Gendercare Gender Clinic Debate
We are
starting now (2003) a discussion or Debate about Gender Identity (GI)
and Gender Dysphorias (GD), mainly related to intersex (Isex), but not only for
intersex. That discussion started some time ago,
between Tom Mazur, PsyD, the chairman of the HBIGDA Intersex Committee, and myself,
That discussion started as Tom one day sent me a copy of one paper of him and
co-workers about one very disturbing situation of intersex
(one aphallia situation-a boy with testicles and no
penis), asking what I would do if I had a case like that. And I answered him,
with my general ideas about that subject.
Up until today, Tom doesn't answer me my commentaries (he has a lot of work to
do), but surely as soon as possible he will answer, and we will publish his
answer, and we will continue exchanging our ideas.
Now I asked him: may I, Tom, publish our debate in Gendercare? He answered me:
yes!
Could I suggest others to also say us their opinions? He answered me: yes!
So, here we are, with his paper (in black letters), my first answers (in gray
ones), and waiting more answers from Tom.
Below is one form. If you would like to send us your opinions about these
subjects, give us your name, email that we could be in touch with you if
necessary, your professional status (MD,MS,PsyD,BS,PhD,
or other, etc), personal gender status (no gender problem, gender dysphoric, intersex, transsexual,
etc), and your opinion. We will publish the serious opinions, and those that
really show interest in that subject.Nothing
aggressive will be published.
Thank you!
Dr.Torres/Gendercare
Debate:
Gender Identity (GI) and Intersex (Isex): the possibility of the generation of a Gender
Dysphoria (GD) situation.
Hi Tom!
I will try to put,
in the middle of the text,
my commentaries. My English is not
good, so pardon me a lot of English serious
mistakes.
My comments will be always
in gray, I will show you my ideas
about each particular comment or phrase,
you wrote or your co-workers
did.
I hope, after it, you will understand
really what is my idea about
that theme.
First of all, I think it is not a medical, nor a psychological, nor social or familiar problem only, but is a question of life,
of possible happiness of someone.
If we make a mistake, the consequence
will remain forever as a torture. In possible
intersex, transsexual, or any other
situation, what is in
debate here is life, is possibility of life, or a perennial
desiring for death.
I wrote in Portuguese, some
time ago: “No medical doctor,
no psychologist, no psychiatrist,
no anthropologist or sociologist, if never lived that
reality, could really understand what is a gender dysphoria” .
Because gender
dysphoria may be a continuous destructive process, sometimes with no
hope.
You
may feel sometimes yourself as a kind of a “Frankenstein”, or “ET”, or “Edward Hands of Scissors”
as one existential syndrome.
Most of people
think these situations as medical, social, familiar, psychological but we don’t remember, first of all,
it is an existential, so ethical and
philosophical problem.
In my point of view, we
have big
PHILOSOPHICALS questions to answer:
THESE ARE THE
REAL QUESTIONS….
Before these questions, we need to answer:
Thank you for
your patience with my bad English Tom,
Waleria
A Newborn Infant with a Disorder of Sexual
Differentiation
CASE:
Following
an uncomplicated 38 weeks pregnancy, a normal labor, and delivery with Apgar scores 8
and
9 at 1 and 5 minutes, respectively, a newborn was delivered with a birth weight
of
The physical examination was unremarkable, except for complete absence
of the penis. The scrotum
appeared normal with bilateral palpable gonads of normal size. A voiding cystourethrogram demonstrated a
normal bladder without uretero-vesical reflux; the
contrast study revealed that urine partially emptied into the
rectum and colon. The urethral meatus was positioned
at the anterior anal verge. Karyotype was 46 XY. This
is
the third child for this couple. They have a 4-year-old boy and a 6-year-old
girl.
To which sex should this infant be assigned? Accompanying decisions
concern disclosure of information to
patient and family (what should be disclosed about the condition and its
treatment and when?); surgery to
have
the genitalia match the sex assignment, or alternatively, female genital
anatomy (what should be done
and
when?); psychological support of the patient and family (who should provide it
and what model of care
should be followed?); and involvement of other family members and friends
(should they be told, and if so,
what
should they be told and when?). J
Dev Behav Pediatr 24:115
–119, 2003. Index terms: ambiguous
genitalia, sex differentiation, intersex, biomedical ethics, penile agenesis.
As almost all intersex
situations, that also is a disgusting one.
Dr. Martin T. Stein
This
challenging case is a rare condition that will not be
encountered by most
pediatricians. However, it represents a
dramatic example
of other more common conditions
discovered in the
newborn period associated with ambiguous
genitalia. Primary
care pediatricians are often the first
to
recognize the structural abnormalities in the external
genitalia and the
first to speak to the parents about the
condition. A knowledge of genetic and endocrinological
principles that
modulate fetal sex differentiation is essential
but
insufficient to provide comprehensive information to
the parents.
The influence of fetal sex hormones on gender
identity and the
incorporation of principles of patient rights
and patient
autonomy are additional areas of knowledge
required to guide
therapeutic decision making.
That last phrase,
for me, is the most important, perhaps, in that paper:
The influence of
fetal sex hormones on gender identity…. the incorporation of principles of
patient rights….. and patient autonomy.
Those 3 aspects,
for me, are the most important in all gender dysphorias
situations, intersex or any other: remember the
hormone action during pregnancy….... respect the patient’s rights and respect
the person autonomy.
Understand the
first, and recognize the second and the third, that is the way, surely, to
understand better all those situations.
But who is the
patient? The child, the baby, the intersex
or gender dysphoric, AND NOT its family.
A
variety of new concepts about newborns with intersex
conditions have
surfaced in the medical and bioethical
literature. They
reflect recent knowledge about the complexity
of gender identity
and gender role, bioethical considerations,
and the
influence of patient advocacy groups.
Gender identity
and gender role. And the influence of patient advocacy
groups.
As you will see,
I think the most part of our difficulties start when we mix up gender identity
with gender role playing in society, as a point of principle. And all the time,
we were mixing them up, in the past 50 years.
