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Cloacal exstrophy requires surgical repair. The treatment plan devised for your child will depend on the type and the extent of the abnormality.
Treatment involves a series of surgeries over a number of years. This plan is called staged reconstruction. Advances in surgical techniques have enabled pediatric surgeons to minimize the number of stages involved, with the goal of minimizing the number of stomas (discussed below) needed and in some instances eliminating the need for a stoma altogether. The exact timing, nature, and outcome of these surgeries 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.
Soon after your child is born, within the first 24 to 48 hours, surgery will likely be performed to repair the omphalocele. The surgeons will close the bladder and create a way for your child to eliminate waste. The latter is done by creating a colostomy. With 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 in a collection bag. The lower section allows mucus that is produced by the intestine to pass into a collection bag. By doing a colostomy, the baby's digestion will not be impaired. Your child may also need to have a special appliance that is surgically implanted to help eliminate urine. Any spinal defects may also be repaired at this time.
The next step would be to get your child healthy enough to go home. This will involve allowing the 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.
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 to you during this time.
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