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Do No Harm: Intersex Surgeries and the Limits of Certainty

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The Southern Poverty Law Center and Advocates for Informed Choice have filed a lawsuit against the South Carolina Department of Social Services (SCDSS), Greenville Hospital System, the Medical University of South Carolina, and several medical personnel for allowing physicians to remove the atypical genitals of a 16-month-old toddler because that child, in the state’s custody at the time, was born with an intersex condition. M.C. had been identified male at birth, but his genitals were sufficiently indeterminate that surgeons removed his ambiguous phallus, a testis, and testicular tissue on one gonad, and surgically created an ostensible approximation of female genitals. The suit asserts that there was no medical need for this surgery, which was meant to permanently “fix” this child and turn him into an unequivocal girl, but it did him more harm than good. M.C., now eight years old, feels more like a boy, lives as a boy, and heartbreakingly has asked his mother, “When will I get my penis?”

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8-year-old M.C. identifies as a boy.*

This sad situation is reminiscent of another case in which the patient, also an orphan, had no parents to advocate on his behalf and underwent similar genital surgery for no medical reason. Frank, a seven-year-old boy was admitted to the Johns Hopkins Hospital in October 1925, diagnosed with undescended testicles and hypospadias, a condition where the urinary opening is underneath rather than at the tip of the penis. In addition, Frank had a short vagina, leading physicians to believe that he was actually a girl. When they did exploratory surgery they found an ovary on one side, confirming their suspicions. What was once seen as a boy’s penis was now seen as an enlarged clitoris. Doctors now considered Frank to be a girl, and they advised the orphanage to change his name from Frank to Frances and rear him as female. The fact that the child was an orphan probably made it easier for the doctors to convince his guardians that surgery was necessary, but even parents face overwhelming pressure when confronted with physicians’ seeming certainty over the correct course of action.

No surgery was performed initially on Frances. However, when Frances returned to the hospital two years later complaining that the “clitoral appendage” was annoying to her, doctors mentioned that she had a “terrible habit” of masturbating, and so they amputated it. A few years later, Frances returned, complaining of pain. She told her doctors that when she turned eighteen, she was going to learn a mechanical trade and live as a man. Worried about this seeming challenge to their previous decision, more tests were done, and it turned out that since Frances had some newly discovered testicular tissue, physicians agreed that perhaps he was really a man all along. As for his genitals, it was too late to alter them because the penis/clitoris had already been removed.

oathFrances changed his name to John, clearly stating that he wanted to live as a man, but that didn’t stop his doctor from speculating, “If implantation of ovaries ever becomes successful in the human should this be done?” One wants to scream “No!” at the case report; “Please, let John live his life as a man without any further medical scrutiny and unnecessary intervention.” Even though the doctor admitted that John seemed happily male, he still wondered about ovary implantation to force John to live as Frances against his own wishes. The mistake of the excised penis would then be negated, but at the expense of John’s inclination.

Many of the news sources surrounding the recent case of M.C. have reported that damaging surgeries such as these have been happening since the 1950s. While it is true that during the 1950s infant surgeries became standard protocol, interventionist surgeries to “repair” ambiguous genitals and to change people into the supposed “correct” gender began long before the 1950s. The earliest case I have found was in the 1840s, when a three-year-old girl’s undescended testes were removed because the physician was worried that when they matured, they might cause her to become sexually attracted to other women rather than to men. Throughout American history, fears of homosexuality have motivated intersex surgeries, as some physicians wanted to make sure that patients were certain of their sex so that they wouldn’t be attracted to the “wrong” sex.

What makes dealing with intersex especially complex is that parents are often asked to make decisions regarding their child’s body. Of course, parents want what is best for their children. They want them to be happy, and they want them to grow up without being teased or ridiculed for having an unusual body. Parents’ worries might be unfounded. M.C., for example, has recently told his classmates about his ordeal and has received nothing but support from his peers. Would parents consent to “normalizing” surgeries for their child if they were informed of likely negative consequences? Of course, there might be an underlying metabolic concern that needs careful medical attention, but often the issue is merely aesthetic or social. M.C.’s parents are asking, and we need to ask ourselves, if loss of sexual sensation, incontinence, scarring, sterilization, the emotional trauma of surgery, and the risk that the child might not want to live as the surgically-assigned gender are all worth the effort to superficially normalize bodies.