Another note is: why need the
patients to have advocacy groups? Surely because they feel as
victims of someone, or something. Only someone that thinks he has
rights, fight with an advocacy group. And if he has rights, and need to fight,
is because someone or something gave-up, in some situation, his rights (pardon
me my English. Those things are complex to explain in Portuguese… for me in a
foreign language is almost impossible! But I will try)
These
recent considerations are of interest to developmentalbehavioral
pediatricians in that
they focus on critical aspects
of
subsequent developmental outcomes.
Drs. David Sandberg and Tom Mazur are pediatric
psychologists who
specialize in the care of children and
adolescents with
endocrine disorders. They are members of
a
comprehensive clinical management team in pediatric
endocrinology at the
Children’s
Departments
of Psychiatry and Pediatrics, University at
Drs.
Sandberg and Mazur are involved in clinical research
on the
psychological adaptation of individuals with a
variety of
endocrine-related conditions and their families.
Dr. Erica Eugster is
a clinical associate professor of
pediatrics in the
section of pediatric endocrinology at
the
Dr. Jorge Daaboul is
an assistant professor of pediatrics in
the Division
of Pediatric Endocrinology at the University
of
ethical issues
that impact the early decision making in
children with intersex conditions.
Martin
T. Stein, M.D.
Professor
of Pediatrics
Children’s
Hospital San Diego
I would like to thank Martin Stein, for that so interesting introduction.
So correct, so perfect introduction to the problem.
Drs. David E. Sandberg and Tom Mazur
Don’t
be fooled—this rare case has more to teach than you
might think!
The infant is born with the extremely rare
condition of
penile agenesis (also known as aphallia).
Mortality
is high, because of associated urinary and gastrointestinal
tract problems;
however, complex forms of these
associations are
absent in this particular infant. Although
rare, the
case illustrates common challenges in the clinical
care of
patients with disorders of sexual differentiation
(‘‘intersex’’), in whom there is discordance among sex
chromosomes, gonads,
sex hormones, and phenotypic sex
(internal reproductive structure and external genital
appearance).
Thank you Tom for your words here. I like very much that
concept of different tissues, different aspects discordance, that generates intersexuality and also all dysphorias.
All dysphoria shows a discord, a lack of inner harmony.
Until
the mid-1950s, medical management of individuals
with intersex conditions was guided by the belief that an
individual’s ‘‘true
sex’’ could be revealed through examination
of internal
anatomy. It was assumed that a person’s
identification as male
or female would naturally conform to
‘‘true sex.’’
That “True Sex” concept is very important. I think it is more important than
we think today. Not as we considered in the past, thinking true was only
genital anatomy. That idea to resume sex as genitals, saying
that is true, is one of the most enrooted concepts in humam mind, because is inside us for millions of years, or
almost some cents of thousands of years, but it is not necessarily true. My MS
sexology dissertation was about it, but unfortunately, it is only in
Portuguese. But I think, we need really to find a
“true sex”, because each of us has a true sex, or live a true gender state:
male, female or androgynous, but surely, existentially for each of us, it is
true. Nowadays, we prefer to consider there exists a
"gender space", where humans live. The limits of that gender space
are Male(M) and Female(F), and we exist between these
limits.
Based
on reports suggesting that this assumption
was
incorrect, guidelines were changed, and sex assignment
decisions were
based on the principle of ‘‘optimal gender,’’
which
considered multiple aspects of outcome, most
prominently potential
for complete sexual functioning.3
That “Optimal Gender”, in my
philosophical point of view, is a good one, but may be used to disrespect the
autonomy and the right of each human being to exist in harmony as feels its
life and its sex and gender reality. The "Optimal Gender" is the
gender condition the patient feels and express. I prefer we consider the “True
sex”, or "Optimal Gender" not as something determined by genital
condition only, nor derived from a doctor's point of view or family's point of
view, but ONLY as one existential condition based on the PATIENT'S POINT OF
VIEW.
I think that
constructivist point of view, of social and anthropological construction of
gender identity as gender role playing and gender dichotomy as only a cultural
and ideological construction, is a very hard reduccionism,
reducing the human being as an object (reification), and not recognizing the
human rights of all humans as
persons, as a whole, with its autonomy.
This
approach, which stood largely uncontested until
recently,
Thank the Heavens, now it is changing!
is predicated on two
assumptions:4 (a)
‘‘gender
identity’’ (i.e.,
identification of self as either girl/woman or
boy/man)
is not firmly established at birth but rather is the
outcome of
rearing sex; and (b) stable gender identity and
positive
psychological adaptation require that genital
appearance match
assigned sex, which often calls for
reconstructive genital
surgery.
Tom, these two points of principle, are not “scientifical”, based in research and evidence, but
ideological, based in pre-conceptions. Based in Freud’s & Fliess
ideas, in XIX century! Based not in science, but in ideologic
points of principle!
That is the first
big problem of that old point of view: these two ideologic
principles. See, all the time, we have philosophical and ideological principles
in question, and never true science.
It is essential to distinguish
between gender
identity and other aspects of gender-related
behavior, which
may be influenced by prenatal hormones.
This
includes ‘‘gender role,’’ which refers to behaviors that
differ in
frequency or level between males and females in
this culture
and time (such as toy play or maternal interest),
and ‘‘sexual
orientation,’’ which refers to sexual arousal to
individuals of the
same sex (homosexual), opposite sex
(heterosexual), or both sexes (bisexual).
Here there is a very interesting mistake, also an ideological mistake.
And subreptitiously, the developers of these old
ideas, introduced
more “points of principle”, with no scientifical
evidences.
Money’s work, and later also Erhardt & Meyer-Bahlburg
paper (1980-Science), defined as Points of Principle, that the patterns of
playing are related to gender role playing, and not to gender identity. That is
never reasonable. If a cat miaw, it may not be a dog.
