Information about differences in sex development for patients and families.

Parents with Newborns

Atypical Genitalia

Congratulations on your new baby.  Our team meets lots of families every year where there is some concern regarding some aspect of their baby’s development or genital appearance. So while you may be feeling confused at the moment, please know that your baby is not alone in having this variation and things are going to be OK.   Don’t forget to take the time to enjoy and cherish your baby, for all babies are different and will develop their own personality and character.

Differences in genital appearance can happen for a number of reasons that may be to do with differences in the development of the ‘gonads’ (testes or ovaries), or hormonal signals that are responsible for the development of the genitalia during pregnancy, or may be a chance development.  For some babies, this may mean that it is not obvious from looking at the genitalia whether your baby is a boy or a girl. The team will work with you to work out your baby’s sex, but sometimes we need a bit of extra information to work with you to make the best decision for your baby.

Guides and information sheets for parents of children with ambiguous genitalia.

Ambiguous genitalia - DSD families website

Australian AIS Support Group: Atypical Genitalia Parents Guide

Prenatal genetic screening and determining the sex of your baby

There are numerous prenatal screening tests available for expecting parents, sometimes these tests are used to predict the sex of your baby. Maybe you had a prenatal test that suggested your baby was a boy, but when your baby was born they did not match the sex you were expecting.

These differences may mean that it will take a little longer than usual to decide the sex of your baby. Doctors will work with you to make the best decision for your baby, as the parents, you play an important role in this process. 

“When our baby was born the sex was not what our prenatal test indicated ” - resource for parents.

If a prenatal screening test has suggested that there is a variation in the sex chromosomes -  The Australian X and Y Spectrum Support

General resources:

General support and counselling services

Headspace – National Mental Health foundation.

Domestic Violence Resource Centre Victoria .

Cool Kids – Anxiety & ASD 

Bridge Builders – Youth Organisation

Information about puberty

Center for Young Women's Health &  Centre for young men

Health direct - Puberty for girls &  Health direct - Puberty for boys

Puberty - Family Planning Victoria

The Hormone Factory

Peer networks and resources

There are many peer support groups and online resources available for families. 

For general information about Differences/variations of sex development for families 

dsdfamilies - Individuals with AIS gonadal dysgenesis, 5 Alpha reductase, 17B HSD, Bladder Exstrophy, and Cloacal anomalies  

dsdteens - Although this website is designed for teens, there is clear information that is relevant to both families and individuals. 

dsdLife

Boston Hospital: GeMS program

DSD Genetics

Accord Alliance

Urological Society of Australia and New Zealand

Australian Paediatric Endocrinology Group

Genetic Support Network of Victoria

Androgen Insensitivity Syndrome (CAIS & PAIS)

AISSG - AIS Support Group Australia

American  AIS Support Group

Klinefelters and X & Y chromosomal variations

The Australian X and Y Spectrum Support

Resources and research at the Children's Hospital Colorado :  eXtraordinaryY Kids Clinic & X & Y chromosome Research

Turner syndrome & variations

Turner syndrome association of Australia 

Turner Syndrome Support Society UK

MRKH (Vaginal Agenesis / Uterine agenesis / MURCS and others)

Centre for Young Women’s health

Australian Support groups:  Beautiful You &  Sister for Love MRKH foundation 

The happy V

Hypospadias

RCH Kids  Hypospadias information 

Urology Care foundation. The official Foundation of the American Urological Association

American Support group - Accord Alliance 

Congenital Adrenal Hyperplasia

Parental support and resources:  APEG CAH leaflet 

CAH Support group Australia 

(UK)  Living With CAH 

(USA)  Cares Foundation  

(UK) CAH Education and support network.

General information for young people

DSDTEENS 

National LGBTI+ Health Alliance 

InterACT youth - Intersex youth organisation (US)

OII – Intersex Australia

If there is a peer support group that you are aware of that we have not mentioned here please contact the Clinical Coordinator on (03) 93457033 or  The RCH Department of Endocrinology

Or the RCH  Department of Paediatric and Adolescent Gynaecology