Tips for Parents
Submitted by ISNA on Tue, 09/07/2004 - 15:05.
The Intersex Society of North America (ISNA) is the premier resource for people seeking information and advice about atypical reproductive anatomies and disorders of sex development (DSDs). Since our founding in 1993, we have been offering policy advice, positive advocacy, and caring support for individuals and families dealing with DSDs. You can also obtain our more extensive Handbook for Parents by visiting www.dsdguidelines.org.
The following are questions we suggest you ask your child’s medical care providers. We also suggest you take and keep careful notes so that you keep track of your child’s medical history and all your options
Questions for your medical care provider
- Do you know my child’s exact diagnosis? Ask the doctor to write down the condition’s name and where you can learn more. Keep in mind, many DSDs can look similar, so sometimes it takes weeks or even months to figure out the correct diagnosis. In this case, ask your child’s doctors to write down for you the diagnoses they are considering. You need to know as much as possible because you are your child’s primary caregiver.
- How can I get complete copies of my child’s medical chart and lab results? Also be sure to get copies of the medical charts and lab results from the hospital where your child was born. Being persistent about receiving copies at the time of care will save you hours of frustration later. Having copies of the records will allow you to consult others easily and make it possible for you to give your child a written record of your child’s medical care when your child matures. You have a legal right to copies of all your minor child’s medical records.
- If a lot of medical people are coming to look at your child, ask: “Who really needs to examine my child personally?” If your child is in a teaching hospital, your child will likely be used as a teaching tool for medical students, nursing students, residents (doctors in training), etc. We have heard from many adults with DSDs that repeated medical displays of their genitals seriously harmed them (and sometimes their parents). You should therefore limit exams to those truly necessary for your child’s care. If your child’s doctor is a resident (a doctor in training) you should also permit the supervising attending physician to examine your child. Remain with your child during examinations to comfort and advocate. Resist having the medical team take pictures of your child’s genitals; parents of children with DSDs who are also medical professionals tell us those pictures are almost never necessary for a child’s medical care.
- Does this hospital’s team have a parent liaison or a working relationship with support groups for families with DSDs? How can I contact them? If your child’s doctor isn’t sure, ask your medical team’s social worker, psychologist, or nurse. Peer support is probably the MOST important thing for parents. Meeting another parent who has lived for years with a child with a DSD will help you realize you are not alone, and that your roller-coaster of emotions and experiences is normal. Peers will also help you work your way through the medical and school systems and will explain jargon and resources.
- Would you please give me a referral to a psychologist, psychiatrist, and/or social worker who has experience dealing with gender issues and birth anomalies, so I can get someone to help me with my mixed emotions (fear, confusion, guilt, joy, curiosity, etc.)? Note that caring medical doctors—including endocrinologists, urologists, and surgeons—may try to provide counseling to you and your child, but most have neither the time nor training to do it well. Push for professional psychological support for yourself and your child. Getting that does not mean you’re crazy or weird; it means you have found yourself in an unusual situation and know enough to get expert help.
- Is my child having any immediate medical problems? If so, what are they, and what are the treatment options? What is the danger of doing nothing right now? Most children born with DSDs are healthy; they have no immediate medical problems. Most can be taken home safely and joyfully as soon as test results show there are no immediate medical problems. (Examples of immediate medical concerns are failure of urine to drain and salt-losing in congenital adrenal hyperplasia.) Let your care providers know you want to take your child home as soon as possible, so you can get on with the business of getting to know your precious new family member. Sometimes well-meaning doctors feel that they have to offer you a procedure now, even when it can really wait. Ask your doctor or nurse if there are home-based resources available to you that might speed up getting discharged and back home. If your child requires some monitoring, sometimes this can be done at home with the help of a specially trained home-visit nurse.
- Which gender assignment (boy or girl) do you think my child should be given? Which gender do you think my child is most likely to feel as my child grows up? What are your reasons? Doctors can help you figure out if your child is likely to feel like a girl or boy in the long run. Evidence suggests that children exposed to high levels of androgens before birth are more likely to grow up to feel masculine. But no one can predict with certainty what gender a child will ultimately grow up to feel. Your opinion about your child’s gender assignment matters a lot because you are the one who will raise the child. Keep in mind your child doesn’t need any surgery to be labeled a boy or a girl. We know of many men and women who were raised with bodies labeled “ambiguous” who did well. (Do not let anyone tell you that delaying this kind of surgery is equal to “raising your child in a third gender.” It is not.) Children with DSDs do not change their original gender assignments very often. If your child grows to act gender “atypical,” that is not because you or your child have done anything wrong; it just means your child is different from the statistical average, and the best thing you can do is to provide love and support for your child’s individuality.