History and arqueology shows us also, that is not
true. In
Money &
fellows established, as another point of principle, gender identity was not
related to sexual hormones during gestation, but “gender roles”. That point of
principle, is also not scientific, but ideological. That was their definition,
but not the reality. And they based that conclusion, in the point of principle
that non human primates or mammals, had NOT a core
identity. Primatologists
today show chimpanzees (Pan trogloditas) and bonobos (Pan paniscus) have
surely a core identity.
All gender dysphoric victim shows all the time, during first
childhood, its inner tendencies, with its playing patterns. LATER, with not so
small age, the family, the others start interfering in that playing patterns,
and pressed to not show an unexpected or undesired gender identity &
expression, the child starts changing to a more palatable to others gender role
expression. A lot of victims show it through their anamnesis, and explain that situation
very well. And good science is based on evidences, through the external answer
of the patient, and not based on our personal models and ideologies.
So, there are
gender identity and gender roles. But surely, the hormones are important for
gender identities, and never for gender roles. Gender roles are truly role
playing… something socially constructed. Gender identity is inner feeling,
brain derived. Hormones may act on our brains, but not on our garments!
What feels in us?
Our brains!
Our selves are
the virtual creation of our brains!
The hormones may
act not in society, but in the children’s brains, so they may be important for
gender identities and never in gender role playing only, dissociated from the
brain expression as gender identity.
Those papers in
the 70’s and 80’s where very distorted ideological papers, and never were based
in scientifical evidences, but in the inner ideas of
the authors.
They fought
against a lot of evidences, from Imperato McGuinley, from Dorner, from Gorsky, from Swaab, etc, using
only ideological Points of Principles. Fortunately, now, we are not being so
misled by those points of principles.
The
clinical approach to disorders of sexual differentiation
(‘‘optimal
gender policy’’) has recently been
criticized from several
perspectives. First, the notion of
gender
‘‘neutrality’’ at birth has been challenged as a result
of a widely
publicized case.5 The
individual in this case
has a 46, XY
karyotype and was born with normally
formed male
genitalia. After a circumcision accident at the
age of 7
months left him without a penis, the child’s
gender was
reassigned, but not until 17 months, and the
child was
subsequently reared as a girl. This individual
(referred to as ‘‘John/Joan’’) has been studied extensively
as an adult.6 He reports having been
uncomfortable as a
girl
(‘‘gender dysphoric’’) and, starting at age 14 years,
began to live
as a male. He received a mastectomy and
began
testosterone replacement therapy in adolescence
followed shortly
after by phallic reconstruction. At age 25,
he married
and adopted the woman’s children. The gender
dysphoria and
ultimate sex reassignment of this individual
is believed
by some to have been predictable from
experimental studies
in animals in which exposure to
androgens during
sensitive periods of early brain development
is
associated with male-typical brain and behavioral
development.7
That David Reimer history is very
impressive. Surely, happened a scientific manipulation
of the results. The patient was all the time disrespected, because the ideas,
theories and ideologies were more important than reality. The Points of
Principle, were only ideological but not scientifical
ones.
Although
animal experimental research has
shown a
relation between prenatal androgen exposure and
sex-dimorphic
behavior, such studies have not examined
‘‘gender
identity’’ per se.8
That is a very important ideological
point of principle: Animals don’t have any identity, so they can't have gender
identity. That is a philosophical, ideological "absolutely old" point
of view. That is not science researching and evidence but bad ontology. On the
contrary, today, Damasio’s works in neurobiology, and
a lot of works in primatology from de Waal (see Bonobo, the forgotten ape, de Waal& Lanting,
1997, U California
Press) and a lot of others (mainly Walraven et
al,1995 ; Westergaard & Hyatt, 1994), show all
primates, including man, have a “core identity”, and in that core identity,
they show they feel male or female, they feel one gender identity. Obviously not as humans, but as someone. What we call male
or female primate behaviour, is their gender identity
expression. To ignore that humans are primates, was good for 1 or 2 centuries
ago... not nowadays when we see in a systemic way, we are a part of Nature as all
primates also are.
Each animal, each
organism, really each closure, organic closure, is a someone
and not a something. And
each one, in its own way, feels female or male. That is gender
identity. That surely is gender identity in man and other primates, and other
mammals.
When the animal shows its sexual answers through a lot of situations (as
a "behavior"), as the little child, they are showing and expressing
their gender identity, surely. Why not? So, all scientific evidences point
that way, and don’t agree with those old ideological Points of Principle.
The
impact of the John/Joan
case for
clinical practice is also tempered by the report of
another child
with a traumatic amputation of the penis with
considerably
different outcome.9
Are you sure, that "other
victim" will not one day say he suffered torture from family and doctors?
Or perhaps that other, and much other victim's had not
the same courage and the same chance to publish the misleading
"therapies" they suffered! After Colapinto's
book about David Reimer ("John/Joan") the big difference is, all old
idea was onbiously accepted as “science”, because
David’s results reported by Money and his co workers (those two old books) were
not real and and were used to give the experimental
background for these old “points of principle”. During a lot of time, during
the sixties, seventies and eighties……but now, when truth appeared, the castle
dismantled.
Today what we may say?
Sometimes, perhaps, may be, sex of
rearing may be important. But surely we may say, it is
not the determining factor to generate gender identity.
All those ideological points of principle
dismantled. We need now, to study hard, BASED IN SCIENCE AND EVIDENCES and
never more in our ideological points of principle, what is truly important in
gender identity determination.
As new “points of principle”, more
scientifically based ones, we have now:
1st: Gender identity is the
expression of our brains. We are the virtual construction of a self, from our
brains and body in one environment. Descartes was not correct (See Damasio’s “Descartes Error” and posterior papers). There is
no self, and no gender identity, without a neural brain behind. So, let’s
understand our brains, and discover how and when gender identity is formed in the
brain.
2nd: The gestational hormones
circulation, action, and activation, mainly testosterone and its metabolites,
play an essential role in that process. We are not sure how it works, but we
have a lot of evidences among other animals (Gorsky, Dorner, Swaab, Pfaff, etc), non
human primates (Resko, Bonsall,
Michael, Sholl, etc) human cadavers (Dorner, Swaab, Gorsky, McEwen, LeVay, etc) and
alive humans (Kawamura, etc), that gestational hormones are very important in
the human and other animal’s brains, in systems surely related to gender
identity (Newman,2000).
