For parents who have recently received the prenatal diagnosis of bladder exstrophy, we understand how overwhelming the news can be, and we are here to support and guide you through this difficult time. The first step for parents who are expecting should be to inform themselves about what bladder exstrophy is and gather resources to help prepare for when their child is born.
It is important to be prepared throughout this process, and a great way to start is by making a list of all the questions you want to ask your physician regarding your child’s diagnosis. Some examples of questions to ask your physician could be:
- What is the severity of my child’s defect?
- Is there a way my child can be treated during pregnancy?
- What measures need to be taken to ensure a smooth delivery, and what will happen immediately after delivery?
- What types of surgeries will my child need? And how many?
- What are the possible complications that may arise during surgery/treatment?
- What are the long-term effects of this birth defect?
- What support groups are available? And what additional resources should I be aware of?
(Some questions may be answered by your own research, but it is still important to hear this directly from your physician and ensure both of you are on the same page while forming a plan together.)
In addition to having a list of questions for your physician, it is helpful to pay close attention to any instructions given to you prior to your appointment with your physician as well as during the visit. A great asset is asking a friend or family member to accompany you on your visit not only for emotional support but also to help you remember everything the physician tells you. They can also be beneficial when it comes to preparing and answering questions from your physician.
As your delivery day nears, it’s crucial to have a set plan for travel/travel arrangements on or before the due date, especially if a specialized care facility is required. We understand that all this may be daunting, but we hope this app will help you find the information you need, as well as ease some anxiety you may have about what life holds for your little one as they develop.