Preparing for an appointment

Your health care provider may have diagnosed your baby's condition during your pregnancy. If so, in addition to the health care provider you've selected to care for you during your pregnancy, you'll also likely consult with a multidisciplinary team of physicians, surgeons and other specialists.

Here's some information to help you get ready for your appointment, and what to expect from your health care providers if your unborn baby has been diagnosed with bladder exstrophy.

What you can do

• Be aware of any pre-appointment instructions. At the time you make the appointment, be sure to ask if there's any special preparation needed.
• Ask a family member or friend to come with you, if possible. Sometimes it can be difficult to remember all the information provided to you during an appointment. Someone who accompanies you may remember something that you missed or forgot.
• Write down questions to ask your doctor. Preparing questions ahead of time will help you make the most of your time with your health care providers.

For bladder exstrophy, some basic questions to ask include:

• What is the extent of the defect? Can you tell how severe it is?
• Can my baby be treated during pregnancy?
• What will be done for my baby immediately after birth?
• Will the treatment cure my child?
• How many and what types of surgeries will my child need?
• What are some of the potential complications of treatment or surgery?
• Will there be any lasting effects?
• Are there any support groups that can help my child and me?
• What are the odds of this happening again in future pregnancies?
• Is there any way to keep this from happening again in the future?
• What websites do you recommend visiting?

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, such as:

• Have you ever had a child with bladder exstrophy or other birth defects?
• Has anyone in your family been born with bladder exstrophy?
• If necessary, are you able to travel to a facility that offers specialized care?