By Laura Inter
Originally published in YOUTH & I magazine
I am writing this to provide some basic advice for parents of intersex children. But first, I would like to tell you a little about myself. I was born in Mexico City more than 30 years ago. I was born with genital differences – or what doctors call “ambiguous genitalia”. Fortunately, I wasn’t subjected to “cosmetic” genital surgeries, but I did experience very complicated and humiliating experiences with health professionals.
Over time, these situations led me to look for answers so I would not just be left with the little information and options that doctors gave me. This search led me to create Brújula Intersexual project (an intersex support organization in Latin America) and, thanks to this, to know the life experiences of many intersex adults. I have also talked with many parents of intersex children.
Due to these interactions, I have noticed the lack of information that exists around intersex issues and so, in order to help parents of intersex children, I share the following tips:
1. Do your own research
Don’t stay alone with the information and options provided by doctors. Do your own research, especially on websites and organizations run by intersex people, where you can find a lot of useful information such as guides for parents, stories or testimonies of intersex adults, recommendations of human rights organizations, in addition to a lot of other information that will allow you to have a broader perspective about intersex issues. Information is power.
2. Don’t make hasty decisions
If your child’s health is not at risk, don’t rush to make decisions about surgeries or treatments that can have irreversible and negative consequences on your child’s physical and mental health. Give yourself time to research and reflect.
3. Don’t consent to treatments or surgeries unless your child’s life or physical health is at risk
There is no need to perform surgery on a baby’s healthy body.
The “cosmetic” or “normalizing” genital surgeries that doctors commonly propose to parents, as the name implies, only have the purpose of modifying the appearance so that it fits what is considered a “typically feminine or masculine appearance”. However, these surgeries can have important consequences on the physical health of the person and may turn healthy genitalia into one full of health problems. Some of the consequences these surgeries may have are: total or partial loss of sexual sensation, incontinence, lifelong pain, recurrent infections and scars, among other things, depending on the surgical “technique” that the surgeon has used.
Unless your child has an obvious health problem – for example, a blockage in the flow of urine – there is no medical reason to intervene.
It is also common for doctors to perform surgery to remove gonads without evidence of disease, due to a supposed risk of cancer. Many times, this risk is similar, or even less, to the risk of breast cancer. By removing someone’s gonads, and thus depriving this person of their natural source of hormones, they are forced to have hormone replacement therapy for life. This may cause other risks such as osteoporosis and premature menopause, among others.
No one should have to undergo “cosmetic”, irreversible, medically unnecessary and non-consensual surgery in childhood, when the child is not able to provide their fully informed consent. Every child has the right to grow up with an intact body and to make their own decisions regarding their own body at an age when they can understand the implications that their decisions may have.
4. Always question your doctor about the medical need of the proposed treatments and surgeries
When a doctor proposes surgery or hormonal treatment for your child, always ask the following questions: Is this really necessary? What are the risks? Are there other options? What happens if I don’t do anything?
Then investigate on your own the answers to these questions, and if you think necessary, seek a second or third opinion.
Based on the answers and your own research, you can arrive at a conclusion, and, if this is that hormonal treatment or surgery are not medically necessary and can even be risky to the health of your child, then there is no reason to intervene.
5. Be honest with your child
Don’t hide information from your child; be open about their intersex variation.
It is important that you teach your child to love their own body as it is. According to their age and understanding, teach your child that there are many ways of being a woman or a man, that all bodies are different from each other and no two bodies that exist look the same. Some bodies may look a little more different than others but there are many other people like them. There is a lot of diversity in nature and that makes the world a wonderful place.
6. Look for peer support groups
It is a good option to look for peer support groups so that both you and your child are in contact with other parents and children and so you don’t feel like you are alone. In these groups, you will surely find some people with whom you can be friends, so that you and your child can learn with the support and company of other people who share the same experiences.
7. Allow your child to grow up in a family environment free from prejudice and open to diversity
It is important that your child feels that they can be who they are with their family. Make your home a safe and loving environment, that allows your child to ask questions and allows them to know they live with open-minded people who are welcoming and listen.
Remember that intersex children, like all children, may or may not identify with the gender assigned at birth and, as they grow up, can have any kind of sexual orientation. Let your child know that you love them no matter who they are and whatever they decide for their life. Let your child know that they are growing up in a home that embraces diversity.