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There are many ways you can help children and their families get the care they need.
How are anorectal malformations treated?
The majority of babies with anorectal malformation will need to have surgery to correct the problem. The type and number of operations necessary depends on the type and extent of abnormality your baby has.
Babies who have the type of malformation that causes the anal passage to be narrow may not need an operation. A procedure known as anal dilatation may be done periodically to help stretch the anal muscles so stool can pass through it easily. However, if the anal opening is positioned wrongly, an operation may be needed to correctly relocate the anal opening.
Babies with this type of malformation will have the membrane removed during surgery. Anal dilatations may need to be done afterward to help prevent any narrowing of the anal passage that is present.
These babies may need a series of operations in order to have the malformation repaired.
Step one: Create 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.
The nursing staff and other health care 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.
Step two: Attach the rectum to the anus
The next operation attaches the rectum to the anus and is usually done within the first few months of a baby's life. The colostomy remains in place for a few months after this operation so the area can heal without being infected by stool. (Even though the rectum and anus are now connected, stool will leave the body through the colostomy until it is are closed with surgery.) A few weeks after surgery, parents may be performing anal dilatations to help the baby get ready for the next phase of treatment.
Step three: Close the colostomy
Two to three months later, an operation is done to close the colostomy. The baby is not allowed to eat anything for a few days after surgery while the intestine is healing. Several days after surgery, the baby will start passing stools through the rectum.
At first, stools will be frequent and loose. Diaper rash and skin irritation can be a problem at this time. Within a few weeks after surgery, the stools become less frequent and more solid, often causing constipation. Your baby's physician may recommend a high fiber diet (including fruits, vegetables, juices, whole-wheat grains and cereals) to help with constipation.
What's my child's long-term outlook?
Again, it depends on the type of malformation.
Toilet training should be started at the usual age, which is generally when the child is between two and three years old. However, children who have had anorectal malformations repaired may be slower than others to gain bowel control. Some children may not be able to gain good control over their bowel movements, while others may be chronically constipated, depending on the type of malformation and its repair.
Sometimes these children have difficulty controlling urine and do not properly toilet train, remain wet after training or develop repeated urinary infection. Imaging of the urinary tract with a renal ultrasound and a voiding cystourethrogram (a special bladder x-ray) may help clarify what problem is causing these difficulties.
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.”