) of XY males with unambiguous micropenis or penile injury had been dwindling in the 1990s, few if any have been done since. Accounts of spontaneous self-reassignment since then have also reduced the reassignment to female of several other forms of XY ambiguity and malformation (especially the more intermediate forms of androgen insensitivity syndrome
Androgen insensitivity syndrome
Androgen insensitivity syndrome is a condition that results in the partial or complete inability of the cell to respond to androgens. The unresponsiveness of the cell to the presence of androgenic hormones can impair or prevent the masculinization of male genitalia in the developing fetus, as...
and idiopathic undervirilization, and non-hormonal birth defects such as cloacal exstrophy
Cloacal exstrophy
Cloacal exstrophy is a severe birth defect wherein much of the abdominal organs are exposed. It often causes the splitting of both male and female genitalia , and the anus is occasionally sealed.Cloacal exstrophy is an extremely rare birth defect, present in only one in 200,000 pregnancies - one...
).
See also
- Congenital adrenal hyperplasia due to 21-hydroxylase deficiencyCongenital adrenal hyperplasia due to 21-hydroxylase deficiencyCongenital adrenal hyperplasia due to 21-hydroxylase deficiency , in all its forms, accounts for over 95% of diagnosed cases of congenital adrenal hyperplasia, and "CAH" in most contexts refers to 21-hydroxylase deficiency...
- Intersex Society of North AmericaIntersex Society of North AmericaThe Intersex Society of North America was a non-profit advocacy group founded in 1993 by Cheryl Chase to represent the interest of intersex people. Their objective was to end shame, secrecy, and unwanted genital surgeries...
is an excellent source of information supporting one side of the controversy. - Sex reassignment surgerySex reassignment surgerySex reassignment surgery is a term for the surgical procedures by which a person's physical appearance and function of their existing sexual characteristics are altered to resemble...