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When Your Baby Has an Imperforate Anus

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.

imperforate-anus

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.

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

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- 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.

imperforate-anus

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.

Your Turn

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?

What`s Next?

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.

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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.

Ostomy Adhesive

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!

imperforate-anus

Dorian`s Story

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.

Dorian today

Dorian today

Dorian today

Adhesions in Children

Adhesions in Children

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.

  • Praying for Parker
    Little Parker is a cutie who has Down`s Syndrome and who was born with an imperforate anus.
  • Finding Wonder in the Mundane
    This mom blog is a neat one about a mother and her two children, the oldest of whom has just gone through surgery to reverse her colostomy.

Helpful Resources

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.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Have Something to Say?

Mekielle Bouligny on February 19, 2019:

Hello,

My son was born with both an imperforated anus and a tethered spinal cord .My son is now a healthy thriving 10 year old who plays travel basketball and football. I have been through every laxative possible and now we regulate his bowel movements with a high fiber diet, Miralax and the occasional enema.

carolyne odera on December 10, 2018:

my brother's baby has the same problem please help me with the necessary information needed to help mynephew

MaryAnn Marquez on August 20, 2018:

Hi there i am so happy to have found your page. My son was born with an impeforate anus. I was 17 years old and when they told me something was wrong I was anle to hold him for 15 minutes before they took him to a hospital across town. I cried all night and called his father all night begging him to come back to the hospital. He was born in 1987 so back then I was forced to stay in the hospital for 3 days while my son had surgery. He was in the hospital for one month and they had to redo the first surgery because the stoma was too close to the opening of the bowels and was told that the stoma would have a higher chance of getting infected. Well during his 1st year of life my son went through 7 surgeries and 5 of them were major. I was told that he had one small kidney and that he would be fine with one. He would have a full life, now he is 31 years old and is having kidney failure. He had 2 small kidneys not one. I wanted to see if anyone else has a similar experience and what do I need to do to help him? He is awaiting surgery to have a shunt placed in his abdomen so he can do dialysis at home (a blessing because he is a hard worker). I just want to know what to expect because he will need a transplant. Also I was very blessed to have they pediatric colostomy bags for him but i stopped using the glue because it ate up his skin. The square thing that you connect the bag to on one side and the other is placed on the skin has some great qualities that help the skin to heal. Thank you for any help anyone can give me would be appreciated.

Karla Poitier/ Jackson on August 06, 2018:

Hi my name is Karla my son name is Kemone he was born with imperfect anus and he is 10 year old now and he still have problems he does not have the sensation down there yet he cannot feel when he goes

Jammy on July 25, 2018:

I need some suggestion..my baby is 3year old,he is now not having proper bowel movement and need of laxative dependent...i need tips how to develop him properly like other children..pls help me

Yvette Buttle on June 28, 2018:

Hi there I was wondering have you had a baby after your son if so was it born healthy and well with no problems just my son was born with a high Imperforate Anus when he was born and I just found out in pregnant and wondered the chances of having the same.

Liam on June 05, 2018:

Hello all! I'm 30 years old and live in the UK.

I was born with an imperforate anus and live a relatively normal life.

I had a procedure a few year ago now to which I have a small opening in my belly button where I do irregations.

If anyone wants to talk about anything or need advice feel free to get in touch. I can give you my Email ect

Bea Bajo on May 23, 2018:

I am currently helping a nephew in the Philippines who has a son who was born without an opening. They had done a colostomy when he was born and is now 5 years old. I wanted to have this fixed as we all wanted him to go to school. Is there any hospital in the Philippines who does this at a discounted rate . I would definitely appreciate. My nephew is a single parent who is looking after 4 children. He recently lost his wife in November due to cancer . Any help would be appreciated. They are in Zambales.

Moses Machal Athian on May 17, 2018:

I'm Moses Machal Athian from south sudan, I have little daughter born with Imperforate anus and stool pass through vegina, please is there help for her to get operation.

mary on May 09, 2018:

Hi. My son was born with ARM it was quite a shock but we have learned to live with his condition. He will be turning 2 years my worry is he developed a prolapse and am worried

Madi on April 12, 2018:

My son was born with the intermediate/high IA, he got all his surgeries in the first year. Now he is 7 and doing very well. We are managing his bowels by watching what he eats. He has control most of the time unless he has diahrrea. Other than that he knows when to go. Just seems to go to every bathroom he sees. So diet has played a huge role in his control. Thanks and best of luck!

vedu123 on April 03, 2018:

helo friends , my son has born with same problem high imperforate anus and now he is 4yrs old but his bowel movements is not good. he is continuously passing stool with small part. doctors suggested to give anema on daily basis but i m affraid. I dont want to make habbit of enemas . so pls sugges me proper diet or exercise for him which help him to control his bowel movement.

Thanks

Small on March 28, 2018:

I'm 17 and I was born with this condition. It took me about 12 years to learn how to control and to these days I have to be very careful with what I eat, also I always have a sanitary pad with me (yes, most girls use it for blood but I found out it can be useful when it comes to my condition). Bottom line is, we eventually learn how to control it no matter how much it sucks, and waking up one day to realize we've been controlling it for months or years is wonderful.

