Help with paper on intersex in the newborn?

[divinegracie]

I am a midwifery student who has an interest in becoming knowledgeable about and providing health care to sexual minorities, including intersex people. I am female and am not intersexed myself, as far as I know. I have rarely heard the word "intersex" even mentioned or written about in obstetrics literature or in nursing magazines (big surprise, huh?). I am taking a class on Primary Care of the Newborn and am electing to write a 3-5 page clinical paper on a subject of my choice for an honors grade. In any event, I need to educate myself about intersex issues for my future professional life.

The readers of this forum are the experts -- most of you are intersexed, are highly self-educated on this subject, have experienced the worst of our health care system, and have the most to say on the issue, as far as I'm concerned.

I seek suggestions, references, anything at all, from you. How do you suggest I present this subject? Intersex is complex on many levels -- genetically, physiologically, culturally, ethically. It raises fundamental questions about gender/sex, sex roles and socialization, the medicalization of non-life-threatening conditions that don't fit a cultural "norm," boundary issues of physicians who advocate immediate genital mutilation to shocked and uninformed parents. My focus is the nurse's role as patient advocate ("patient" here including both parents and child).

This paper specifically is about:
"the purpose of this clinical paper is to give the learner an opportunity to choose a specific clinical neonatal condition ... to explore in more detail. It should include a description of the clinical problem, incidence, etiology, clinical findings (history and PE), diagnostic tests, management, complications, prevention and implications for nursing practice ...."

I would also appreciate references to other intersex websites, listservs and discussion boards.

Please email me directly at grace.loehr@<hidden>

Thank you so much!

[Sunshine1]

Dear Student:

Congenital adrenal hyperplasia is an adrenal gland condition and this link will be of help to you http://caresfoundation.org/

I realize that you don't know anything and the would intersex is used to describe external or internal characterics from umbrella of medical conditions. Some with conditions that cause intersex characteristics don't feel they belong in the male or female catagory but that may also be stated for people that don't have any medical conditions. I'm not an intersex person but rather someone that was born with external genitals because of a lack of the ability to make enough cortisol from the adrenal gland because of a genetic defect - the lack of 11 hydroxylase and others with CAH lack 21 hydroxylase- we take cortisone to correct this much like someone takes thyroid medication.

Congenital Adrenal hyperplasia is a life threatening condition. One needs cortisol in the body to help in times of physical stress- please read about something called adrenal crisis.

CAH happens to boys and girls. The boys look more well endowed upon birth because of the excess androgens unregulated from the adrenal gland and the girls externally present from typical looking external genitals to enlarged clitoris to appearing externally male but with no papable male testes. Females with CAH (21 or 11) have only female chromosomes, standard uterus, ovaries, and vagina. We can and do have our husbands children or in the case of the lesbian connection sperm donor would be used . Some of us need surgery to correct externally what the excessive androgens did to allow for a period to come through others have an enlarged clitoris that I think well they are lucky and the Endocrine consensus is rethinking about surgery for those particular cases.

The Pediatric Endocrinology Nursing Society http:www.pens.org/ has an article that might be of help to you http:www.pens.org/articles/kelton_intersex.htm

Emedicine great CAH info. http://www.emedicine.com/PED/topic48.htm

will write more ...

[Peter]

Hi divinegracie,

You might want to try contacting ISNA, which has an active Medical Advisory Board working on reforming medical education and the medical treatment of intersex children. As you are a medical professional concerned about improving the lives of intersex people, hopefully you will be able to make contact with other medical professionals who are appalled by many current treatment practices.

Peter

[Sunshine1]

How is the paper going?

[Jay]

you picked a very important topic, one that i hope will be studied more often in the future. the toughest part of your paper will be curtailing it to 5 pages; there are so many different types of intersex, and different aspects in dealing with them; some are life threatening, others are simply malformed.

i think that the first hour of an intersex baby's life determines the rest of it completely; if you study what could happen in just this short time, and how surgery is undertaken for cosmetically cultural reasons, and often this results in complete loss of feeling, and sometimes complete gender reassignment.

describe the consequences of mistakes in this hour, and how different types of intersex require different things; check my other posts, and you'll see i was thankfullly saved from gender reassignment, and grew up male--with a micropenis/enlarged clitoris, a psuedovagina, descended testes, but no sperm. you'll learn a lot here, and feel freed to personally message me. JAY

[divinegracie]

Haven't written the paper yet. I'm hoping I'll have time to actually write it! I'll post it here when I finish it. I'd love to get it published in a nursing magazine or journal about this subject. I started reading Anne Fausto-Sterling's Sexing the Body, and also have Hermaphrodites by Dreger. Thanks for everyone's kind words and support.

