When Your Baby Has an Imperforate Anus

Quite simply, an imperforate anus is when there is no anal opening. In some cases, there may be a very small one, called a fistula, that isn`t big enough for the child to defecate. And in other cases, the fistula opens into the urethra or even the vagina, in girls.

Imperforate anus is more common in boys than in girls and occurs once in every 5,000 births or so. Unfortunately, this type of birth defect is often accompanied by other problems.

Your baby will probably be diagnosed immediately since one of the tests that the doctors or nurses do when checking a newborn over is slide a finger over the anus. It`s pretty obvious if there is no opening. In this case, the intestine simply ends and the meconium, or feces that the infant is born with, cannot get out. This often causes vomiting and a swollen stomach if surgery is not performed shortly after birth.

There are two main types of imperforate anus, high and low lesion. Low lesion is when the intestines end very near the anus and this is the easiest to treat. High lesion means the intestines end further up in the abdomen and may have a fistula in the vagina or urethra. In some extreme cases, the urethra, vagina and rectum are all one opening, called a cloaca.

Often, if a baby has an imperforate anus, he will also have other malformations. The most common issues include:

- Spinal problems
- Heart problems
- Tracheoesophageal fistula
- Esophageal atresia
- Kidney and bladder problems
- Possible limb malformations

Your baby will undergo several tests after birth to determine if there are any other issues that need to be treated. In many cases, minor issues will be left for the time being, such as when the bladder doesn`t work correctly, since these problems may clear up on their own as the child grows.

There are basically two options for treating an imperforate anus. If there is only a thin layer of skin over the anal opening, an "anoplasty" can be done to open it. This seems to be pretty rare from my research, however.

The most common treatment is a colostomy. This is basically when two small holes are made in the baby`s abdomen and the intestine is cut. The upper part of the intestine is connected to the upper hole, while the lower intestine is connected to the lower one. To do this, the surgeon will essentially turn the intestinal segment inside out at the end and sew it to the skin. These tubes are red and look like small donuts. They are called stoma.

It can be very scary to see your newborn with a colostomy, but it`s not the end of the world. There are a couple of things you should know. First, the stoma WILL bleed and that`s fine. It`s completely normal and nothing to worry about. Second, despite the fact that it seems unlikely, the stoma WILL fuse with the skin to form a seal . . . you don`t have to worry about the intestine coming loose once it`s healed and slipping back inside. I know these are things that worried me no end in the beginning, so I thought I`d just put that out there.

A colostomy requires use of a colostomy bag (though there are alternatives, we used a folded diaper over the stoma which needed to be changed 15-20 times a day). This bag seals around the stoma and all the feces just go into this. You can open the bottom of the bag to remove the feces and the bag needs to be changed frequently. You will need to use a special protective cream to create a barrier on the skin, as well, since the feces are constantly in contact with the skin, which can cause irritation. The glue on the actual bag can also cause irritation and in my son`s case, caused most of his skin to peel off, so care needs to be taken.

The colostomy is very, very rarely permanent. Your child will need reconstructive surgery on his or her anus and then the colostomy can be reversed.

Depending on what other issues your child has, your doctor will most likely set a tentative timeline for followup surgeries. These vary from country to country. For example, Dorian had his surgeries at 7 and 13 months, which American doctors told me was very early. How many surgeries are necessary will depend on your surgeon and the extent of the repair needed.

Anoplasty. This surgery will open the anus and basically reconstruct it. After an anoplasty, your child will require daily dilations, where dilating rods (usually glass or steel) will be inserted into the anus and moved in and out a few times. This helps prevent scar tissue buildup and keeps the anus from closing.

Colostomy reversal. This is where the colostomy will be removed. The two ends of the intestine that were outside the body will be trimmed and then sewed together. Your child will not be allowed to eat solids for a while (up to 15 days) and may require a special diet to keep the stool soft enough to pass. Most post-colostomy children need enemas on a regular basis.

One of the most common questions parents have is how this birth defect will affect their child for the rest of their life.

It depends. Each child is different and this depends on whether or not they have other problems. However, your child will grow up able to do things like other kids, even if they have difficulties in some areas.

For most children, enemas will be a continuing necessity. As they grow, they will be able to do this on their own. Laxatives may also be necessary since for many, constipation is an issue. A large number of children born with imperforate anus will eventually learn bowel control, though it may take them considerably longer than the average child.

In many cases, diet plays an important role in how well the intestines function, so you`ll probably want to experiment with this. We were giving Dorian daily enemas until we changed his diet to eliminate most wheat products, sugar and milk. He now eats very well (we all do!), mostly fruit and vegetables, and drinks soy milk. He hasn`t needed an enema in 6 months at the time of this writing. However, he is still in diapers . . . some parents prefer to use enemas to keep their child clean after they have moved on to underwear, which we haven`t had to deal with yet.

Most of the time, your kid is going to just be a kid. This problem doesn`t affect their mind or abilities at all and you`ll be hard pressed to keep up with your active toddler and his or her quick wit. Kids are a blessing and so much fun . . . no matter what they`ve gone through.

I was thrilled to be able to have my first son, Dorian, after three miscarriages and having been told that I wouldn`t be able to have children. He was our little miracle!

As soon as he was born and I`d held him for a few seconds, he was whisked away to be cleaned up and checked over. Then the nurse came back, looking very sombre. "Your baby has a problem. He has no anus." She told me. She went on to explain that Dorian needed to be kept under observation and would have to be sent to the capital to have surgery within the next 24 hours.

Since he was born in Guatemala, my husband wasn`t allowed into the delivery room and had gone home for the night. He called the hospital early in the morning to find out if I`d had the baby yet and was told that he could come in during visiting hours. He asked if we were ok and the nurse evasively said, "Your wife is fine."

"And my baby?"

"Sir, you can come see your wife during visiting hours at 9."

Needless to say, my poor husband was absolutely terrified that his son had died during the birth and paced anxiously outside the hospital until he was allowed in . . . he went straight to the nursery to see what had happened to Dorian.

The next few days were a blur. Irving (my husband), had to get an ambulance and take the baby to the capital where he was operated on just 14 hours after birth to give him a colostomy. I wasn`t allowed to leave the hospital for two days, since I had eclampsia and then we traveled daily by bus to see our little one for a few short visiting hours each day. At 8 days old, he was allowed to come home, colostomy and all!

Here in Guatemala, it`s very difficult to find colostomy bags, much less infant-sized ones. After a few attempts and some serious diaper rashes on Dorian`s belly, we finally just used cloth diapers folded and tied over the stoma and changed him frequently throughout the year.

At 7 months, he had surgery to open his anus and connect his intestines to the opening. His intestine actually did connect to the anal area and he had a fistula, but the tissue there had died off and withered up so they had to remove a piece of his intestine and then connect the living tissue to his new anus.

At 13 months, Dorian went in for his final surgery, to reverse the colostomy. He now has proper bowel movements and though he frequently gets constipated, he is a normal, very healthy little boy of three now. We control his bowel issues with diet and the occasional enema. He`s very lucky that there were no other problems, just the imperforate anus!