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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/
When immediate intervention may be necessary
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.
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.
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.
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.
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.