Titel-illustratie bestaande uit een lijntekening en tekst. De lijntekening stelt een kind voor dat naar een teddybeer kijkt. De tekst luidt steun je intersekse kind, een gids voor ouders. Onderaan de illustratie zijn de logos van de vier betrokken organisaties weergegeven: IGLYO, OII Europe, EPA, en NNID.

Image: iStockPhoto SurfUpVector

A guide for parents of intersex children. Compiled by IGLYO, OII Europe and EPA.

Contents
Introduction
Advice for parents
Frequently asked questions
Medical interventions
Talking to your child about being intersex
Talking to others about your child being intersex
Talking to professionals about your child being intersex
About this publication

Making decisions in relation to medical interventions

The first question you should ask yourself is: Why do I think that my child needs medical interventions? Is it because my child is suffering from a physical condition that is actually threatening their life? Below are some examples of conditions where immediate treatment or surgery may be necessary, followed by conditions where immediate intervention is not proven to be necessary.

Don’t worry too much

With the vast majority of variations of sex diversity, your child is fine just the way they are. Medical interventions are not necessary at all and no doctor will even bring it up. The most important advice is therefore: enjoy your child!

Still, a lot of children are having surgery.1Research in Germany shows that in 2016, of the 1,562,736 hospitalizations of children under 10 years of age, 9834 children (0.63%) were admitted because of the principal diagnosis ‘Varianten der Geschlechtsentwicklung’ (variation in sex development)’. Of the boys, 22% underwent masculinizing treatment of the genitals, which, given the so-called OPS code, could have been postponed until the child could have decided for himself. Among the girls, this percentage was as high as 28%.“Häufigkeit normangleichender Operationen‚ uneindeutiger‘ Genitalien im Kindesalter” is the title of the study. The study was commissioned by the Ruhr-Universität Bochum and funded by the Federal Ministry for Family Affairs, Seniors, Women and Youth (BMFSFJ). Link to the study in German: https://omp.ub.rub.de/index.php/RUB/catalog/book/113.Sometimes this is a matter of life and death. We discuss the most important surgeries that definitely cannot be postponed under the heading ‘Immediate intervention is necessary’. But there are also medical treatments that can be postponed until a child can decide for himself. These are discussed under the heading ‘Immediate intervention is probably not necessary’. Of course, it is impossible to be complete, and there is an area where necessity does not seem immediately obvious. In that case, the chart to the right may help. Since the right to bodily integrity is fundamental, the medical treatment that least violates this right should be chosen. If treatment is still necessary, the violation of the right to self-determination can be limited by selecting a fully reversible treatment.

No medical advice

The information on this page

  • Helps you better communicate with health professionals,
  • is not intended to replace services or information provided by health professionals,
  • is not a substitute for medical or other professional assistance, care, support or information
  • is not intended to assist in making a (self) diagnosis,
  • contains general information that is not directed at a specific person or medical situation.

Only an expert physician can diagnose and suggest appropriate treatment.

When immediate intervention may be necessary

Salt-wasting

Salt-wasting can occur with an intersex variation that is called Congenital Adrenal Hyperplasia (CAH) by medical professionals. Both children who are assigned female and male can suffer from salt-wasting. Immediate medical intervention is needed to replace the lack of minerals in the child’s body, but afterwards they will usually be out of danger within 24 hours. Monitoring and medication to prevent future incidents may also be necessary.

Closed urethra

If your child is born with a closed urethra, urine cannot leave the body. In such cases, immediate surgery might be needed to prevent your child’s body from poisoning.

If a doctor tells you that surgery or another medical procedure is necessary, ask for:

  • A detailed explanation of what to do and why.
  • An overview of the risks of both medical intervention and inaction.
  • Where to find more information.

(More comprehensive cheat sheets for conversations with doctors and medical personnel are in the chapter Talking to teachers, doctors and other professionals about your child.)

Man tilt meisje met staartjes in het haar boven zijn hoofd, Het meisje doet alsof ze vliegt.. Lijntekening gemaakt in een enkele pennenstreek.