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Since the late-twentieth century, attitudes towards these surgeries have begun to change, largely as a result of intersex activism that started in the 1990s. If, as a society, we felt more comfortable with difference, we might not be so eager to surgically repair bodies that don’t actually need repair. It is possible to choose a gender for a child born with ambiguous genitalia and still decline surgical intervention. If M.C.’s parents win their pathbreaking lawsuit, then perhaps physicians will have further incentive to hold off on irreparable surgeries until the children are old enough to have a say in what they want their bodies to look like.

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*After careful consideration, Nursing Clio made the decision to publish pictures of M.C., which are prevalent throughout several other media sources. MC, and his parents, are very open and honest about his gender identity and his medical ordeal. It is there hope that by coming forward with their story, they can prevent this tragedy from happening to other children.

For Further Reading:

 – Elizabeth Reis, Bodies in Doubt: An American History of Intersex (Baltimore: Johns Hopkins University Press 2009), chapter 4.

- Hugh Hampton Young, Genital Abnormalities, Hermaphroditism and Related Adrenal Diseases (Baltimore: Williams and Wilkins, 1937), 84-91.

- Katrina Karkazis, Fixing Sex: Intersex, Medical Authority, and Lived Experience (Durham: Duke University Press, 2008).

38 Comments Post a comment
  1. The Southern Poverty Law center has a link on their Facebook site to an interview with M.C.’s parents.

    May 17, 2013
  2. I remember reading a comic book last summer about a teenager who found out late in life that they were intersex but had grown up as a male the whole time. The main character decided to undergo surgery and live as a girl and ended up enjoying life that way. But that was her own choice, not the choice of doctors or parents! We should allow children to have a say in this, especially since we can end up being wrong about the child’s preferred gender that early on.

    May 20, 2013
  3. There’s so many reasons NOT to do surgery like this. Who knows how the kid is going to identify when they grow up? They’ll sense the lying and coverup around them — kids always do — and react to the absence of some life event that they somehow know exists. And jeez, who operates on ANY body part that changes so much over a person’s life? Doctors think twice about operating on relatively simpler parts like feet, arms, and jaws in order to let the body finish growing so that they aren’t aiming at a moving target!

    Even if this surgery were acceptable (which I doubt), I cannot fathom actually doing it, altering a body part that changes so much over a person’s life while the person is still in diapers.

    I have never once heard of an instance of this surgery being performed where the person who underwent it says, “Best thing that ever happened to me!” Not once. I’m certainly not an expert at all and I’m prepared to be proven wrong, but it sure seems like it’s ham-handed, clumsy, and results in physical and emotional pain and dysfunction 100% of the time.

    May 20, 2013
  4. Wow…scary stuff. Our lives are complicated enough without having to deal with something as difficult as that on top of it all.

    May 20, 2013
  5. It is heartbreaking. Much therapy will be needed.

    May 20, 2013
  6. Human beings have the right to choose their own sexual preference, their own religious beliefs, and their own political alliances without anyone forcing it upon them. I look forward to seeing humanity embrace and socially reinforce this concept in my lifetime.

    May 20, 2013
  7. I feel for those that are born with these conditions. I am sure that the parents are making the decision with much thought and it must be a hard one to make. Don’t you think the parents have a hard time with this as well?

    May 20, 2013
    • Elizabeth Reis #

      Segmation: Absolutely — I think the parents of kids born with intersex have a really hard time, and they are trying their best to make the right decisions with limited information. In this case, the boy didn’t have parents to advocate for him, as this all happened before he was adopted. In general though, parents have had a very difficult time saying “no” to physicians who think that “corrective” surgery is the way to go.