3rd: As the genital tissues
may have conformation problems, including cross gendered problems, as intersex conditions, why not the brains, as another part of
the body, could not have the same kind of problems?
4th: We know, today, thru
primates results (Bonsall, Michael, Resko, Roselli, etc), that in our
brains and our genitals, the hormone action IS NOT THE SAME! We have a lot of
results about that. So, if the processes involved are different, and the agents
are also different, why not could have different results, sometimes? Why a very
interesting study in that way never was developed? Why not?
5th: Another
interesting scientifical evidence: who masculinizes the genitals is DHT. Who masculinizes
the basal brain IS NOT DHT, but testosterone. And there may happen
a differential activation of the androgen receptor, by DHT and T (Pinsky& Kaufman, Gottliebe,
etc). So it is possible (only possible), that sometimes, in some transsexual
situations (not necessarily all), could happen a good action of DHT in the
genital tissue, but a not so good of T in the brain! No one, up until now,
studied that possibility, seriously. I tried to study it in
Tom I don’t know how is formed the gender
identity. Surely, a lot of inputs contribute in that existential formation. But
what I am sure is, that formation happens in the brain, mainly during pregnancy
(Clark,et al, 1988). After
birth…society, family, etc, modulate and limit gender identity expression and
living. And all that problem generates a lot of
existential problems, for all intersex, transsexuals
and all gender dysphorics, that live that kind of
discord as its inner reality. Others live not the inner discord, but their
brains are not absolutely sexed, as perhaps are not their genitals. What is
important to say is, we live not in an absolutely
sexed universe. The duality of the sexed hypothesis is not the reality but the
limits of a "gender space". "Normals"
are very simple and very sexed, as a default value, as M or F. Gender dysphorics may be, mainly transsexuals, an inner
discordance... a part goes to the M, others to the F... and only the self may
define if it is very sexed or mild sexed, and what is the prevalence M/F, if
there is a prevalence. Most TS have a strong prevalence, in discord with the
genitals. But some ISx may be much more
less sexed... as their genitals, their brains & minds may be not
very sexed. That may erect a special gender identity condition, in a point
between the M/F limits... and we sometimes may not be sure at what level will
be the "default" gender identity. Only the patient will define that
point set up, if any. The present case patient is not a real ISx, but a situation that probably all is more M than F...
so we may not decide for the baby... we may NOT do the simplest surgery to
change as a F... we need to wait the free and complete expression of the
child... probably here a more M than F.
As
an adult, the individual
maintains a female
gender identity, although she
exhibits
masculine occupational and recreational interests
and a
bisexual orientation.
A
second challenge to the ‘‘optimal gender’’ policy
comes from intersex individuals themselves, who are angry
about their
treatment.10
Here I think it is important to split
between the dysphoric or intersexual, and its family
and parents. The victim here, the patient here, for me, is the child, never the
family. So, what the intersex say? Wait please!
Because if you make a mistake, for you will be only statistics, books and
papers…. for the family will happens something disgusting and boring…. but for us,the gender dysphorics,
intersexual or transsexual, we will live a hell!
A lot of assigned
at childhood intersex remain insensible, anorgasmic….truly destroyed. They remain as gender dysphorics (MtF or FtM), and
sometimes, even without a gender dysphoria, they have a sexual dysphoria,
because they feel assexed people, without pleasure, without possibilities.
They hide themselves.
Here in
Why?
Because all they
need, is respect, and the right to be themselves, in
their way of living and suffering. What we may do for them? We may do, what
Money don’t did: respect their feelings. Their
feelings are more important than their families, than their schools and
neighbors, then their relatives, I say, even, for me their feelings are more
important than Law. Because our laws, sometimes are very
stupid and ignorant, because we are stupid and ignorant. But they may
not pay the price of our stupidity and ignorance.
They
object to the fact that they
were either
not informed or misinformed about their
condition, they
are still unable to obtain accurate information
about their
condition and treatment, and they feel
stigmatized and
shamed by the secrecy surrounding their
condition and its
management. Many also attribute poor
sexual function
to damaging genital surgery and repeated
and
insensitive genital examinations, both of which were
performed without
their consent.
Those are a mix up of feelings, between the victims and their families.
Finally,
social constructionists have challenged the entire
enterprise of
medical management of intersex cases by
arguing that
medical practices are rooted in history,
language,
politics, and culture, and therefore are not
universal
scientific facts.10 Thus,
the ‘‘correction’’ of an
intersexed
infant’s genitals is less a medical emergency than
it is the
adoption of medical technology to support a cultural
imperative to view
the sexes as dichotomous. Supporters of
this point of
view contend that such beliefs result in
unnecessary and
damaging surgery.
I don’t agree necessarily with their ideologic
points of view, but I agree with the results. Wait the child manifestation.
Assign a “preliminary” sex, a social rearing in one sex, in a very androgynous
and light way… the child need to show who he/she is, and if we respect and love
and permit it, it will happen…. Because the brain is there….
And it will show the inner reality. Only after a free and express solicitation
of the child, I think , a “final sex” may be defined,
including genitally. And improve your surgeries, please! To live without erotic
and sensual possibilities, surely is too hard! Respect the autonomy of the
victims!
How
should a decision regarding sex assignment be
reached in the
present case? Until recently, most children
with aphallia would receive a female sex assignment.
That surely is the worse decision possible. Why? Because possibly the
brain had not the same genital problems, we are not sure.
What I suggest to do today in that aphallia situation?
Possibly the brain is male. Start rearing, in a light way, as a male. And
wait. One day, if we know how to observe the child really, not in front of
others, but when alone (the gender dysphoric lives
all the time hiding from others – based in that characteristic I propose the
development of Gendercare Game-Tests for diagnosis of dysphoria in little
children). Playing our game, the child feel alone, and show itself…and we
receive electronically the results, thru the web. So, after time or our test
(to gain some years), we may decide who he/she is. And ask them, what they
would like to be…etc..
