It is always a good idea, when you are getting ready for a visit with your child’s medical care providers, to make a list of what you want to be sure to cover during your visit. The list should include things you want to be sure to tell and to ask the providers. It is a good idea to keep in mind the specifics (like how your child is reacting to a medicine) as well as the general (like briefly reminding the provider about what your long-term goals are for your child). So, for example, a visit to the doctor might include all of the following:
briefly telling the doctor about the great job your child did in the school orchestra concert this month (to remind yourself and your provider that your child is much more than his DSD)
asking the doctor about whether she thinks your child’s medication is at the right dosage for your child’s age and weight
reminding the doctor that your long-term goals for your child include that he feels good about his body, that he is healthy, and that he feels loved and lovable
Keeping a journal, notebook, or file box about your child’s medical care can help you keep yourself organized. It will help you remember what you want to say and ask, when certain symptoms occurred or cleared up, and give you a place to keep your notes of visits and copies of your child’s medical records. (See Chapter 5 HELPFUL HANDOUTS for more about this idea.)
To help you think about questions to ask your child’s doctors, we provide the following list. This list of questions was originally written for parents whose newborn child had recently been diagnosed with a DSD, but even if that is not the case for you, you’ll probably find many of these questions helpful. Remember to take notes when you talk to the people helping your child, and keep your notes in a file so you can refer back to them as necessary. This will also later allow your child to have your notes on his or her medical history, something that could be very meaningful and useful to him or her later. There is a short-form version of these questions in the section called “Preparing for a Medical Appointment”.
Do you know my child’s exact diagnosis? If so, will you write it down for me and tell me where I can learn more about it? If not, can you tell me which diagnoses you’re thinking about? Be aware that sometimes it takes weeks or even months to figure out the correct diagnosis, but while this is happening, you should ask your child’s doctors to write down for you the diagnoses they are thinking about. If your doctor is truly uncertain and shares that uncertainty with you, that is okay! Uncertainty is normal and cannot be avoided in medicine. Humans are really complex, and there are a lot of kinds of DSDs to consider. Many kinds of DSDs can look similar, so it can be hard to sort out which your child has. But if your doctor is unnecessarily keeping you uncertain in order to control the situation, that is not okay. Assure your doctor you do not need to be “protected” from the facts of your child’s anatomy. Remind him or her you need to know as much as possible, because you’re the primary protector of your child.
How can I get copies of all of my child’s medical records and lab results? Having these will allow you to consult with others easily, and will also mean your child will have easy access to his own records when he grows up. This will be very helpful in the long run, and you have a legal right to copies of all your child’s medical records. If your doctor resists letting you see the chart, remind her you can care best for your child if you know exactly what is going on. Also be sure to get copies of the medical charts and lab results from the hospital where your child was born. Those may contain information that you need.
If there seem to be a lot of medical people coming to look at your child, ask: Who really needs to examine my child personally? Be aware that, especially if your child is in a teaching hospital, she is likely to be used as a teaching tool for medical students, nursing students, residents (doctors in training), etc. You may find this repeated display of your child’s genitals very disturbing, and your child will certainly find it disturbing once she is old enough to understand what is happening. We have heard from many adults with DSDs that repeated medical displays of their genitals harmed them for a very long time. You should therefore limit exams to those medical care providers who really need to examine your child for true medical reasons. If your child’s doctor is a resident (a doctor in training) you should also permit the supervising attending physician to examine your child. You should 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.
Would you please give my name and number to other parents who have been through something similar, and ask them to call me? It’s okay if their children didn’t have the exact same condition. I just want to talk with other parents who have older children or adult children with DSDs. It will help me understand that I’ll get through this okay. We have learned that 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. They will also help you work your way through the medical and school systems. Find out from your medical team’s coordinator (usually a nurse or social worker) if there is a parent-to-parent group in your area or a support group for your child’s DSD that the coordinator can help you meet up with. These groups often have someone who is good at working with parents in the first stages of discovery.
