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 for 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

Common questions

You are not alone in having many questions. Many parents have told us what concerned them when they had an intersex child. On this page, you will find the answers to the most frequently asked questions.

You might find out when your child is born, during puberty, or during adolescence. There are different ways to find out, depending on the specific variation. Sometimes a child is visibly intersex from birth. This is not always the case, however, and your child may well be discovered to be intersex after birth or later in life through various means, including:

  • Blood tests shortly after birth
  • Routine medical examinations such as sonograms on your child’s abdomen
  • Routine operations in childhood such as hernia repair and appendectomy
  • Puberty may be different than for the child’s peers
  • Occasionally a parent will know as early as pregnancy due to pre-natal screening
  • People find out they are intersex at all ages

Variations occur everywhere in nature. Being intersex is one of them and it is nothing to be afraid of. One of the most important things is to be open with your child (in an age-appropriate manner) and to listen to what your child tells you about their needs. There will be some challenges on the way, of course. One will be that most people still don’t know a lot about the existence of intersex people, so you might need to find ways to introduce the subject and educate people on the specific needs and situation of your child. For example, to support/advise school staff in preventing your child from being teased at nursery or school.

Parents who are open about their child being intersex report that, most often, the people they tell are interested to learn more and willing to support the child. As parents, you basically set the tone for how others will treat your child. For you (and your partner), it may take some time to get used to the idea and to learn what having an intersex child means. Give yourself this time. In the process, you might be asked to make some difficult decisions, such as being asked to consent to irreversible surgeries or other medical procedures, but remember that unless your child needs urgent medical attention for its intersex variation (which is rarely the case), you should get advice from more than one source and take time before choosing any definite course of action.

Before, when, or after you register the sex of your child, you might be advised by medical professionals, family or friends to consent to medical treatment that changes your child’s body towards a more female or male appearance. These ‘normalizing’ surgeries, however, can be highly traumatic for those involved and often lead to ongoing medical problems throughout their lives. Some common arguments in support of such interventions include:

  • Not operating will increase the risk of cancer
  • It is better to operate on the child at a very early age, so that the child will not remember the interventions
  • Early intervention is less risky/more successful
  • Interventions will reduce social pressures and help the child ‘fit in’ better

Before you consent to any surgeries or medical interventions, it is important to know that no scientific evidence to support these arguments currently exists. This means that no one has carried out research to prove that such surgeries have had a positive impact on the children and young people who have undergone them compared to intersex people who did not.

Ask yourself: would you have wanted your parents to make a decision in regard to your body that is irreversible, that could have been postponed and that you might not be happy with as an adult, or would you rather they waited to seek help and allow you to grow up and take your time to understand how you feel about your body?

If your child is discovered to be intersex at birth, your post-delivery experience is likely to be different than most parents:

  • Your child may possibly be removed from you immediately or shortly after birth for varying lengths of time. Always ask where your child is being taken, why they are being removed, and when they will be returned to you. Ask to go with them if possible.
  • Instead of routine check-ups by doctors, and interactions with nurses or midwives, you will likely meet some specialists. These can include, for example, a paediatric endocrinologist, a paediatric surgeon or other specialists. You may meet them one at a time, or you may meet them as a group. There will likely also be nurses and other hospital staff present.
  • It is likely that you will either receive a lot of new information that is hard to understand or receive requests for allowing your child to undergo various tests. Much of the information you receive will be in complex medical language. If there is anything you don’t understand, ask for clearer explanations and ask if any tests are necessary before consenting.
  • The medical team at your hospital may suggest a variety of medical treatments, surgical and other means. These include gonadectomies (the removal of ovarian or testicular tissue) and various genital surgeries. Postpone all surgeries that are not life-saving and seek secondary advice.

There are many experimental treatments taking place at different hospitals. Some of these have already been found to have worrying long-term side effects on mental health and cognition. These include pre-natal drug administration as well as hormone manipulation of young children through hormone treatments administered via injections or gels.

  • If your baby has for some reason been removed from you, ask that they be returned immediately.
  • Ask for any testing to take place in your presence and ask about the reasons for the tests before giving consent. (If, for some reason, a blood test is needed, it will be much easier for your baby for this to take place with you present, ready to soothe them).
  • If possible, call a loved one or a trusted person and ask them to join you. This is a difficult time for all new parents and you will have more to keep track of than most. Having someone to help by taking notes and giving a helping hand can be very beneficial. Ask if discussions can be postponed until this person arrives.
  • Write down or record as much information as you can. Recording your conversations means you don’t have to worry so much about taking notes and most phones today come with built-in voice recorders or have applications you can download. If you are alone after the birth of your child, recordings can provide a valuable alternative to a second person when later recalling information.
  • Ask questions, ask for explanations, and ask for clarifications. Take your time. You cannot make decisions without understanding. It sometimes takes us a longer time to grasp new concepts and terminology and you have an absolute right to understand what is going on.
  • Ask about when you can go home. A home environment is a much better environment than a hospital ward for bonding with your newborn. In most cases, you should be able to go home in a similar time frame as other parents. If for some reason this is not the case, ask why. If the reason is that they are waiting for test results to come in, then ask if you can still go home and come in for a visit when the results come in. Press for an answer as to why you cannot go home.