      May 20, 2013
  8. Reblogged this on travelicious and commented:
    Careful considerations must be made before doing actions! Because wrong decisions can largely change lives of people.

    May 20, 2013
  9. Careful considerations must be made before doing actions! Because wrong decisions can largely change lives of people.

    May 20, 2013
  10. Amy Pond #

    People are dependent on medical professionals to advise them on the best course of action, and expect them to know what they are doing. A lot of parents will go along with what a medical professional advises against their own personal judgement, because they believe that the medical professional understands the issue best. A lot of trust is placed in them, and they have a responsibility to live up to that.
    Even if a gender is assigned to a child – which is understandable; a child without gender will not easily fit into the world – any gender-corrective surgery should be postponed until the patients themselves are old enough to be consulted, unless there is, for some reason, a health issue which needs to be dealt with. This arbitrary selection of an intersex person’s gender when they are babies, when we know that so much of gender is based in the brain (rather than just genitalia), is, I think, potentially very harmful.

    May 21, 2013
  11. Reblogged this on jamesharl – study and write and commented:
    Probably, it is just right to wait for the time where the child is fully aware of the situation and he already understands what life he wants to have. I think deciding the operation on behalf of the child when they were still babies is unfair. Hopefully, this report opens the eyes of the people involved in the previous operations and stops this type of mistake in the future.

    May 21, 2013
  12. In these situations, can they do a chromosomal test to discover gender?

    May 21, 2013
    • Elizabeth Reis #

      Chromosomes don’t always tell the whole story. Some people have mixed chromosomes — some XY, some XX, some XO. And others have chromosomes that seem to contradict other facts about their bodies. It’s way more complicated than we’ve been led to believe in basic science classes.

      May 22, 2013
  13. Wow. This was unbelievably interesting. I hope that articles such as this help convince parents and doctors to wait until the child can be part of the decision.

    May 21, 2013
  14. This is why medical schools need to teach their students better thinking skills. It’s no use we learn all about how to do a procedure and then rush into doing it instead of thinking of the social ramifications for the patient. Thanks for sharing this.

    May 21, 2013
  15. thank you for sharing this – very informative. it is such a shame that such decisions are taking assuming the best for the child but have gone bad – what makes of such kids who have been denied sexuality from birth? it is hurtful for the parents to have to go through it and see their kid live through it. how tragic!

    May 21, 2013
  16. How horrible for M.C.! I researched and wrote about this topic ten years ago while I was a junior in college. These children do not need to be “fixed”! They should be left the way they are born until the children are able to understand th consequences of the surgery. This surgery has affected so many intersex children negatively that it is ridiculous to continue on this course.

    May 21, 2013
  17. My 2008 novel The Sinkings deals with intersex treatment in the nineteenth century and in contemporary times. The issues you raise in the discussion of this sad and disturbing case are very much part of the contemporary strand of the story. (If you’re interested, here’s a link: http://uwap.uwa.edu.au/books-and-authors/book/the-sinkings/) The 2008 Consensus Statement on Management of Intersex Disorders (published in Pediatrics, the official journal of the American Academy of Pediatrics) advocates a more cautious approach to surgery than was seen in the second half of the 20th century, with a greater focus on genital functionality over cosmetic appearance, as well as a more transparent and active process of consultation with parents and guardians, but it’s clear there’s much still to be done. As you acknowledge, involvement of the intersex community has been (and continues to be) crucial in raising awareness and bringing about change.

    May 22, 2013
    • Thanks, amandacurtin — I will read your novel.

      May 22, 2013
      • I hope it’s of interest, Elizabeth, and thanks for this excellent article.

        May 23, 2013
  18. This is really disturbing. I hope M.C. gets a chance to still live normally.

    May 22, 2013
  19. That this practice still happens is scary to say the least. This is the 2nd case I know of where the medical profession has played God, They have no right to interfere unless the condition is life threatening. I was born intersex and it has lead to a lifetime of misery

    May 22, 2013
  20. Reblogged this on sourceofsolitude and commented:
    Not a topic Im familiar with but stresses the importance of protecting children until they can make their own decisions.