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 experienced to help me with my mixed emotions (fear, confusion, guilt, joy, curiosity, etc.)? Ideally, I would like to speak with someone who cares for adults with DSDs, so I can learn more about what happens as a child grows up with a DSD. 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 you know how to get and use the resources available to help your family.
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 in the newborn are failure of the urine to drain out of the body, or salt-losing in congenital adrenal hyperplasia.) If your newborn has just been recognized as having a DSD, 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. Make sure any procedures your doctor says are needed immediately really are needed immediately; 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 use what is known about various DSDs to help you figure out if your child is more likely to feel like a girl or boy in the long run. One of the things they should take into account is to what extent your child’s brain was exposed to androgens before birth. 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 for certain what gender a child will ultimately grow up to feel (even without a DSD). Make sure your doctors understand that, in the end, because you are going to be raising your child, your opinion about the gender assignment matters more than their opinions. Keep in mind your child doesn’t need any surgery to be labeled a boy or a girl. 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. Choosing a gender—boy or girl—for your child is like choosing a gender for any child; you use what is known to make the gender assignment. 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 have done anything wrong, and it does not mean your child is diseased or that you necessarily picked the wrong gender assignment; it just means your child is different from the statistical average, and the best thing you can do for him or her is to provide love and support for the child’s individuality.
If the doctors are offering genital surgeries designed to change the way your child’s genitals look, ask: Why do you think my child may need to have his or her genitals changed? What evidence do you have this will help my child in the long run? Sometimes surgeons will suggest surgeries not because it will make your child physically healthy, but because they’re worried about the way your child looks to others. 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 a DSD, but the evidence suggests she won’t be, especially if you’re open, honest, accepting, and supportive. Surgeries by definition change a person’s tissues, and the changes may be negative and irreversible. Surgeries may leave your child with diminished health, diminished sexual sensation, scarring, and a poor cosmetic outcome. There are parents who have raised their children as boys and girls with genital ambiguity because they decided against elective genital surgery. Their adult children have told us they are grateful for their parents’ decisions. So consider waiting and letting your child decide whether to take the risks. (You may discover she’s fine with herself the way she is, especially if you let her know you are.) Also ask your doctors to provide you with proof that the procedure they’re offering leads to the outcome you want—your child being more likely to be healthy and well in the long term. Avoid having one or two scary anecdotes stand in for real evidence.
You might want to ask as a follow-up: Can we wait until my child can make the decision about whether to have cosmetic genital surgeries? Waiting until a child can decide about optional procedures is supported by the American Academy of Pediatrics’ policy on informed consent and children’s participation in decision-making about their medical care. 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 Chapter 7 OTHER RESOURCES (WHERE TO LEARN MORE) for information about how to get it.) 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 that point. After all, as Sherri Groveman Morris (a lawyer with a DSD) points out, your child is also going to need a computer when she goes to college, but that doesn’t mean you need to buy one for her now! Letting your child decide will let her know she’s in charge of her own body.
You might want to also ask: How many of these particular surgeries have you done? How many had positive outcomes and poor outcomes—both in terms of physical well-being and psychological well-being? If the surgeon tells you “this always works,” you should worry! 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. Again, if you wait, by the time your child is ready to decide, it may no longer be experimental—by then doctors may have evidence about how likely a good outcome is. Make sure when you’re asking about outcomes to ask about whether the procedure improves the quality of life for patients, since that will be a central concern for you and your child.
If your doctor wants to give your child an optional hormone treatment, ask: Do we need to do this hormone treatment now? Can we wait until my child can decide whether this is the right choice for him or her? What are the risks and proven benefits for doing this now versus later? Many hormone treatments come with effects that are not reversible. So, if possible, think about waiting until your child can actively decide what he wants from his body and his medical care. See also the section called “Puberty” for important information on hormone treatments.
Regardless of what your doctor advises, ask: 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. Keep in mind it is also reasonable to 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 may think you are coping okay when you are really feeling like you are on the verge of collapse.
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.