Only after that process, until we have a better brain diagnostic, if we
will have one one day, we could, respecting the child
as a person, with a life and a future, see if we will adapt a surgery or not
(good quality surgeries, please!)
Accordingly,
the testicles would be removed and genital
surgery performed
to create the outward appearance of
female
genitalia, that is, labia and clitoris. Surgical
construction of a
vagina might be performed at this time
or be
postponed until adolescence. A feminizing puberty
(development of breasts and feminine body) would be
achieved through
the administration of estrogen therapy
beginning in the
early teenage years. It has been thought that
this approach
would maximize the individual’s psychological
adaptation,
including gender identity, body image, and
sexual
function.
That would be a very dangerous situation for the child. And a lot of
times, as a lot of other gender dysphorics, with
shame and fear, they never will openly admit their sufferings. I am sure, the most part of the “good” feminization solutions
that way, are not real, but is an inner torture for the victim. Ashamed,
fearing life, parents, and all, they close in themselves, as the gender dysphorics most part of the time do.
Conversely, delaying or avoiding surgical
construction of
female external genitalia would potentially
jeopardize the
formation of an unambiguous gender identity
because of the
incongruence between gender rearing and
genital
appearance.
That is not true. That is a Myth. A myth that now need
to be reviewed, as soon as possible.
An alternative decision might be to rear
this infant
as a male (consistent with his gonadal sex)
because prenatal
testosterone has presumably ‘‘organized’’
the brain,
foreclosing identification as a female. Phalloplasty
might then be
considered, although the challenges of
this option
are daunting and it has only rarely been
attempted. The
option of not attempting to provide the
child with a
phallic structure would potentially jeopardize
stable gender
identity formation.
A lot od FtM transsexuals live that reality. They are men, they feel
they are men, and live as men, and play male gender roles in society. But don’t
have male genitals, because the surgeries are not so surely good, and the good
ones are so expensive. BUT SURELY THEY ARE MUCH MORE HAPPY LIVING AS MALES WITH
PROBLEMS, THAN AS FEMALES. Because they are males, they always were males.
Given
the dearth of systematic information on long-term
outcome in
individuals with aphallia and other forms
of intersexuality, how should this clinical problem be
resolved? How are
the parents to be involved in the
decision? What
information do they need to make informed
First we were too impressed by our points of principle, ideological ones.
Then we are impressed by medicine principles. Then, by society, and now
respecting too much the families. Surely,
dialectically we are improving a little. But THE MOST IMPORTANT WE ARE
IGNORING: THE CHILD’S RIGHTS. The child as one whole human
being, not the part of a family. That is the main idea: respect the
human being, as a child. It is not important what is good for our ideas. Or the Law, or society. Nor the family and
parents. What is important is the human being, and the baby is a whole, an human being. Let’s start respecting it. How?
We have a lot to
do:
1st: scientifical research of the brains and gender identity,
thru fMRI, molecular biology, hormone action and
expression, etc.
2nd:
start changing social and law principles: Genitals don’t define sex, nor society
and role learning. No one learns to be a boy or a girl, but what someone may
learn is to play the female or male gender role, society
suggest you would live. So we need to start establishing “preliminary
sex assignment”, that later, in intersex
and transsexual cases, could be reviewed and corrected.
(some decades ago, I was a horse farmer, also. As a hobby, I
had Arab horses, very good champions in
If the arab horses, as the throughbreed and Andaluzian horses have that right, why not could have that
possibility our law to protect our children?
decisions on
behalf of their child? Rare as this case is, it has
much to teach
us. Questions emerge regardless of whether
the infant
is assigned a gender and reared as a boy or as a
girl. (We
acknowledge Dr. Sheri Berenbaum’s constructive
comments on a
draft of this commentary.)
David
E. Sandberg, PH.D.
Pediatric
Psychiatry and Psychology
Children’s
Hospital of Buffalo
Tom
Mazur, Psy.D.
Pediatric
Endocrinology
Children’s
Hospital of Buffalo
REFERENCES
1. Grumbach M, Conte FA. Disorders of sex differentiation. In:
JD, Foster D, eds. Williams Textbook of Endocrinology. 9th ed.
2. Melton L. New perspectives on the
management of intersex. Lancet.
2001;357:2110.
3. Money J. Sex Errors of the Body and Related Syndromes.
MD: Paul H. Brookes Publishing Co.; 1994.
4. Zucker K. Intersexuality and gender identity differentiation. Annu
Rev Sex Res. 1999;10:1– 69.
5. Colapinto J. As Nature Made Him.
Publishers; 2000.
6. Diamond M, Sigmundson HK.
Sex reassignment at birth. Long-term
review and clinical implications. Arch Pediatr Adolesc Med. 1997;
151:298– 304.
7. Goy RW, McEwen BS. Sexual Differentiation of the Brain.
8. Collaer MA, Hines M.
Human behavioral sex differences: a role for
gonadal hormones during early development? Psychol Bull. 1995;
118:55–107.
9. Bradley SJ, Oliver GD, Chernick
AB, Zucker KJ. Experiment of
nurture: ablatio penis at 2 months,
sex reassignment at 7 months, and
a psychosexual follow-up in young adulthood. Pediatrics.
1998;102:e9.
10. Kessler SJ. Lessons from the Intersexed.
Dr. Erica Eugster
This
case represents one of the most difficult situations
faced by
parents and health care professionals involved in
the care of
infants born with an intersex condition.
See, all expectation is over health care professionals and family….AND
THE VICTIM? The child is not a human being, but only a parent’s property, or a
family’s part?
Unlike
many other
conditions that result in undervirilization of a
genetic male,
the 46, XY infant with isolated aphallia was
presumably exposed
to normal levels of male testosterone
during
intrauterine life. A major concern revolves around
the effect
of prenatal androgen exposure on ‘‘masculinization’’
of the
brain and ultimate gender identity.