Sandy on March 26, 2018:

Thanks for sharing with us your experience. Recently gave birth to my first miracle baby. He also has an imperforated Anus.It was my first time to hear about such a condition. But what makes me cry everyday is how he screams when I have to remove the colostomy bag. His skin is now inflamed where there is an adhesive, how I wish there was another option.

athomemom on February 20, 2018:

Yolanda, the photos are my own, apart from the diagram showing the imperforate anus. These are all of my son, Dorian.

Yolanda on February 19, 2018:

The pictures that you have on your profile and mainly the first, are they copywrited and or how did you obtain those pics. Learning pro

Genesis Davies (author) from Guatemala on July 18, 2014:

@mrsabrego2013: First, I would see if you can find a doctor who is more involved and has some experience with IA. Second, how is your son's weight and growth? If he is growing normally, he might not need more nutrition. I've known several babies who hit a year before they really get interested in food. Also, he might just not want baby food. You could offer him tastes of your own food to see if he is more interested in that. Obviously, I'm not a doctor, so take these suggestions at your own risk. ;)

mrsabrego2013 on July 18, 2014:

Hi, thank you for the site. I have followed along since my sons birth. He was born with high IA and had a colostomy and reversal in the first few months of his life. He is a happy baby and developing normally. He is 10 months now and is not eating baby food and less bottles than would be normal at his age. His therapists think he is declining quickly in his eating and I'm not sure what to do? Hes been getting physical and occupational therapy since birth but now that he is getting older it is getting more apparent that he is not eating normally. Other than that he is on track. We are working on getting some tests ordered but our doctor is not very familiar with IA so she is not proactive.

Genesis Davies (author) from Guatemala on July 15, 2014:

@jonjiriskbreaker: She should be fine waiting a little longer, though you will want to talk to her doctor. The main issue is potty training, which she will adapt to better if she is already over the surgeries.

On the financial side of things, I don't know what you do, but is it a possibility to work from home? Many jobs are adaptable.

jonjiriskbreaker on June 29, 2014:

hi, my daughter is 8mos old now and her physical development is slow and still has suspected down syndrome,we are afraid for her to undergo the operations although the doctors has cleared her for it and said she is ready ,we are not confident.is it okay if we hold it until she can walk?will it affect her stoma not behaving normally on and after the operations?it is hard to have anyone to look after her when we are at work so we take turns and when i'm away for a long time it's hard for her to adjust to me being there all of a sudden but i have to keep my job to afford all the expenses with it.can you help us have something that would help financially with out gooing away for a long time?

Genesis Davies (author) from Guatemala on February 21, 2014:

@cheer09: Cheer, I don't have any experience with high IA, so I would suggest joining this group: https://www.facebook.com/groups/99804044741/ and asking for experiences there.

That being said, I know people who have NO sphincter and basically only a hole with no muscles, who are living very fulfilling lives as adults. There are far more advanced techniques these days, so your son will have some major benefits. The two surgeries being done together is actually the best way to go, as it can eliminate the scar tissue from the colostomy which is what Dorian is dealing with now.

It's scary when your child is a baby and you don't know how it will all work out. It's not easy, and there will be times when your little one will ask why he was born this way, but there is no reason your child can't lead a very normal life. Hang in there!

cheer09 on February 20, 2014:

Can any one say how time it may take to have motion control for child born with high IA???

My child born with IA , Anus dimple was well developed and invertogram shows intermediate IA.. Colostomy was done on the next day of his birth ... now 4 months completed for him .. gone for Distalogram in this X-ray its showing like high IA but the doctor said as the anus dimple is formed well so there may changes of getting bowel movements... but iam still worried... the next operation is in next month or after 2 months.. they are doing the 2 operations like anal opening through PULL THRU and Colostomy closure at the same time..

If at all the bowel movements is not good,,, does this happens his lifetime....

Pllease any one suggest me...

Iam very much worried...

Tears rolling my eyes when i get this issue on my mind...

cheer09 on February 19, 2014:

Can any one say how it will take to get bowel management for the child born with high IA??

bornot2b1 on April 19, 2013:

Thanks for sharing with us your experience. I met a young couple (late teens) who got their first child with this problem. They were young so they were concerned, but I don't think they really understood what went on. The young mother told me vaguely what happened to her newborn, but she shook her head, "I let the doctors and nurses worry about this for me, my mom and dad helps me lots for the time being"... I moved house soon afterwards, but always thought about that young couple, and have often wondered what really caused that defect in baby in the first place (I could have googled it I guess). I understand lots now from reading your lens. (I am always interested in genetic study).

Genesis Davies (author) from Guatemala on December 06, 2012:

@tarkaa-j: Dorian still has this issue. Talk to her doctor about using something like lactulose, which is a natural stool softener. You can also give her prune juice and fruits to help if she's constipated. Keep in mind, though, that this is the first t