Letter to parents of children with congenital adrenal hyperplasia and “ambiguous genitalia”.
By Laura Inter
Translated by Laura Inter. Edited by Hana Aoi.
*For purposes of this letter I used the word “girls” and she/her pronouns for people with CAH and XX chromosomes, just to make it easier for parents to read. However, be aware that not everyone identify themselves as women and some might even prefer they/them pronouns.
It is common that doctors tell to parents of girls with Congenital Adrenal Hyperplasia (CAH) –and XX chromosomes– that their children were born with “genital malformation” or “ambiguous genitalia” and must be “fixed”, otherwise they will have infections, pain or other problems related to the menstrual flow. Doctors also say that because their children have a different body, they’ll end up rejected and isolated at school, among other social issues.
I have a body like that described by doctors. The first thing I want to say is that “ambiguous genitalia” is not a malformation. Your daughters were simply born with intersex traits, their bodies vary from the average body of a female, but they are NOT malformed women.
It isn’t a malformation because the genital forms depend on testosterone levels during gestation. All fetuses –despite their chromosomes– at some point during gestation have the same genital forms. When a fetus is exposed to “low” levels of testosterone, it develops typical feminine genital forms; on the other hand, if the fetus is exposed to “high” levels of testosterone, their genitals will take –so to speak –male appearance. It’s when they stay in an intermediate state in this process that doctors say babies are born with “ambiguous genitalia”. But actually there’s nothing wrong; it’s not a malformation because it’s part of a natural process that depends on testosterone levels. As simple as that.
It’s unknown if ALL people born with “ambiguous genitalia” will develop health problems related to their genitals, at some point of their lives; what I can say for sure is that in Mexico (where I do my labor), as well as in other places in Latin America and around the world, I’ve known many people with “ambiguous genitalia” who weren’t surgically intervened and they’ve grown into adulthood, and they are completely healthy, never having had any health problem related to their genitals. No pain, no problems with menstrual flow, no infections. I myself count among those people.
Of course, I can’t say that ALL people born with “ambiguous genitalia” will be healthy from their genitals throughout their whole lives, just as I can’t assure that ALL the people born with typically female or male genitalia will be healthy from their genitals throughout their entire lives. Neither can doctors make such statement, that ALL people who has undergone genital surgery are healthy from their genitals. In fact, the evidence tends to point to the opposite; I know many people who underwent genital surgery (particularly clitorodectomies and vaginoplasties) who, as a result, have suffered from many health problems. It is hard to conclude something definitive because, unfortunately, there are no follow-up studies in adults who were born with “ambiguous genitalia”, so even doctors don’t have a say on the long-term outcome of their procedures.
I don’t think it is appropriate to intervene the healthy body of a baby. Obviously if there are health problems in their genitalia, whether they are typically female, typically male or in between, medical intervention is recommended, but only to restore health. It isn’t coherent to intervene surgically healthy genitalia only for “cosmetic” reasons.
Surgeries not only cause psychological damage, these procedures also have physical repercussions. A clitoral reduction can leave your child with no sexual sensation or significantly reduce it. A vaginoplasty is not a “simple surgery”, as some doctors put it, but a major procedure in the body of a little child; in addition, after vaginoplasty, doctors will perform dilations, which mean they will have to introduce dilators (a sort of dildos) into the opening that they’ve created. The doctor will introduce them, maybe a nurse, or even they’ll propose that you do it. I have known people who have gone through such “treatment,” and it caused them psychological damage comparable to a rape experience.
Unlike doctors who treat your child, I believe she has a perfect body. If the problem is social rejection or isolation, don’t you think it’s more reasonable to act and make this society more tolerant and open instead of opting for irreversibly modifying the body of your little girl? Furthermore, you can educate your daughter to embrace and love her body as it is, not to teach her that every time society criticizes her body she should run to the surgeon. If she wants surgery, it must be up to her to decide once she’s older, getting all the information available and evaluating the possible consequences of those procedures. In support groups for parents and people with CAH, I have sadly found that many parents want to perform surgeries on their children to avoid criticism from their relatives or even from the nursery staff. To this, I say: people will always criticize everything, anything, and you can’t please everyone all the time, and least of all consenting surgeries in the body of the little baby in your care. A surgery will definitely solve nothing, nor will make your little girl “normal”, just because there is nothing abnormal with her. She is perfect and beautiful as she is, so love her as she is and teach her to accept and love herself as she is, because there’s nothing wrong with her or her body. Surgeries to shape of their genitals are medically unnecessary, they are just “cosmetic”, and yes, I put it in quotation marks, because the body of your daughter is already cosmetic as it is, it is beautiful.