If all our body parts and tissues may be female or male, and not only the
genitals: why not the brain? The brain masculinization,
or not, is a reality for all other primates and all mammals studied…. Are we
not mammals? Not animals? Not primates? Are we Jupiter’s idea,
or created by the Jewish and Christian God? Or by Allah?
Or by the African Yoruba Gods? Or by
Brahma, Vishnu and Shiva?
What
can we learn from the literature regarding sexassignment
and outcomes
in similar cases? Congenital
absence of the
penis is extremely rare, with fewer than 100
cases
reported. Although female sex-reassignment and early
bilateral orchiectomy historically have been considered
standard-of-care for
these patients, follow-up studies focus
primarily on
success of surgical procedures rather than
psychosexual
development and function.1 In
the few case
reports of aphallia in which a male gender was assigned,2
limited
information is available regarding psychological
adaptation and
long-term satisfaction.
I fear those “long term satisfaction surveys”. Money manipulated all the
time the “long term satisfaction” of David Reimer. That tendency was not
Money’s but is human, our tendency. Our ideas and theories absorb us in a way,
that at the minimun possibility we say, it is
confirmed! She is a very happy female!
But a lot of
times, men think their women were also very happy, until the day they flew with
the neighbor, or ask for divorce. And vice versa.
So, I don’t
believe really in those “studies”, mainly because I know how a gender dysphoric may hide the reality, for dozens of years, and
sometimes for life.
Another
strategy is to
attempt to
extrapolate from similar populations of 46, XY
patients with
apparently normal early prenatal testicular
function, such as
those with micropenis or traumatic penile
loss.
Although there are reports of normal male gender
identity and
fulfilling heterosexual activity in such patients,3
female gender
role and satisfaction with sex-of-rearing have
also been
reported in a small number of individuals.4
Truly, very small amount….and please, remember Imperato MacGinleys data from
A
few sensationalized cases of extreme gender dysphoria
and patient
groups advocating a moratorium on early
genital surgery
have encouraged the medical community to
recognize the
critical need for long-term outcome data on
intersex
populations.
For Dr.Eugster they were sensationalized,
because she was not among them. That sort of disrespect, today, is no more
acceptable, please! We are not in Victorian times, nor Middle Ages, suffering
the Santo Oficio Tribunal authoritary
sentences, please!
However, the few existing studies of
the claims
made by intersex support groups have been
limited by small
sample size and selection bias.5
Here Dr.Eugster
shows her ideological bias.
Therefore,
we find
ourselves currently in a situation with far more
questions than
answers. How, then, should we begin to
address this
challenging case?
Once
the medical diagnosis has been established, parents
of an infant
with intersex should be given a comprehensive
and explicit
explanation of normal and abnormal sexual
differentiation.
Considering the paucity of scientifically
validated outcome
data in the management of intersex, all
available
information should be shared, including that which
has been
highly publicized and is arguably biased. A
consistent source
of dissatisfaction among adult intersexuals,
even among
those for whom the psychosexual outcome
appears
favorable, has been the lack of disclosure by
medical
professionals (and often parents) regarding their
diagnosis and
treatment. The perceived secrecy can be
experienced as
shame. The ideal time at which to establish a
culture of full
disclosure is in the initial discussions with
parents. At that
time, information should be provided about
the
diagnosis and options regarding sex assignment and
surgery.
Surgical options for this challenging case include
the
technically difficult phalloplasty6 or the easier vaginoplasty.
7–8 Each
procedure is associated with short- and longterm
complications. All
options should be considered in the
case of the
infant with aphallia. If the child is reared male,
there is the
potential for endogenous steroidogenesis and
fertility, whereas
if the child is reared female, hypogonadism
and
infertility are guaranteed.
A
third option promoted by patient advocacy groups
would be to
rear the child as either a boy or as a girl, but
defer gonadectomy and genital surgery until the child can
independently provide
informed consent.9 However,
early
gonadectomy
should be considered in cases of a female sex
assignment in light
of the postnatal rise of testicular
testosterone that may
further masculinize sex-dimorphic
regions of the
brain. Gender-validating surgery has long
been
considered crucial to the development of uncomplicated
gender
identity. However, a widely publicized case
report of a boy
with traumatic amputation of the penis
reared as a
girl after feminizing genital surgery10 and the
example of
physically normal transsexuals who request sex
reassignment
illustrate that genital appearance consistent
All Dr.Eugster preoccupations are with society
and family. For her, the child is more one thing than one person. Truly she is
living in the xxth or even the xIxth
century, ideologically and ethically. Philosophically in the
Middle Ages...
with rearing
gender is not a guarantee against the development
of gender
dysphoria later in life.
In
light of contemporary controversy, few would hazard
the
assertion that there is an absolute ‘‘right’’ or ‘‘wrong’’
answer
regarding optimal sex assignment in this case.
Nonetheless,
honesty and empathy go far in establishing an
atmosphere of trust
within which the parents may become
full
participants in the decision-making process. This goal
can be facilitated
by the inclusion of a mental health
professional in the
clinical care team. Necessary qualifications
of such a
team member would be knowledge regarding
the process
of physical sexual differentiation and its
disorders,
psychosexual development, and the potential
contributions of the
social environment and biology to
individual
variability. In addition, this team member would
have more
general knowledge and experience in caring
for children
with congenital health problems and their
immediate and extended
families. This behavioral specialist
can provide psychoeducational counseling at the time of
diagnosis to
support the objective of fully informed consent
for medical
management, including surgical decisions. The
mental health
specialist would be available to parents and to
the child to
provide on-going support to address inevitable
concerns
regarding the correctness of the sex assignment
decision and to
provide the parents with the skills to deliver
developmentally
appropriate education to the child regarding
his/her
condition and treatment. Although not yet
supported by
controlled studies, such a comprehensive
clinical care
model holds the promise of enhanced quality of
life for the
affected individual and his/her family.
Erica
Eugster, M.D.
Clinical
Associate Professor of Pediatrics
REFERENCES
1. Hendren WH. The genetic
male with absent penis and urethrorectal
communication: experience with 5 patients. J Urol. 1997;157:
1469– 1474.