    May 22, 2013
  21. Sad and shocking but very informative. Thank you for sharing.

    May 23, 2013
  22. Twig Anthony #

    Reblogged this on Ramblings from Twig Anthony and commented:
    Would you want your gender to be assigned?

    May 23, 2013
  23. Helen McBride #

    There is a similar case going on in Kenya. The second ever law suit to do with an intersex child is ongoing. In this case, the child was denied a birth certificate (as officials put a ‘?’ instead of a ‘M’ or ‘F’ on the hospital records) and with it denied all human rights. Without a birth certificate the child is not able to join a school, get a passport, or most horrifically have a legal identity.

    http://www.the-star.co.ke/news/article-121590/intersex-child-5-sues-state-birth-certificate

    May 25, 2013
  24. due to a terrible mix up at the hospital, i was mistaken for a boy and doctors decided in their merciful wisdom to subject me to extensive surgery so i could look “normal”. as an adult, i’ve now realized that i am and was a duck, and would rather live as nature intended. however, i can never reclaim the beak and flippers and feathers that defined my true identity.

    May 26, 2013
  25. Reblogged this on Confessions of a Fat Slut and commented:
    Why are we so scared of ambiguity? Why must we choose to only display characteristics which correspond with our genitalia? I identify as a woman and enjoy being one (most days of the month) but I also was a tom boy when I was a kid who played with trucks, made mud pies, and got along with the boys better than the girls. Giving a child (infant!) major surgery that has life altering consequences FOR NO REASON other than to ease your own insecurities surrounding normalcy is BAD FUCKING PARENTING. Just let your kid live and one day they will decide how they want to express their gender identity.

    May 27, 2013
  26. John chigiti #

    Great suit.I filed a similar one in Kenya early one week after yours seeking The legal recognition and protection of baby A and all intersex children,moratorium on all none therapeutic surgeries,data on all intersex children inter Alia.
    The world has to hold hands and fight for the dignity of the intersex children.
    Although South Carolina might be miles away from Kenya Iam with you in solidarity M.C.,The Crawfords and Anne.Intersexual children and their Human rights know no boundaries nor religion.Lets solder on.
    This conversation is healthy.It is an awareness tool for the society.
    The intersexual child has come of age…we have to listen to them and give them their room.
    Good day world.

    May 28, 2013
  27. Hello – My spouse (auntjanescreations) found a link to this site on WordPress and gave it to me. I was quite surprised to find so many interested in this subject. I would like to add something to Elizabeth Reis article. What happens to a child that is badgered by its parents and physician to have sexual assignment surgery, even at seven? The argument is the same that Ms. Reis wrote about. If you don’t have the surgery you will be ridiculed and bullied in school. A choice must be made because this is a binary world. Then what happens to the child that is surgically assigned a male body, put in male clothes, but is a girl inside? And, especially if the child believes that “he” is a boy now that the surgery has been done?

    The other children know that “he” is a girl no matter what “he“ is wearing. What’s it like to not just be the last chosen to play games, but not to be chosen at all and be ostracized, physically, and mentally abused? And, to have this follow “him” all the way to graduation from high school! I can tell you, it feels like dirt and it affects every aspect of your life. The fear of being discovered as a being intersex and really a girl eats into you, even to your senior years. I have found that the argument of; if you don’t have the surgery you will be ridiculed and bullied in school, turned out to be an absolute lie to me. I would give anything to be ridiculed for what I am, than what someone else wanted me to be and live my life out as ME. Thank you for your time, Ephie – an Intersex to male to female Transsexual.

    PS: What I am trying to emotionally say is that this part of the MD’s rational is not empirical. They are wannabes playing at being a psychologist with a knife and without a single study or unbiased follow-up to back them up.

    May 30, 2013
  28. This is an amazing story. Creating aesthetic penis is common hear for transgender cases, but this is the first I have heard of it in a situation like this.

    May 30, 2013

Trackbacks & Pingbacks

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