Why Are Doctors Still Performing Genital Surgery on Infants?

Medical researchers have finally provided scientific backing for a truth that advocates have known for years—that performing genital reshaping surgery on intersex children at birth or soon after is harmful. A study in the Journal of Clinical Endocrinology and Metabolism found that large numbers of intersex adults are dissatisfied with the results of childhood genital surgery; the study's authors recommended that surgical decisions be postponed until adolescence or adulthood, when the patient can give informed consent. Despite such conclusive findings and harrowing accounts from young people speaking out about the abuse they experienced at the hands of medical providers, involuntary genital cutting remains routine throughout the world.

A person has an intersex condition, or difference of sexual development (DSD), if he or she is born with a body that is different from what most people expect for a male or female child. Such anomalies can include atypical genitals, chromosomes, or internal sex organs.  When a child is born with atypical genitals—whether that means a clitoris that is larger than usual, a penis with a urethra that doesn’t come right to the tip, or genitals that do not look obviously male or female—it is common for doctors to perform genital surgery in infancy to make the genitals look more “normal.” This is done because doctors and parents are distressed by the appearance of atypical genitals, and they believe “normalcy” will make the child's life easier.  Often, doctors and parents also believe that making the genitals look more typical will prevent “gender confusion” or homosexuality. By performing involuntary, non-lifesaving surgeries on intersex infants, these perhaps well-intentioned doctors are blatantly violating their patients’ rights and in some cases the law.

Additionally, genital reshaping surgeries often don’t work out as planned. They can cause lifelong physical and psychological pain, scarring, lost sexual sensation, and many other problems. Sometimes the procedures also involve involuntary sterilization. Sometimes the child rejects the gender assignment, and these surgeries are not reversible.  Intersex adults who have lived through these procedures argue that only the affected person can decide whether to take on these risks, and they believe—like the study’s results conclude—that genital reshaping surgery should not be done until the child is old enough to participate in the decision-making process.

Thanks to the work of an emerging cadre of advocates for people with intersex conditions or DSD, standards of care are starting to change. An international consensus statement by medical professionals recommends a more restrained approach to genital surgery.  It also recommends telling patients and parents the whole truth about their condition and treatment, which has not always been the practice. Doctors and parents are now questioning the wisdom of early genital surgery, and the practice is increasingly considered controversial (but it is still widely done).

Many parents report that they were not given full information when asked to make medical decisions for their intersex children, particularly about the controversies around genital surgery. Advocates for Informed Choice (AIC) is one leading legal advocacy group working to make sure that parents receive complete information and that the rights of children with intersex conditions are protected when medical decisions are being made. Part of this work is to make sure that doctors know that some involuntary procedures commonly performed on children with intersex conditions are in fact against the law. Another part is to help their clients recover from the abuse they suffered masquerading as medical care.

A few years ago, an intersex woman approached AIC with a request. She was born with atypical genitals as a result of a medical condition. In an effort to make her look like a “normal” girl, her doctors had removed her clitoris in infancy. They told her parents never to tell her what had happened. Throughout childhood she was exposed to humiliating displays at the teaching hospital where she was treated, being made to show her genitals to one resident physician after another. Such treatment was standard for children like her. As an adult, she decided to take action to be sure that nothing like this happened again. She didn’t ask to sue her doctors, though. She wanted an apology.

AIC asked the hospital workers to listen to the woman’s story. At first they were defensive. They argued that they had done their best for the patient and followed accepted protocols. After extensive negotiations, two leading hospitals and the prominent physician who had overseen her care recognized that she had suffered real harm as a result of her treatment, and they offered sincere expressions of regret. To our knowledge, these are the first such apologies. Unexpectedly, the physicians involved in this process are taking action on their own to improve care, to be more aware of privacy issues, and to reduce unnecessary interventions. Hearing her story and the act of apology helped them to see intersex patients in a new way.

The Campaign to Stop Torture in Health Care, a coalition led by the Open Society Foundations, recently applauded AIC founder and executive director Anne Tamar-Mattis for her work in exposing the degrading and abusive medical treatment of intersex children. We hope the medical community will take a step back to read the latest studies and listen to the voices of advocates and patients themselves.

 

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Hermaphroditism can be true- a state characxterized by the presence of both ovarian and testicular tissue and ambigious morphologic criteria of sex. Themn there isbilateral hermaphroditism in which godanal tissue of both sexes occurs on each side of the body.Lateral hermaphroditism -presence of godanal tissue typical of one sex on one side of the body and tissue typical of the other sex on the opposite side.Transverse hermaphroditism in which the external genital organs are typical of one sex and the gonads typical of the other sex Then there is pseudohermaphroditism (=false h.)-a state in which the gonads are of one sex but one or more contradictions exist in the morphologic criteria of sex. In female pseudohermaphroditism the individual is a genetic and godanal female with partial masculinization and in male pseudohermaphroditism is a genetic and godanal male with incomplete masculinization. For any surgeon or OB/GYN doctor to determine which sex a child is without elaborate test (let alone puberty and hormones) and the parents' understanding of the facts-and scheduling 'reconstructive surgery at the early stage should never even be contemplated. The reason why Birth Certificate by hospitals/doctors/homebirth nurse practioners to identify the sex of the child male-female is of issue-there must be legal leeway to ID hermaphrodites so they can go to schoold/travel etc.Surgeries and hormone therapies can first occur after the outset of puberty.There are good sources of info.http://www.welt.de/gesundheit/article2126690/Zwitter_Mann_und_Frau_zugle.... The other http://humanrights.4hermaphrodites2.org/ Biology and Environment,Genes and Biotechlogy (translated from ww.tiede.fi/7/23/2008 )whereby researchers for the Antartica established that more than 1% (one percent)of polar bears are hermaphrodites. The record should also show that the tissues determining one's sex happen in the sixth or seventh week of pregnancy (7th week is promoted by English 4hermaphrodites2.)