2. Ciftci AO, Senocak ME, Buyukpamukcu N. Male
gender assignment
in penile agenesis: a case report and review of the literature. J Pediatr
Surg. 1995;30:1358– 1360.
3. Reilly JM, Woodhouse CRJ. Small penis and the male sexual
role.
J Urol. 1989;142:569– 572.
4. Wisniewski AB, Migeon CJ,
Gearhart JP, Rock JA, Berkovitz GD,
Plotnick LP, Meyer-Bahlburg HF,
Money J. Congenital micropenis:
long-term medical, surgical and psychosexual follow-up of
individuals
raised male or female. Horm Res. 2001;56:3–11.
5. Dayner J, Witchel SF, Lee PA. Assessing care of intersex
patients:
initial survey results. Pediatr Res. 2002;51(pt
2):119A. Abstract.
6. Ochoa B. Trauma of the external genitalia in
children: amputation of
the penis and emasculation. J Urol. 1998;160:1116–1119.
7. Creatsas G, Deligeoroglou E, Makrakis E, Kontoravdis A,
Papadimitriou L. Creation of a neovagina
following Williams
vaginoplasty and the Creatsas
modification in 111 patients with
Mayer-Rokitansky-Kuster-Hauser
syndrome. Fertil Steril. 2001;76:
1036– 1040.
8. Krege S, Walz KH, Hauffa BP, Korner I, Rubben H. Long-term
follow-up of female patients with congenital adrenal
hyperplasia from
21-hydroxylase deficiency, with special emphasis on
the results of
vaginoplasty. BJU
Int. 2000;86:253–
258.
9. Diamond M, Sigmundson HK.
Management of intersexuality.
Guidelines for dealing with persons with
ambiguous genitalia. Arch
Pediatr Adolesc Med. 1997;151:1046 –1050.
10. Colapinto J. As Nature Made Him.
Publishers; 2000.
Dr. Jorge J. Daaboul
This
case serves as a model for the current debate on the
management of the
child with ‘‘ambiguous genitalia’’ or, to
use the term
that has acquired wide currency in the last five
years, with intersex. In the 1950s, a management strategy
for children
with intersex was formulated that included early
sex
assignment with early surgical correction to assure
consonance between
the assigned gender and the physical
appearance of the
child. To assure gender-appropriate
parenting, parents
were often not fully informed of the
child’s
condition because it was felt that if the parents had
any doubts
about the child’s gender, they might send the
child mixed
signals, resulting in an insecure gender
identity.1 With
small modifications, this management
strategy remained
in place until the mid 1990s and is still
accepted in many
centers in the
the world.2,3
In
the mid 1990s, social scientists, a number of intersex
activists, and
some physicians called for a revision of this
management
strategy. The debate focused on management
strategy
continues to this date. It has led physicians to be
more open and
share more information with patients about
their
condition and about the consequences of medical
and/or surgical
therapy. However, the focus of management
has remained
fixed on determining which medical and/or
surgical
interventions will yield an optimal outcome for
each intersex condition. The general feeling is that the
current debate
on intersex will be resolved when the
appropriate outcome studies
are done and that, when these
data are
generated, physicians will, in effect, be able to use
an
algorithm to determine a child’s sex of rearing and the
appropriate medical
and surgical interventions that the child
will require
to make her/him a well-adjusted individual with
a secure
gender identity and adequate sexual function.
Although
I believe that studies are important and
necessary to
establish the efficacy of the various medical,
surgical, and
psychological interventions that are used in
the management
of the child with intersex, I believe that the
data will
yield results that confirm an enormous variability
in how
individuals with identical intersex conditions
develop
psychologically. Even the limited studies available
(e.g.,
behavioral characteristics of girls with congenital
adrenal
hyperplasia4)
point to widely divergent outcomes.
There
are conditions, such as complete androgen insensitivity
syndrome, where
outcomes are almost universally
predictable. But for
most intersex conditions, the psychological
outcome will be
so variable that, for each specific
case, the
outcome will be unpredictable.
Therefore,
the current medical model with its focus on
diagnosis and
medical-surgical treatment does not assure the
best possible
outcome for children with intersex conditions.
The
appropriate care model is one in which the focus is
shifted away
from the precise medical diagnosis and towards
the parents’
conception of what their child has, what they
believe their
child’s gender to be, and how they see their
child’s future
in the context of their family and of society.
Each
set of parents, with their unique sociocultural
beliefs
and
backgrounds, would then make all decisions regarding
the care of
their child. These decisions will be unique to each
family and will
reflect each family’s unique perspective on
the
incredibly complex issues of sex and gender. This task
should be
facilitated by health care professionals expert in
the field of
family counseling and child development who
are, in
addition, familiar with intersex conditions.5
To
apply this reasoning to the challenging case, there is
no
‘‘right’’ medical-surgical procedure for the infant with
aphallia.
Rather, after informing the family of what is
known and not
known about the outcomes of this condition,
the
caregiver should explore with the family members their
feelings about
what they believe is best for their child and
respect their
decision.
In
summary, it is my opinion that when all the outcome
data on intersex are collected and analyzed we will discover
that there
will be no one answer or management protocol
per intersex condition, but rather many answers, each
unique to a
given family.
Dr.Jorge really understand
only ethics for the parent's and family point of view, and never the child's.
I can't agree, in that, with him.
Sorry, Tom, but I am too tired. To write in a foreign language for me is hard,
and I am really not so young (to don’t say I am feeling really old!)
Thank you , dear friend.
Let’s believe in
science and evidences?
Let’s respect the
victims?
Let’s change our
philosophical and ideological points of principle?
Thank you,
PS.
I wrote two books
about that subject, but unfortunately, only in Portuguese. “Domage”!
About that
particular aphallia case, as I said, what I would
suggest would be:
1.Wait;
2. Start
preliminary, rearing in a mild way, as a boy.
3.Observe;
4. Observe the
child, observe the child reactions, observe if the child hides frequently...
try the Gendercare Game-test with 6-7-8 years old...
