When Your Baby Has an Imperforate Anus
The Moment When Everything Changes
"Your baby has a birth defect." These are words that no parent wants to hear and with an imperforate anus, most of the time the diagnosis is a total surprise since it doesn`t show up on the ultrasound. That means that moments after the birth of your little one, you`ll be told that there is something wrong with your baby and no one knows how bad it is. It`s a terrifying moment for any parent and one that I have lived through myself.
This lens is meant for those who have had a baby with imperforate anus or those who may be at risk (it can be genetic and tends to skip a generation). I`ll share our experiences with this defect (my son Dorian was born with an imperforate anus) and information to help you understand just what an imperforate anus is and what it means for your child. Most children go on to live happy, fulfilled lives, while some will suffer from various health issues, depending on the severity of the birth defect.
If you are interested in meeting more parents who are dealing with this, there are groups on Facebook. Search for "Imperforate Anus Support" and pick the one that appeals. I used to run a forum for IA parents, but it became too costly to keep up.
What Is 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. Exactly how this manifests in each child will depend entirely on the child.
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.
In some cases, the baby will have a fistula, or small opening which misleads parents and doctors by allowing a small amount of feces to come out. This fistula may not be where the anus would normally be. In girls, it may be in the vagina, in boys it may be in the urethra.
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. In some extreme cases in girls, the urethra, vagina and rectum are all one opening, called a cloaca.
The Best Advice I Ever Received
Dorian's doctor told us: "Just treat him like a normal baby. While he needs special care, the biggest need is what every child needs . . . love."
Other Possible Complications
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.
Your child will probably take a lot of antibiotics and these will usually stain his baby teeth . . . don't worry, his adult teeth should come in just fine.
Treatments for Imperforate Anus
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.
A lot of parents are visiting this page because they have a child with an imperforate anus and are dealing with life revolving around bowels. Some are just here to investigate for a friend or grandchild. What's your story?
Please note, I cannot answer any questions here and neither can anyone else.
You can contact me via my lensmaster page.
Do you have a child with an imperforate anus?
Life after your baby`s colostomy
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.
Will My Child Grow Up To Be Normal?
One of the most common questions parents have is how this birth defect will affect their child for the rest of their life. With my son, we were terrified that he would never have a normal life and we asked ourselves this question over and over. The answer?
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 plenty of protein in the form of beans and meat. While he does still deal with the occasional blockage, enemas are not needed as often because of his diet.
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.
Infant Colostomy Bags
Finding infant sized colostomy bags can be a challenge, particularly if you don't live in a first world country. With Dorian, we resorted to other methods because colostomy bags for his size were impossible to find.
Neutralize Bad Odors
One of the issues with colostomy bags is the smell. While the bag is closed, smells still tend to get out. This deodorizing lube will help make it easier to empty the colostomy bag, as well as getting rid of odors.
Adapt Lubricating Deodorant Adapt Lubricating Deodorant enables a new level of confidence and security with a proven odor-neutralizer and pouch lubricant that helps keep the pouch interior clean. Lubrication eases emptying and helps prevent pouch static and sticking. Adapt Lubricating Deodorant features deodorant that works by neutralizing the odor, not a perfume or masking agent.
You'll need a sturdy adhesive, too, that will hold the colostomy bag in place and not let it leak, which is thoroughly disgusting, trust me!
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 day.
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 (small opening), 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 occasionally gets constipated, he is a normal, healthy seven year old 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.
What You Need to Know About Adhesions
We had something very scary happen to Dorian recently. What the doctors thought was a stomach infection turned out to be a blockage in his intestines caused by adhesions. Adhesions are strands of protein that connect body parts, usually where they have been injured. In Dorian's case, the adhesions had pulled a loop of intestine into a very tight angle which blocked everything up.
We had NO IDEA that this could happen and were not prepared for the emergency surgery that followed. Everything went well and Dorian is recovering nicely, but I feel that it is important to let other parents know that there is a pretty high chance of children with abdominal surgery getting intestinal adhesions. In many cases, this doesn't affect them at all. However, in Dorian's case, and the case of his friend (bizarrely, his friend was in the hospital at the same exact time for adhesions, too), things got very serious.
I'll be doing a lens soon about adhesions after surgery, but you should keep an eye out for extreme bloating, since feces and gas tend to get stuck. The kid will complain of abdominal pain and may start to vomit. Dorian was vomiting blood, his friend didn't have any symptoms except intense pain. If you suspect your child is NOT ok, take him to the doctor. They can listen to his or her abdomen and determine if there is a blockage.
Read More About Kids with Imperforate Anus
You`re not alone! With one in 5,000 babies being born with an imperforate anus, you can connect with other parents who are dealing with the same problem or who have already been there.
Looking for more information? You will find plenty at these links.
I`d love to hear from you, so please leave a comment! Also, if you are a parent of a child with an imperforate anus, feel free to ask questions or contact me through my profile.