Apart from this, there’s the point of the gender identity she will have when she grows older. That is something that no one but her can know while she’s growing. Your daughter may feel like a woman (female gender identity), but I also know people with CAH and XX chromosomes who feel like boys (male gender identity, they count for about 20 or 30 percent of people with CAH, as I’ve observed in my experience working with them), and it doesn’t matter if they undergo genital surgery or not. You also can’t anticipate what sexual orientation your daughter will have, it may be homosexual, bisexual or heterosexual. I have also found that many parents comment that they perform these procedures on their children to “enable” them to get a partner in the future, to avoid rejection of their possible partners, but regardless of the sexual orientation your daughter may have, the person that may became her partner must love her as she is, and if they don’t, why do you want a person with prejudice by her side? Why would your daughter want someone who will only will love her if she changes her body through surgery? The surgery is irreversible and only your daughter can take the decision modifying her body if she wants to, with full awareness of the consequences that these procedures may have.
I know from the testimonies I’d heard from some people with CAH, that surgeries can cause a number of negative consequences such as: problems with urination, lack of sexual sensation, scarring, pain when having intercourse, problems with menstrual flow; some people suffer from psychological trauma due to frequent genital examinations (sometimes they call several doctors to see the naked body of your little girl, and this is something that go on for years), and may suffer other traumas due to the vaginal dilations performed by doctors, nurses or by yourselves. In addition to the obvious risks that every person runs when exposed to anesthesia at any kind of surgery.
It is always wiser to teach your daughter to love herself as she is and wait for her to make the decisions that she believes are relevant to her own body, because it is HERS, NOT YOURS nor anyone else’s, and if her health is not at risk, no one have to irreversibly modify anything in her body.
I have a body similar to your daughter’s, with “ambiguous genitalia” (clitoris larger than what doctors arbitrarily consider “normal” and with an urogenital duct –the vagina and urethra ends in the same duct). Despite what doctors may say, I don’t have any health problems related to my genitals, I don’t have recurring infections, pain or problems related to my menstrual flow, and I enjoy sexuality without problems. Always bear in mind that sexuality isn’t synonym of penetration, and it can be enjoyed in many ways. I also have no social problems because I of my atypical genitalia, besides we don’t go naked in daily life. I’m 33 years old and I feel happy with who I am and with the body I have. If I had problems in the past, it was because of the humiliating treatment doctors gave me, denigrating language they used to refer to my body and the ignorance of my parents at the time.
Remember that one thing is the treatment for CAH, and another thing is that your daughter has genital variations; the treatment for CAH is important, it is important that your daughter take her medication if she needs it to be healthy, but genital variations, in the vast majority of cases, don’t involve health problems.
Broadly speaking, CAH occurs when the adrenal glands produce less cortisol than what the body needs, which is why doctors prescribe a variable dose of cortisol (the form of cortisol I was prescribed was Meticorten). Some need small doses, some higher, some only take it for a brief period of their life, others need it for all their lives, and I have met some people with CAH who never have taken cortisol and are healthy, so it depends on the person and the type of CAH (wasting salt or not wasting salt form, and even within these two the influence on health varies from person to person). It is important to mention that you have to be careful with the doses of cortisol administered, since I have found that many times a doctor prescribes a high dose of cortisol, inducing Cushing Syndrome (that is when the body is exposed to more cortisol than needed). The doctor always has to start with the minimum dose of cortisol, and if it isn’t enough, increase the dose, always in order to avoid Cushing’s. It is not typical of CAH, more usually is a result of a poor medical management or from a bad administration of cortisol doses.
As a conclusion, I wish to tell you that girls with CAH don’t need surgeries; they need loving parents, they need support and information, they need parents who are not ashamed of their children bodies and who love and teach them to love each other as they are. They need to meet people who have similar bodies, people who go through the same experience.
If you want psychological help, I can support you or put you in touch with local organizations that can listen to you, with real professionals that can help you and treat your child with respect, before making such an important decision. Take the opportunity to get in touch with us, my door remains open, for you and for any parent who is willing to offer their little ones a chance to love themselves as they are.
Anyone who wishes, can contact me through the email: firstname.lastname@example.org
Remember that you are not alone. And neither your child.