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For Parents: When Your Child is Intersex

May 19, 2015

For Parents: When Your Child is IntersexWhen Carol and Adam had their baby, they were overjoyed. But when friends asked them if they’d had a boy or a girl, they didn’t know quite how to answer.

Their baby, whom they named Cameron, was genetically a boy. He had an X chromosome and a Y chromosome. (Girls have two X chromosomes.)

But he had incomplete androgen sensitivity syndrome, which meant the cells in his body didn’t respond properly to testosterone and other male sex hormones. So in many ways, he looked more like a girl.


For parents: when your child is intersex. Here's some support. (Click to tweet)


Cameron was an intersex child. The word “intersex” refers to disorders of sex development (DSDs) – when a fetus develops differently from a typical male or female. It’s actually an umbrella term for many different conditions, such as:


·         Vaginal agenesis.A girl is born with either a partially-developed vagina or no vagina at all. Some girls with this condition are also born without a uterus.

·         Penile agenesis. A boy is born without a penis.

·         Congenital adrenal hyperplasia (CAH). Malfunction of the adrenal glands lead to an overproduction of male sex hormones. CAH may not be detected at first in male babies, but female infants may have male genitalia or ambiguous genitalia (both male and female).

·         Klinefelter syndrome. Boys are born with an extra female chromosome (X) and do not fully develop masculine characteristics.

·         Swyer syndrome. Genetically male babies have female genitalia and female reproductive organs. Their gonads (testes or ovaries) are not fully developed.

·         True gonadal intersex. Babies are born with both ovarian and testicular tissue. They might have one ovary and one testis. Or, they may have one gonad that is a combination.

Some intersex conditions are noticeable at birth, but others don’t become apparent until the child reaches puberty or adolescence. Vaginal agenesis, for example, might not be diagnosed until a girl’s teenage years. Often, it is detected when a girl does not menstruate.


What causes intersex conditions?

Intersex conditions start when a baby is still in the womb. As we’ve seen above, they can be genetic, linked to problems with chromosomes. They can also be hormonal. Either the body produces too much or too little of a particular sex hormone or it doesn’t respond to the hormones correctly.

Can surgery help?

Some parents wonder if immediate surgery to make an intersex child “look normal” is the best route. But many experts tell parents to wait.

Genital assignment surgery can be difficult – and sometimes impossible – to reverse. And there have been cases in which a child has genital surgery but grows up to feel more attuned to the opposite gender.

The Intersex Society of North America (ISNA) recommends taking all diagnostic information into account and assigning a gender to the child based on what parents and clinicians think the child will feel as he or she gets older, without surgery. The ISNA stresses that such an assignment is “preliminary.”

The ISNA explains it this way: “Note that gender assignment does not involve surgery; it involves assigning a label as boy or girl to a child. (Genital ‘normalizing’ surgery does not create or cement a gender identity; it just takes tissue away that the patient may want later.)”


What can parents and family members do?

·         Seek support. Support – from a medical team and from others who have been through the experience – are important for families and for intersex children themselves. Your pediatrician can refer you to appropriate groups in your area. Families may feel more comfortable sharing ideas and discussing pitfalls outside of a doctor’s office. Children can also learn from each other and talk about school, gym classes, or scouting trips.

·         Be honest with your child. It’s natural for children to be curious about their genitals and wonder why theirs doesn’t match those of their parents. Explaining the situation with age-appropriate language, with love, reassurance and support, can help them understand. Therapists can help parents find this language.

·         Be honest with others. Some parents feel embarrassed or ashamed for having an intersex child. They may avoid having a babysitter or feel anxious about gossip in the community. Being honest can help educate your neighbors and friends about intersex conditions and may help them develop more sensitivity, if they are unkind. And often, communities embrace the children and their differences with no problems at all.

·         Let the child decide, if possible. Many experts believe that children, once they are mature enough, should play an active role in their gender assignment. They often know best whether they feel like a girl or a boy.

To learn more about intersex conditions, please see the following links:

Disorders of Sex Development

Disorders of Sex Development for Boys

Vaginal Agenesis

Print this article or view it as a PDF file here: For Parents: When Your Child is Intersex


American Psychological Association

“Answers to Your Questions About Individuals With Intersex Conditions”


The Atlantic

Greenfield, Charlotte

“Should We 'Fix' Intersex Children?”

(July 8, 2014)

Associated Press via Daily News

“Surgery to choose gender no longer only option for intersex children”

(April 17, 2015)

International Society for Sexual Medicine

“What are disorders of sexual development (DSDs)?

Intersex Society of North America

“How can you assign a gender (boy or girl) without surgery?”

“What does ISNA recommend for children with intersex?”

“What is intersex?”



(Updated: August 22, 2013)

Properzio, Linda

“What to Do if You Have an Intersex Child”