When immediate intervention is unlikely to be necessary

The makers of this website don’t want to have to give medical advice, but unfortunately there is plenty of evidence that healthcare professionals offer or even strongly suggest medical treatments that are unnecessary to parents of intersex children. For some of these treatments, there has never even been any research into their effectiveness. But a treatment that may be unnecessary for one type of intersex variation, may be necessary for other types. This makes it difficult to give more general advice.

Removal of gonadal tissue

Sometimes doctors tell parents that gonadal tissue (the tissue of which the testis and ovaries are made) should be removed to prevent potential cancer. However, the percentage of intersex people who have developed gonadal cancer has never been properly verified, as gonadal surgery for intersex people has been the standard for decades. In other words, there are not enough intersex people who have not had gonadal surgery to prove such a risk. To make a comparison, the risk of developing breast cancer does not mean that doctors recommend all women undergo mastectomies as the standard, but rather they suggest routine screenings to monitor for any signs of cancer. Removing your child’s ovarian or testicular tissue will also remove their ability to go through natural puberty. Furthermore, if a child’s gonads are removed, they will have to undergo hormone replacement therapy to induce puberty. This means regular visits to a doctor all through your child’s adolescence. For various reasons, some young people do not adhere to their hormone treatments, which can cause further complications. Hormones are vital to bone health and not taking hormones after a gonadectomy leads to a high risk of developing osteopenia or osteoporosis – conditions where a person’s bones become brittle. Many intersex adults, including some adolescents, report cases of osteopenia and osteoporosis.

Genital surgeries

We all have certain expectations of what female or male genitals look like, but we rarely have opportunities to see the wide range of variations that exists. In most societies, we are taught that genitals should be hidden, so our impressions are limited to what we seen in biology textbooks or other types of media. The genitals of intersex babies and children are operated on and cosmetically altered in a high number of cases. Reasons given for such surgeries include the desire to enable the future adult to:

  • Fit in better with society and grow up as male or female
  • Have a healthy sexual life by having genitals that function more in line with societal expectations
  • Reproduce and have a family

Some intersex people are subjected to surgical and other medical interventions that aim to guarantee them the possibility of becoming pregnant or to procreate. Many who were subjected to these measures as children grow up to report that, mentally and physically, they felt like like body was violated, even up to the degree of being comparable with sexual abuse. They also report that this treatment destroyed any wish to have sexual relations in adulthood. Some medical practitioners have raised their voice against early intervention from a purely medical perspective, arguing that the physical results will be much better when the body has matured more and when the patient is pursuing the treatment of their own will.

When your child or you decide that medical intervention is necessary: 

  • Ask the doctor to explain what will happen in detail
  • Ask the doctor to tell you if further interventions will be needed and what the risks are
  • Ask the doctor what psychological or other support is available for your child (and you) if necessary
  • Seek advice, information and support from an intersex organization

(More extensive cheat sheets for conversations with physicians and medical staff can be found in chapter ‘Talking to teachers, doctors and other professionals about your child being intersex’)

Op de buik liggende baby. De baby heft het hoofd op en lijkt de lezer aan te kijken. Lijntekening gemaakt in een enkele pennenstreek.

Conclusions

In a very small number of cases, surgery may be essential and non-deferrable, but many non-essential surgeries may be presented to you as necessary. Make sure you have as much information as possible and take some time to reach a decision before agreeing to any medical procedure. Most intersex activists and organizations strongly recommend that no non-essential or normalizing surgeries or interventions are carried out before the individual is old enough to make an informed decision themselves. Once your child is old enough, they may decide to go ahead with some medical procedures, but this is very different to learning that interventions were carried out on you as a baby or young child without your consent.

After an appointment with a doctor who recommends medical interventions:

  • Reach out to an intersex organization or a parent’s group for advice, information and support
  • Get help finding a doctor who can give a second opinion
  • Do your own research, review your notes, and make sure you fully understand everything that was said during the appointment

(More extensive cheat sheets for conversations with doctors or medical staff can be found in the chapter ‘Talking to teachers, doctors and other professionals about your child being intersex‘.)

FAQ
TALKING TO YOUR CHILD
FAQ
TALKING TO YOUR CHILD

References

Twee wandelende kinderen, elkaar omarmend, op de rug gezien, waarschijnlijk basisschool-leeftijd, wandelen met rugzak. Lijntekening gemaakt in een enkele pennenstreek.