Kidney, Reproductive and Urinary Conditions

Bladder Exstrophy Treatment

Bladder Exstrophy Treatment Options

Each child with bladder exstrophy is different. Your child’s care and treatment will depend on their needs. You and your child’s urologist will develop a plan of care just for your child.

Latex precautions

All babies with exstrophy are put on latex precautions. This means we avoid using products made with latex when your baby is in the hospital. You should also avoid using latex at home, especially in products that touch your baby’s mouth, nose, urethra or other mucous membrane

Products that might contain latex include some pacifiers and nipples for baby bottles.

Contact between mucous membranes and latex raises the risk of forming a latex allergy later in life. Babies with exstrophy are at greater risk for contact because they are born with some mucous membranes (their bladder and sometimes their intestines) outside, instead of inside, their body. Avoiding latex may prevent your child from forming a latex allergy.

Surgery

After doctors make the diagnosis, your child may have surgery to:

  • Bring the pubic bones together in front.
  • Place the bladder into the pelvic cavity.
  • Create a door at the lower part of the bladder (bladder neck).
  • Fix the tube that carries urine from the bladder to the outside of the body if it is short and split (epispadias).
  • Close the wall of the belly (abdominal wall).
  • Create an opening from the intestines to outside the stomach so poop (stool) can come out (surgery called a colostomy).

For newborns, we do all these steps in a single surgery (complete primary repair), often within a week after birth. An orthopedic surgeon closes the pubic bones, and a urologist completes the other steps. Doing everything at once is more complex than surgery in stages over several years. But one-stage repair means your child will have better outcomes. The bladder is more likely to grow to normal or nearly normal size, giving your child more control over urine flow. 

Our surgeons also have experience treating children who are diagnosed later in life and children who had the repair done at another hospital and need more surgery or other treatment. We work one on one with your family to assess your child’s needs and plan the steps and timing of their care. 

Care right after surgery

Your baby will probably be in the hospital for 1 to 3 weeks and will have:

  • A spica cast. Orthopedic surgeons will put on this special cast. It holds your baby’s pelvis in place until the bone sets. The cast goes from the ankles to the mid-chest, with a hole for the diaper area. This cast will stay on for 4 to 6 weeks or until your baby outgrows it. Your child’s nurses will teach you how to take care of the cast and give you special tips for diapering. Occupational therapists will help you pick the right type of car seat to use while your baby is in the cast. You can get special car seats on loan for spica casts.
  • Catheters. Catheters are tubes that drain urine from your baby. Your baby will have a catheter called a supra pubic (S-P) tube in the stomach that will drain urine from the bladder into a bag. This keeps the bladder empty so it can heal. Your baby will have the S-P tube for 3 to 4 weeks at home. Your baby may also have two ureteral catheters in place that come out through the urethra. These will fall out on their own in the hospital or the first week after your child leaves. Your child’s nurses will teach you how to take care of the catheters.
  • Intravenous line (IV). Your baby will have a tube inserted into a vein to give fluids and antibiotics for several days.
  • Cardiac respiratory monitor. Your baby’s heart rate, breathing and oxygen levels may be measured for several days.
  • Antibiotics. Your child will be on a daily, low dose of antibiotics to help prevent urinary tract infections (UTIs).

Going home

Your child’s nurse will teach you how to care for your baby at home. Also, the Urology Clinic can answer your questions at any time. Your child will have weekly appointments in the Urology Clinic for the first month after discharge and then visits every 2 to 3 months. Your baby will have X-rays or ultrasounds during many of the visits. You will also need to see your child’s regular doctor (pediatrician) on a regular basis for well-child checkups. 

Childhood after surgery

Some children who had surgery for exstrophy gain complete control over urine flow, and they have no other issues later that need treatment.  

Some children will need other procedures. These may include:

  • Children with urine that flows back up from the bladder to the kidneys (vesicoureteral reflux) take antibiotics, often for a year or more. This helps prevent UTIs. As they get older, they may need a shot (deflux injection) or surgery to reduce reflux.
  • If leaking of urine (incontinence) is a problem, your child may need surgery to tighten the door of the bladder (bladder neck). 
  • Some children need surgery to enlarge their bladder (bladder augmentation) or to place a tube (Mitrofanoff channel) so they can empty their bladder by putting a catheter through an opening in their stomach. 
  • Boys may need surgery on the penis if the opening is on the underside, not at the tip (hypospadias). Also, some boys or parents may want surgery to make the penis look more typical. (In boys with exstrophy, the penis is often a bit shorter than typical, but it works normally and has normal feeling.) 

Surgeries can often be combined to reduce the number of operations on your child. 

Your child may get more UTIs than other children. Your child’s regular doctor (pediatrician) can help monitor and treat these. 

Your school-age child should see their urologist at least once a year. This doctor will check that their kidneys are growing well and will look for any signs of kidney problems, like swelling due to blockage or backup of urine (hydronephrosis). If your child is having urinary problems, they will need to see the urologist more often. 

Adult care

Urologists at Seattle Children’s partner with urologists at University of Washington and Harborview Medical Center to ensure our patients get proper care when they become adults. Life-long follow-up care is important for good urinary health.

As an adult, your child should have normal sexual feeling and function and potential for having a baby (fertility).