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How is cloacal exstrophy treated?
Cloacal exstrophy requires surgical repair. The treatment plan devised for your child will depend on the type and the extent of the abnormality.
This is a multi-step treatment involving several operations over a number of years. Advances in surgical techniques have enabled pediatric surgeons to minimize the number of stages involved. Another goal of current management is to decrease the number of stomas your child will need (discussed below), and in some instances eliminate the need for a stoma altogether.
The exact timing, nature, and outcome of these procedures will depend on your child's particular situation. Your surgeon will discuss with you the plan for your child and how successful you can expect it to be.
The first days
Within the first 24 to 48 hours after your child is born, surgery will likely be performed to repair the omphalocele, to return the protruding organs to the abdomen and close the opening in the abdominal wall.
The surgeons will also close the bladder and create a way for your child to eliminate stool. The latter is done by creating a colostomy: The large intestine is divided into two sections and the ends of intestine are brought through openings in the abdomen. The upper section allows stool to pass through the opening (called a stoma) and then into a collection bag. The lower section allows mucus that is produced by the intestine to pass into a collection bag. This allows for the normal separation of the urine and stool evacuation. Your baby's digestion will not be impaired after the colostomy.
Your child may also need to have a catheter passed intermittently in order to help eliminate urine or a surgical procedure to reroute urine flow.
Some spinal defects may also need to be repaired. These may be treated with surgery in the first months of life.
The next step would be to get your child healthy enough to go home. This will involve allowing your child to heal from the operation. It may also involve allowing your child to grow if he or she was born prematurely and making sure you are prepared to take care of your child's extra needs both physically and emotionally.
We support you
The nursing staff and other healthcare professionals that work with your baby's surgeon can help you learn to take care of the colostomy. Local and national support groups may also be of help during this time.
Depending on the amount of colon your child was born with and the nerve and muscle function in your baby's bottom, surgeons may eventually create a rectum and close the stoma. If your child has a significant amount of colon and is able to form solid stool, a surgical procedure known as a "pull through" may eventually be performed; it involves opening the abdomen to connect the colon to the rectum.
Subsequent procedures will also involve major urinary reconstructive surgery and further genital reconstruction.
What is the long-term outlook for a baby born with cloacal exstrophy?
Medical science has come a long way in helping children born with cloacal exstrophy. Years ago, unfortunately, many of these children died at birth or within the first days of life. Today, with advances in surgery, many children not only survive and thrive, but also can look forward to leading productive lives. How "normal" a life your child will have depends on the severity of the condition.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”