[divinegracie]

Damn. Were I doing this over again, I would have just written about, say, CAH. So I'm doing a very superficial overview of IS which I hope will reduce to 5 pages. The paper needs to take into account evidence based research on our topic, which in this case is easy: there isn't any! John Money and his followers have essentially been doing experimental surgery on children in accordance with an idea of how gender and sexual identity are formed. I think of the Nazis surgical experiments. People in our culture go into a moral panic at the drop of a hat over gender, sexual and orientation identity issues. I wonder how much Freud's ideas and the rigid gender codes of the 1950s influenced Money, and still influences parents who are freaked out at anything sexual or anything that (to them) hints of questioning rigid sexual stereotypes, or the fear their kid may turn out to be homosexual. I think there are lots of parents who today will go with early genital surgery, no matter what kind of options they are given, simply because of their conservative mindset. I wonder if anyone has tried to positively correlate conservative beliefs about gender roles and religious belief with higher discomfort with these sexual issues and how they influence decision for early surgery. And if these are the same parents who will physically and emotionally abuse, disinherit, and kick out of the house any children who identify as LGBT ...

Just venting a bit and trying to avoid studying.

[Betsy]

It's quite a revelation once you realize there is no empirical research justifying surgery, isn't it?

I wonder if anyone has tried to positively correlate conservative beliefs about gender roles and religious belief with higher discomfort with these sexual issues and how they influence decision for early surgery.

You'd probably be surprised to learn that many with deeply held religious beliefs tend to disfavor surgery. It has to do with respecting the body the child was born into and the whole feeling that a higher spirit controls it all.

Overall, having interacted with many parents, I tend to think it's more of a comfort with sex--as in fucking. Those who have good sex lives tend to turn away from surgery on their children because they value the enjoyment of sex--and not surprisingly, many with strongly held religious beliefs do like sex. Those who claim an orgasm isn't that great (probably because they don't have them often for whatever reason) will favor surgery more.

[divinegracie]

You'd probably be surprised to learn that many with deeply held religious beliefs tend to disfavor surgery. It has to do with respecting the body the child was born into and the whole feeling that a higher spirit controls it all.

Overall, having interacted with many parents, I tend to think it's more of a comfort with sex--as in fucking. Those who have good sex lives tend to turn away from surgery on their children because they value the enjoyment of sex--and not surprisingly, many with strongly held religious beliefs do like sex. Those who claim an orgasm isn't that great (probably because they don't have them often for whatever reason) will favor surgery more.

Your points are good. I was thinking more of conservative, fundamentalist christian beliefs. This was brought up in at least one article. One MD used parental religious beliefs and conservativeness and discomfort at gender ambiguity as a reason to justify surgery on account of the fact they would be more likely to reject an "abnormal" child. That's a real life good point, but .... I think you are right on that the difference is whether or not the parents have good sex lives or are comfortable with sex, period. I will phrase my future statements in this way! I think discomfort with most things sexual leads to many problems within individuals, and in society. I'm sure there's little research on many issues of sex and sexuality, such as this one ...

I finished that paper, and think the instructor liked it. She passed it on to someone else. Who knows, I may be the first nursing student there to talk about this issue.

Everyone have a happy holiday and I hope you have a loved one to share it with!

[maxkwak]

Hello, Divinegracie!

Here is a link that my be useful to you regarding Androgen Insensitivity Syndrome (AIS), if you haven't already come across it: http://www.geneclinics.org/profiles/androgen/details.html

Most online discussions divide AIS into two categores, complete (CAIS) or partial (PAIS) androgen insensitivity syndrome; however, the link above is the only source that I've found that also lists mild androgen insensitivity syndrome (MAIS).

What this means not only for AIS people specifically, but for intersex people as a whole, is that we comprise a very broad spectrum of humanity with a myriad of conditions. Perhaps two things unify us, however: (1) our status as sexual minorities and (2) our too-frequent experience of medical tyranny in our lives.

I hope this link will be helpful to you. Good luck with your paper and bravo for taking on this project.