Immediately after birth you (and your partner) are likely to be filled with conflicting emotions. Furthermore, childbirth itself causes significant changes in hormone levels, affecting how we feel. These two factors alone mean it’s not an ideal time to be making big decisions, let alone decisions that can greatly affect your child’s future. In some cases, however, doctors will offer immediate treatment or surgery. Occasionally there is a need for immediate treatment. These cases will be discussed further in the next chapter. While some medical treatments are necessary for your child to remain healthy (See chapter ‘Making decisions in relation to medical interventions’), the majority of treatments cannot be rationalized solely based on medical need but rather are based on social and cosmetic factors. These include surgeries to change the appearance of your child’s outer genitals because they do not look like most people’s genitals, or so your child can perform a gendered social function, like standing up to urinate if they have been assigned male. These also include surgeries to create vaginas in infants assigned female so that they can fulfil certain social roles. These are elective treatments and your child has a right to choose these for themselves when they are old enough to make that decision. In the meantime, seek support and reach out to intersex organizations, as they may be able to connect you with other parents that have similar experiences. Remember, your child is an autonomous being relying on you for protection, support and most of all, love. Shower your child with affection and enjoy getting to know them.

Every situation is different. You always need to put the wellbeing and the health of your child first. Also, don’t forget the wellbeing of yourself and your family. Talk with experienced people, including intersex adults, and explore options. Be critical of advice which focuses only on changing your child physically. Don’t let people push you into a quick decision. Most decisions can be postponed until your child is mature enough to be included in the decision making processes. Take time to do research, reach out to intersex advocates for support and concentrate on getting to know your beautiful new child.

Whilst having surgery or other medical procedures when your child is still a baby might be presented to you as the best option, it’s important to know what the longer-term consequences could be. First, it’s important to be aware that any surgery that requires general anesthesia is life-threatening, especially, but not limited to, surgeries that are performed on infants and young children. Second, there is the possibility that your perfectly healthy intersex child will lose the functionality of the operated body part, such as their urethra, during a non-life saving normalizing surgery. No long-term studies exist yet on the actual preservation of everyday and future erotic function of genitals that have been operated on at an early age. On the contrary, many intersex people that have been subjected to surgeries in childhood have reported numbness and pain (due to scar tissue) and a lack of or limited erotic sensation as adults. Third, medical interventions often lead to further interventions being necessary and sometimes result in a lifelong dependency on doctors. Furthermore, psychological research has shown that the pain memory is already developed in infants, and intersex people who were operated on as babies often report that they felt that something had been done to them, even though they could not remember what until much later. Finally, normalizing interventions do not change an intersex body to become a ‘male’ or ‘female’ body, they simply alter the appearance to make them look/function as such, to varying degrees of success.

Many intersex people who have not had any surgery or medical interventions have perfectly healthy bodies. According to the few studies that exist, most intersex people who have undergone normalizing surgery have a whole range of health issues related to these treatments. Unless there are serious health risks, it is highly recommended to wait until your child is old enough to be involved in the decision making process.

The fact that we live in a society that, for the most part, still does not legally acknowledge the diversity of human sexes will put you under pressure to register the child as either male or female in most countries. Different countries have different regulations regarding if and when a sex marker must be entered into official registries and this can vary from a few days to weeks or even months. You should not feel pressured to enter a marker before this period ends. In countries where only male or female options are available, intersex organisations recommend that parents assign the sex which feels most appropriate, but understand as the child grows up this may need to be changed to fit with their gender identity.

Intersex organisations recommend that you raise your child as male or female, as currently this is how our societies are structured. At the same time, you should keep in mind that your child might develop a gender that is not in accordance with the sex and gender you chose. There is nothing wrong with this – it is simply your child telling you who they are when they are old enough to express their individual personality.

Being intersex is a form of body diversity. Being intersex is neither a disability nor a long-term physical impairment. Intersex people who have been subjected to surgery and other medical interventions, however, often do have health issues because of these interventions that qualify as disabilities.

Yes, intersex individuals who are now adults and were raised in shame and secrecy have spoken very clearly about how these experiences negatively impacted their personal life, their family life, and their relationships with their parent(s) or carer(s). On the other hand, families who have established a culture of speaking openly with their children about their bodily diversity report the positive impact this openness has had on their family life and the self-confidence of their child and adolescent. You can choose age-appropriate explanations. The most important thing is to let your child know that you love them exactly the way they are.

The decision to tell others is a personal choice, but you should also think about how it could affect your child later in life. Keeping it a secret from everyone and not talking about it at all, however, is unlikely to be good for you or your child. Like any other personal information, think about who you trust and who it might be beneficial to tell. In fact, when it comes to your child going to nursery, kindergarten or school, you will need to disclose this information up to a certain degree to make sure that your child can be open about being intersex with others. This can be challenging, so we encourage you to seek support to take care of your own wellbeing. Many parents that have chosen to disclose this information, however, have reported a significant positive impact, which helped them to raise their child in a safe and empowering environment. Remember, you don’t have to answer all the questions, especially those which are too private.

ADVICE FOR PARENTS
MEDICAL INTERVENTIONS
ADVICE FOR PARENTS
MEDICAL INTERVENTIONS

References

Een baby en een kleuter zitten op de grond samen te spelen. Lijntekening gemaakt in een enkele pennenstreek.