- Here’s a useful general question: Can we wait until my child can make the decisions about optional medicines (like hormones) and procedures (like surgeries)? Waiting until a child can decide about optional medicines and procedures is supported by the American Academy of Pediatrics. The AAP also says that you and your child have the right to know everything you can about the procedure being offered. We recommend you download a copy of the AAP policy and go over it with your child’s doctors (see www.cirp.org/library/ethics/AAP). If the doctor says “your child will need this surgery when he or she becomes sexually active,” ask why the surgeries can’t wait until then. As Sherri Groveman (a lawyer with a DSD) points out, your child is also going to need a computer when the time comes for college, but that doesn’t mean you need to buy one now! Letting your child decide will let your child know he or she in charge of his or her own body.
- If the doctors are offering genital surgeries to change the way your child’s genitals look, ask: Why do you think my child needs this genital surgery? What evidence do you have that this will help my child in the long run? If your child needs a surgery to save her life, obviously it is a good idea! If your surgeon wants to do a surgery to change how your child looks, pause and consider waiting. What we know about people who grew up with “ambiguous genitalia” tells us on average they do well! You may understandably worry that your child will be emotionally hurt by having something other than average-looking genitals, but the evidence suggests your child won’t be, especially if you’re open, honest, accepting, and supportive. Surgeries may leave your child with diminished health, diminished sexual sensation, scarring, a poor cosmetic outcome, and an unintended message that your child needed to be “fixed” to be accepted by you. So consider waiting and letting your child decide whether to take the risks. You may discover your child is fine with the way your child is, especially if you let your child know you are.
- You might want to ask the surgeon: How many of these particular surgeries have you done? What have been all the outcomes, both in terms of physical well-being and psychological well-being? No surgery works every time; find someone who is honest and realistic. If you decide to go with a procedure, choose the one that has been shown to be of proven benefit for people with your child’s condition. If there’s no evidence about what works, think about waiting until your child can decide whether to risk an experimental procedure. Make sure to ask what improves the quality of life for patients, since that will be a central concern for you and your child.
- If surgeons are offering removal of your child’s gonads (testes, ovaries, etc.), ask: Is this medically necessary right now? If your child is facing a significant immediate threat of gonadal cancer, then there’s good reason to take the gonads out. But sometimes surgeons remove gonads from infants with DSDs even though they pose no significant immediate medical danger because they think this will spare the child from being aware of the gonad removal later. Yet adults who have been through this tell us they were not ultimately spared the psychological trauma of gonadectomy—they just had the choice taken away from them. There are often good reasons to leave healthy gonads in, including the significant benefits of natural hormones and increasing your child’s chances of becoming a biological parent. (Reproductive technologies are increasingly allowing previously-infertile people to be biological parents.)
- If the doctors are offering hormone treatments, ask: Is this medically necessary right now? What is the evidence, and what is the danger of doing nothing right now? Some hormone treatments are necessary to keeping children physically healthy and to preserving their fertility. But some are optional you can wait for your child to decide what’s right for him or her. Many hormone treatments come with effects that are not reversible.
- Can you introduce me to someone with a similar condition who has been treated the way you recommend, and someone with a similar condition who was treated with an alternative? This won’t give you a scientific sample, but it will let you meet some adults with DSDs who can help you think about what your child might want from you in the long run. They may also know of good people for you to talk to and may have some important information about your options.
- If you are feeling overwhelmed and stressed, ask: Can you help me get professional mental health support? I’m feeling overwhelmed and I think I need help. You can also ask your own personal doctor (your family practice doctor, your intern, your gynecologist, etc.) for this kind of referral. Make sure you tell him or her how you are feeling. Sometimes people will think you are coping okay when you are really feeling overwhelmed.
- Finally, if you are feeling like you are emotionally strong and have become well educated about your child’s DSD, ask the doctor: Would you please give my name to other parents in your practice who might need someone to talk to? It doesn’t matter if their children have exactly what mine does, I just want to be supportive of parents in similar situations. Also consider letting your doctor know about good resources you have found that might help other families.
We’ve also prepared some additional information for adoptive parents of children with disorders of sex development.
Please feel free to write to us with suggested revisions, additions, etc. If you’d like to help us push for improved social and medical care for families like yours, please consider making a donation to ISNA.
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