Bladder exstrophy is a condition where a baby's bladder sticks out through the wall of the stomach. Nationwide Children’s Hospital offers a two-stage care approach that gives families time to bond with their child, time to adjust and time to develop a plan with our experts.
While the condition requires a lot of care, knowing what to expect at each age and stage can help families prepare for treatment as they go. That’s why it is important to connect with an experienced health care team who can help navigate the physical and psychological aspects of care.
During Pregnancy
Bladder exstrophy typically, but not always, is found during pregnancy. This can lead to a more stressful pregnancy. Talking to a care team who is experienced with this condition can help parents learn more about the condition and get an idea of what to expect before their child is born. If your child is diagnosed with bladder exstrophy during pregnancy, you can reach out to our care team for support.
At Birth
Some pediatric hospitals will perform surgery as soon as the baby is born but most will delay surgery for several months. Waiting to do the surgery is so helpful since parents can go home and bond with the newborn baby. This is the most important thing you can do as a new parent. Bladder exstrophy is a rare and complex condition, but it is not an emergency. Establishing a family bond and feeding schedule comes first. What is different about the Nationwide Children’s approach is that, if surgery is delayed, most hospitals will perform an osteotomy; our team avoids the need for pelvic bone cutting, instead focusing on soft tissue reconstruction.
Age Three Months
Your care team will arrange a date for your baby to come for the first repair procedure. This is around three months after birth. This is called the initial closure surgery. If you choose Nationwide Children’s for your child’s initial bladder closure:
Surgery lasts for a few hours and your baby will be on a regular floor after surgery; no need for intensive care. You will be able to feed your child right away. You’ll experience a novel approach that avoids osteotomies (cutting the pelvic bones to reshape and close the pelvis).
There is no need for external fixators, casts or traction, making recovery easier on your baby.
Within just a week, you’ll be home, where your child belongs.
Unlike most centers in the United States, at Nationwide Children's, we are usually able to close the bladder on older babies without performing an osteotomy.
Age 1-2 Years
The next step is called the Kelly procedure. This involves rebuilding the soft tissue of the bladder neck. It uses existing muscle and soft tissue to create the new neck of the bladder. This ring of muscle then works like a sphincter to open and close the bladder. This helps to control the flow of urine. The Kelly procedure creates the sphincter muscles, to more actively allow the bladder to grow.
Age 5 Years
Follow up around school-age years is important to see how well your child can hold their urine (continence) and if they are potty trained for school. There are other procedures that can be done to help with continence along the way.
Ongoing Follow-Up
As your child grows, ongoing care will help to make sure your child’s bladder, kidneys and genitals develop and remain functioning in a healthy way. Many people regain continence after surgery and maintain it throughout their lifetime.
Kids are not their conditions. Not everyone with the same biology has the same experience, though we recognize that there can be associated stressors, especially feeling different from their peers. We assess for psychological or social concerns. Our team can help work to address them with informed and compassionate care.
The best predictor of positive adjustment in kids is a loving and accepting family who can talk openly with them about their condition. You are the first people who will help them understand and interpret things. Your thoughts and appraisal of the situation will influence their narrative for how they talk about it with others in the future and how it fits into their lives.
Rama Jayanthi, MD, is Chief of the Department of Pediatric Urology at Nationwide Children's Hospital and a Clinical Professor of Urology in the Department of Urology at The Ohio State University College of Medicine. He is also Chief of Pediatric Urology at Dayton Children’s Hospital.
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