Patients found to have ARM will need surgery to create an anal opening in the correct place. The most common procedure used to correct imperforate anus is called a posterior sagittal anorectoplasty (PSARP). A series of surgeries may need to be for the best outcome.
In some babies, a temporary colostomy may be necessary. Our team is staffed with specialized advance practice nurses (APN) who will teach the parent how to take care of the stoma at home during this time period. Once the stoma is no longer needed, another surgery will be done to remove the stoma and reconnect the intestines. After this procedure, the stool will then flow from the mouth to the newly created anal opening.
After surgery, your child will remain in the hospital for a few days (length of stay varies on the child) to allow time to recover and heal properly. Your child will receive pain management and hydration through an I.V. (special thin, plastic tube that stays in the blood vessel). They may also have a small tube in their nose that ends in their stomach.
Once the child’s intestines resume normal function (they are able to pass gas and stool on their own), the tube will be removed from their nose and they will be allowed to eat. When they are able to tolerate their feedings by mouth, pass stool on their own, and have no fevers, the I.V. will be removed and they can go home with you.
If your child has an ostomy, one of the APNs from the wound/ostomy team will meet with you in the hospital to develop a plan for at-home care.
If your child does not have an ostomy, then you will be given a skin care regimen to assist with their diaper rash. In the first few weeks postoperatively, expect that your child will have 8-12 stools per day initially. Over time, the number of stools per day will lessen to 3-4 times per day.
Your child will still be recovering even after they’ve been taken home. You will monitor the amount of food or formula that they are taking. Keeping your child hydrated will be essential in recovery. Also, they may still need to take some medications. You will need to maintain good skin care in the diaper area or around the ostomy to prevent skin breakdown. If you child has an ostomy, you will be provided with appropriate supplies to care for this area. Once you are home, supplies will be ordered through a homecare company and delivered to your house.
Your child will have a follow-up appointment with your surgeon and APN one to two weeks after discharge. At this visit, the parent may learn how to perform dilations of the new anus. Dilations are done with a simple instrument (similar to a rectal thermometer) that will prevent the site from narrowing during the healing process. This procedure will need to be done at home two times a day by the parents.
Once your child has fully recovered from surgery, they will be followed on a routine basis by your surgeon and the APN group to ensure adequate weight gain and optimal outcome.
Most children with ARM will have good long-term outcomes. They should continue to grow and develop normally, however children with ARM may have loose stools or hard stools that are difficult to pass. A good daily bowel management plan will help your child manage these issues. The surgeon and APN group will continue to monitor their growth at their routine follow-up appointments. Our team is committed to following and monitoring these patients through childhood to provide the best care and outcome.