No Human known to science is or has been an Hermaphrodite. The use of this terminology demonstrates either unfamiliarity with the meaning or ignorance of science possibly both.
hermaphrodites are somewhat common in the plant kingdom and found in some species of snails and earthworms . physiological developement in mamalian animals makes the possesion of two complete and functioning sex organs impossible.

The notion that extensive testing can determin the sex of an Intersex person ( who by definiton is of unknown sex) buys into binary essentialism that takes as fact that in nature mamals can onle be male or female. This of course flys in the face of demonstrable fact.

sorry but you are misinformed.
please look up chimera.

I know very little about this subject but it seems obvious that peoples humann rights have been grossly violated over the course of time..and it seems obvious that babies should not be subjected to this kind of surgery...i hope that over time these practices will stop and my wishes for healing are with anyone who has been damaged by these practices,

I have heard a chance to study with a student who had undergone such surgery in mbarara university. this "guy" must have been a woman but i think due to the involuntary surgery that was don with out his concent his is now nursing the pain of having to life his entire litetime have a feminine body but male organs. We all should stand out for this injustice to stop. it is causing so much pain in the lives of the victims. why should doctors and parents decide in such a very life threatening matter. please whiever is performing such operations should stop with immediate effect and give chance for the child to decide when they are old enought to give informed concent.

the issue is about ethics.at all cost when your a child parents are responsible.so if the operations are done wirhout the parents consert therefore physicians are to blame.i would like to asuggest let natural take its charge.

No child or human being for that matter should have their genitals operated on for cosmetic purposes without being the fully informed first AND giving their own consent. People born with DSD , Herm', Intersex coniditions are no less intelligent, emotional or human than people born with typical genitalia, gonads, hormones, and or chromosomes ; and also be aware this does not just happened to genitalia, but breasts too, some kids that show atypical DSD / intersex development at puberty during secondary sexual development can go unsupported if not cared for due to no support from a contemporary specialist and CARE pathway- this is also neglectful and very damaging- emotional and often psychological support for the person and their family is always needed as are quality understanding contemporary support groups (people have a freedom of use of voice and many affected people I know use differing terms to describe their condition or them). AIC, AISDSD.ORG (Interact) , DSDfamilies.org, AISSGUK.org are great established support groups for the young and the family of affected people. Lobbying and advocacy is carried out by these groups and others such as Intersexuelle Menschen and intersexuk.org
Progression comes from intelligent education on all levels schools to government; responsible media and positive lobbying also matter. Reach out and support. We are all human and should always have our human rights intact. Holly (Intersexuk). AIC we are proud to support your incredible work. Great Article.

We applaud the power of advocacy here. It has taken years of research, data and advocacy for abused intersex patients to speak up to affect change. As spousal caregivers of intersex patients, we ask for an inclusive approach when an intersex patient decides to go through surgery during a marriage. The spousal caregiver has lack of information, lack of access to resources, and lack of informed consent. Family caregivers care for a loved one out of love; it is a violation of basic human rights by excluding them or shunning them.

When it comes to genitalia and gender, Nature sometimes drops the ball. The people to whom this happens deserve our sympathetic understanding, not surgery done without their consent. If a child can urinate freely, there is no reason to operate on its genitals, no matter how unusual their appearance. It's that simple.

I come to this topic because of the American refusal to accept the foreskin of the penis. I am one of the intactivists, so called, and have urged for years that the remit of intactivism be broadened to include respect for the intersex.

I need someone to help me I was born intersex. Doctors ignore me they won't even look at me monthly menstrual cycles I'm a very well built male. Major scar between my legs. I need someone to email me that can help me get help. I need support group and cannot find oneanybody can help me send me an email.

I just found out today 9/18/14 that I was born an intersex or hermahodite. My life was splayed open on 8/6/69 when I was 10 years and 6 months old. I was born that way, I was also born with a deformed right right ear and the surgery was performed until that guise. Right now I do not remember ma;ny specifics, but as the minutes pass my human exsistance such that it was, was not the reality. I am fifty some years old and have always questioned my very reason for being on this earth. Scarred, bruised and beaten for being intersex by not only family and society. I have hope today that through the knowledge i have gained on this website and will explore others.I know now that I have a voice and am not just a faceless victim of this horrific abuse! My experience,strength and hope is not in of myself because I tried to handle it my way the human way without God. Furthermore, I know now as I have always known that victimization is a choice not a end result of our struggles here on earth.If this will help ease one persons pain today the victory is Christ's and His alone.

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