Bladder exstrophy is a rare condition where a baby is born with their bladder on the outside of their body. While the baby is growing in the mother's womb, the skin and muscles on the lower stomach do not close completely. This leaves the bladder open to the air. The name comes from a Greek word that means "turned inside out."
Epispadias is a similar health issue that affects the tube that carries pee out of the body (the urethra). In this condition, the tube does not close properly into a straw shape. Most boys born with their bladder on the outside also have epispadias, but some children are born with just epispadias and a normal bladder.
In boys, the urethra is often short and split open. Instead of opening at the very tip of the penis, it opens on the top side. This can make the penis appear shorter and wider than usual.
In girls, the opening of the urethra is usually located higher up and is wider than normal. There may be more space between the folds of skin around the vagina, and the clitoris may be divided into two halves.
Because the bladder and pelvic area did not form normally, other parts of the body may be affected. A doctor will use X-rays and special scans to check for:
Sometimes, a doctor can see bladder exstrophy on an ultrasound scan before the baby is born. If not, it is very easy to see as soon as the baby is born. In boys, epispadias is also noticed at birth. In girls, however, epispadias might not be found until they are older and have trouble staying dry or get many bladder infections.
Doctors do not yet know the exact cause. These conditions happen very early in pregnancy (between the fourth and sixth week) when organs are just starting to grow. It is important to know that this is not caused by anything the parents did or did not do. It is also not a simple disease passed down through family genes.
This condition is very rare, occurring in about 1 in every 40,000 births. It is two to three times more common in boys than in girls. If a family already has one child with this condition, the chance of a second child having it is about 1 in 100.
A child will need several surgeries over the first few years of life. The goals of the doctor are to protect the kidneys, fix the bladder and private parts, and help the child look and function as normally as possible. Immediately after birth, the doctor will cover the open bladder with clear plastic wrap to keep it moist and safe until the first surgery.
In the first few days of life, a doctor performs a "Bladder and Abdominal Wall Repair." During this operation, the doctor puts the bladder back inside the body and closes the skin on the stomach. The child will use small tubes called catheters to drain urine while they heal. The child will stay in the hospital for a few weeks to recover and receive medicine for pain.
When a child is between one and two years old, a doctor may perform the Kelly Procedure. During this surgery, the doctor uses the child's own tissues to create a "stopper" muscle (sphincter). This helps the child hold their urine so the bladder can stretch and grow. At this time, the doctor may also fix the appearance of the penis or the belly button.
As with any surgery, there are risks of bleeding or infection. If the surgical cut on the stomach does not heal perfectly, it could open up, requiring another repair. A major goal for the doctor is to prevent urine from flowing back into the kidneys (reflux). The doctor will use tests to monitor the child's kidney health for their entire life.
The long-term outlook is generally very good. Most children grow up to lead healthy, happy lives. About 20% of children may need an extra surgery as they get older to enlarge the bladder and help them stay dry.
As adults, their private parts may look different—for example, a man's penis may be shorter—but this usually does not stop them from having relationships or starting a family. Women can also have children, though they usually need a C-section to give birth safely.
Yes. Children will need to see a specialist doctor regularly to make sure their kidneys and bladder stay healthy. These check-ups continue all the way into adulthood. Many families also find it helpful for the child to talk to a counselor or psychologist during big life changes, like starting a new school, to help them feel confident and supported.
Tender Palm Super-Speciality Hospital offers advanced Bladder Exstrophy and Epispadias Complex treatment for children in Lucknow, India, at an affordable cost. We have a team of experienced pediatric urologists and reconstructive surgeons who provide accurate diagnosis with advanced imaging, personalized medical care, and specialized surgical treatment tailored to each child's specific condition. Our Pediatric Urology team has decades of experience in successfully treating Bladder Exstrophy and Epispadias Complex in Lucknow, India.
Call us at +91-9076972161
Email at care@tenderpalm.com