If your baby was born with ambiguous genitalia, you may be referred to a medical center with doctors who have expertise in this condition. Ambiguous genitalia is uncommon and complex and may require a team of experts. The team might include a pediatrician, neonatologist, pediatric urologist, pediatric general surgeon, endocrinologist, geneticist, and psychologist or social worker.
Because appointments can be brief, and because there's often a lot of ground to cover, it's a good idea to be well prepared. Here's some information to help you get ready and know what to expect from your doctor.
What you can do
- Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance, such as diet changes, to prepare your infant for tests and procedures.
- Write down key personal information, including family history of genetic diseases or conditions, such as ambiguous genitalia.
- Consider taking a family member or friend along. Sometimes it can be difficult to remember all the information provided during an appointment. Someone who accompanies you may remember something that you missed or forgot.
- Write down questions to ask your doctor.
Your time with your doctor is limited, so preparing a list of questions will help you make the most of your time together. List your questions from most important to least important in case time runs out. For ambiguous genitalia, some basic questions to ask your doctor include:
- What caused my infant's ambiguous genitalia?
- What kinds of tests does my infant need?
- What is the best course of action?
- What are the alternatives to the primary approach that you're suggesting?
- Are there any restrictions that my baby needs to follow?
- Should my infant see a specialist? What will that cost, and will my insurance cover it?
- Is there a generic alternative to the medicine you're prescribing?
- Are there brochures or other printed materials that I can take with me? What websites do you recommend?
- What will determine whether I should plan for a follow-up visit?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask other questions during your appointment.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may allow more time later to cover other points you want to address. Your doctor may ask:
Mar. 16, 2012
- Does your family have a history of ambiguous genitalia?
- Does your family have a history of other genetic diseases?
- Do any diseases or conditions tend to run in your family?
- Have you ever had a miscarriage?
- Have you ever had a child who died in infancy?
- Ambiguous genitalia. American Urological Association Foundation. http://www.urologyhealth.org/urology/index.cfm?article=90. Accessed Feb. 14, 2012.
- Tanagho EA, et al. Smith's General Urology. 17th ed. New York, N.Y.: The McGraw-Hill Companies; 2008. http://www.accessmedicine.com/resourceTOC.aspx?resourceID=21. Accessed Feb. 16, 2012.
- Murphy C, et al. Ambiguous genitalia in the newborn: An overview and teaching tool. Journal of Pediatric and Adolescent Gynecology. 2011;24:236.
- Barbaro M, et al. Disorders of sex development. Seminars in Fetal and Neonatal Medicine. 2011;16:119.
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