5.Observe;
6. With 6,7,8 we hope we could be sure who the child is, and start
maintaining the sex of rearing, or not.
7. After
necessarily and mainly expressly by the child desired corrections, reassign
legally the child, but only with the free decision and concordance of the
child.
Jorge
Daaboul, M.D.
Assistant
Professor of Pediatrics
Division
of Pediatric Endocrinology
Department
of Pediatrics
REFERENCES
1. Money J. Sex Errors of the Body and Related Syndromes.
MD: Paul Brookes Publishing Co; 1994.
2. Lifshitz F. Pediatric Endocrinology.
Inc; 1996:296.
3. Sperling M. Pediatric Endocrinology.
Saunders Co; 1996:449–450.
4. Meyer-Bahlburg HF. Gender
and sexuality in classic congenital
adrenal hyperplasia. Endocrinol Metab Clin North Am. 2001;30:
155– 171.
5. Daaboul J, Frader J. Ethics and the management of the patient
with intersex: a middle way. J Pediatr Endocrinol Metab. 2001;14:
1575– 1583.
Dr.
Martin T. Stein
Children
who are born with intersex conditions bring
enormous
challenges to the fields of developmental
endocrinology and
child development. The commentaries
that
accompany this case emphasize contemporary social
and ethical
issues that have not always been considered in
the early
medical decision-making process. In addition,
cultural
differences with regard to the acceptance of intersex
conditions may not
conform to those of Western society and
should be taken
into consideration.1
The
contemporary dialogue on an approach to the child
with an intersex condition is a credit to our colleagues in
pediatric
endocrinology who have responded to recent
scientific
discoveries (both biological and psychological)
and the
concerns of patients and their families. Dr. Robert
Blizzard,
in a recent commentary in Pediatrics,
wrote:
‘‘There
exists a series of conundrums regarding gender
assignment, gender
identity, gender role, and sexual
preference that
need solving before we can be comfortable
in
providing reasonable answers to the questions posed by
parents of intersexed patients and those of the patients
themselves.’’2
This
is an area in which a developmental-behavioral
pediatrician can
contribute in significant ways. With an
emphasis on the
interactions between biological and
psychosocial aspects
of child development, the issues
raised by the
birth of a child with an intersex condition
are
particularly suitable to the clinical perspectives of a
developmental-behavioral
pediatrician. The commentaries
invite an
interdisciplinary approach that should be seen as
an
opportunity for participation.
REFERENCES
1. Kuhnle U, Krohl W. The impact of culture on sex assignment and
gender development in intersex
patients. Perspect Biol Med. 2002;
45:85– 103.
2.
Pediatrics. 2002;110:616– 621. Commentary.
Challenging Case 119
For the black words from the original paper, Copyright © Lippincott Williams &
Wilkins. For the gray answers Copyright 2003 © Gendercare.com. Unauthorized
reproduction of this article is prohibited.
M.Italiano,
researcher, contribution:
Hello to all contributors thus far,
May I add that there is very little evidence for a theory of gender identity
formation based upon genital appearance. I have tremendous respect for Dr.
Meyer-Bahlburg and others who seem to believe this,
but I believe they are taking a misguided approach.
They often compare how long those with ambiguous genitalia are left in that
state and try to correlate this with gender identity development. It is
misguided, because although they control for the degree of genital ambiguity (Prader scale), the years/months without surgical
intervention, and even achieve good estimates for prenatal androgens, they
often omit other criteria.
For example, they often compare XY male pseudohermaphrodites
with XX female pseudohermaphrodites. This is a big
mistake, as it is now known that there is a differential expression of androgen
receptors in the human brain between males and females. Likewise, the SRY gene
on the Y chromosome is expressed in the human brain. Also the DAX-1 gene on the
X chromosome is expressed in the human brain. DAX-1 regulates the androgen
receptor (AR).
So, when these researchers compare XX CAH persons who have very masculnized external genitals with XY 5 Alpha reductase deficiency individuals, who have far more
feminine external genitals, they believe the 5 Alpha RD individuals should do just
as well as, or even better than, the CAH individuals with a female gender
assignment. However, this I believe is a big mistake, as they haven't accounted
for:
1) The likelihood that the XX CAH persons will have less AR
numbers/distribution in certain areas of the brain.
2) That SRY gene will be expressed in the brains of the XY 5 Alpha RD
individuals, but will be absent from the brains of the XX CAH individuals. (SRY
also interacts with steroidogenic factor 1.)
3) That DAX-1 gene will have greater expression in the XX CAH persons, as there
are two X chromosomes in these individuals when compared with their
Another problem is the comparing of several types of male pseudohermaphroditites
with each other based upon genital ambiguity (Prader
scale) and common social environments. Dr. Jean Wilson has found that 70% of
This, I believe adds further support to the "Torres-Jurberg
hypothesis" regarding ligand selective activity
of AR, because 5 Alpha RD persons "only" have a problem with androgen
ACTION, in that they don't convert T to DHT. They have "plenty" of T.
However, the 17 B-HSD persons have a problem not with the androgen ACTION, but
with the androgen PRODUCTION, and produce less T than the
Furthermore the third type of male pseudohermaphroditism,
CAIS individuals who have a failure of AR ACTION at T and DHT, seem to present
even less for a gender change to male when assigned as female.
Thus, to compare all three types amongst themselves based upon common social
environments and degree of genital masculnization as
determined by the Prader scale seems to be futile. It
does not take into account the mechanics involved.
For intersexed individuals with ambiguous genitalia,
we have 2 HUGE problems:
1) We can't predict their gender based upon their genital appearance.
2) We can't undo the nerve damage AND the functional damage by well-intentioned
surgeries.
It is simply "rolling the dice" and playing a "gambling
game". Can the surgeons ever admit they've made a mistake in their ways of
thinking? The only answer is that they MUST.
They should not be allowed to wait until more patients come forth tell them
first.
This has happened far too much throughout history.
Would you like to say us your opinion about these subjects?