Management of Infants with Intersex Conditions

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These articles include both medical papers and articles published in the popular media.  Click on any of the headings to see the full article.

To see the outline of the way we feel children with intersex conditions ought to be treated, click here (pdf version).

Paediatric Surgeons from the Royal Children's Hospital Melbourne have published a paper supporting the practices they are currently involved in reviewing.  Is there are conflict of interest?  Is their hypothesis sustainable? 

 

Tuesday, 17 September 2002

Anna Salleh - ABC Science Online

http://www.abc.net.au/science/news/stories/s675847.htm

A long-term study of intersex adults, who were born with genitalia that made it difficult to know if they were a boy or a girl, has furthered the controversy about current treatment practices.

- An article about the study by the ABC is available here.  

"First, Do No Harm" - The Fiction of Legal Parental Consent to Genital-Normalizing Surgery on Intersexed Infants. Yale Law and Policy Review 19 (469).

"Surgeons who perform genetic normalizing surgery, whether on an emergency basis or at the behest of the intersexed infant's parents, should be aware that, because genital-normalizing surgery is not necessary nor proven beneficial for the infant with clitoromegaly or micropenis, the required elements of legal informed consent are likely to have not been met. In light of the questionable scientific basis behind its use, the lack of follow-up data on its benefits, and the overwhelming evidence of its negative physical and psychological results for many intersexuals, a moratorium should be declared on the use of defenseless infants as the experimental subjects of genital-normalizing surgery."

http://www.ananova.com/yournews/story/sm_502700.html

Dr Catherine L Minto, MB ChB, Miss Sarah Creighton, MD
MRCOG & Mr Christopher Woodhouse, FRCS. 

University College London Hospitals, Department of Urology and Obstetrics and Gynaecology, London WC1E, UK.

BACKGROUND: Current management for intersex conditions includes clitoral reduction surgery for those patients with ambiguous genitalia who are being raised female. Evaluation of this management is difficult due to the scarcity of long term outcome data looking at sexual function and other outcomes.

METHODS: This was a questionnaire study combined with a retrospective hospital notes review. The questionnaire comprised detail on diagnosis and treatment along with a modified sexual function inventory (GRISS) which provided scores encompassing seven areas of female sexual function. All hospital notes were collected and analysed for diagnosis and surgical detail.

All respondents were invited for clinical examination.

RESULTS: 37 intersex women, over 18 years old, all with ambiguous genitalia at birth or in childhood, completed the questionnaire. 11 were patients, 26 were recruited through the UK AISSG (Androgen Insensitivity Syndrome Support Group). 16/37 (43%) attended for a clinical examination. 10/37 (29%) had had clitoral surgery deferred and so had currently not undergone clitoral surgery, of which 1/10 (10%) had never been sexually active. Of the 27/37 (73%) who had undergone clitoral surgery, 9/27 (33%) had never been sexually active, leaving sexual function data on 18 subjects who had undergone clitoral surgery and 9 subjects who have virilised female genitalia and have not undergone clitoral surgery. Mean global sexual function scores were worse in the group with clitoral surgery. On looking at orgasm scores alone, the group with clitoral surgery had scores significantly abnormal for difficulty with orgasm, with 5/18 (28%) having complete anorgasmia.

CONCLUSIONS:  This study shows that clitoral surgery can damage adult sexual function.

*********************************************

Miss Sarah Creighton MD MRCOG, Dr Catherine L Minto MB ChB & Mr Stuart J Steele FRCOG & FRCS. 

Department of Gynaecology, University College London Hospitals, London WC1E, UK.

BACKGROUND: The immediate aim of feminising genitoplasty in the management of ambiguous genitalia is to make the cosmetic appearance look as female as possible. In the long term the vagina must also be adequate for menstruation and intercourse. There is increasing awareness amongst patients and clinicians that the outcome of this surgery may be unsatisfactory. This study evaluates the cosmetic and anatomical outcome of feminising genital surgery.

METHODS: 45 girls were examined under anaesthetic. All had undergone reconstructive genital surgery in childhood for intersex conditions.  The external cosmetic appearance was evaluated and a recommendation made as to further intervention. In all cases previous surgical notes were reviewed.

RESULTS: The age range was 7.5-19.5 years (mean 15 years). The cosmetic result was good or satisfactory in 62% of patients. However, in 98% of patients further intervention was deemed necessary. Of these, 23% required dilators and 77% surgery. 60% had undergone one previous procedure. The rest had two or more prior genital operations and one child had undergone six prior genital procedures.  All patients who had undergone prior vaginoplasty required further treatment to the vagina.

CONCLUSION: Most children undergoing feminising surgery require further treatment in puberty and this must be made clear to the parents. Vaginal surgery should be deferred until puberty unless there is a risk of haematocolpos. The requirement for clitoral surgery should be carefully considered on an individual basis.

http://www.baps.org.uk/documents/Intersex%20statement.htm

By:  

Kenneth Kipnis, Ph.D.
Department of Philosophy
University of Hawai`i at Manoa
Honolulu, Hawai`i 96822

Milton Diamond, Ph.D.
Department of Anatomy and Reproductive Biology
Pacific Center for Sex and Society
The John A. Burns School of Medicine
University of Hawai`i at Manoa
Honolulu, Hawai`i 96822

Guidelines for dealing with individuals with ambiguous genitalia.

By:

Milton Diamond, Ph.D. &

H. Keith Sigmundson, M.D.

Poem By Graham.......

We have feelings too you know?

Not that the medics care

They couldn’t care less about how we feel

As they poke and prod and stare

 

A decision is made that will shape our lives

They like playing God you see

They think that surgical correction

Will be all that we will see

 

The decision is made when we have no say

They’re doing what’s best for the child

If only they knew what pain they cause

That will one day drive us wild

 

Why don’t they leave us all alone?

Until we have a choice

The day when we discover

That we actually have a voice

 

To be a boy or be a girl

A sister or a brother

A choice that should be made by us

And not by any other

 

We have a right to be who we are

T be a husband or a wife

The choice is ours for us to make

Not a surgeon with a knife

 

Unless a case of life or death

Please try to leave us alone

Until the day when we can make

A decision of our own

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Last modified: April 06, 2003