I'm a work-at-home, homeschooling mom of three and a Canadian expat living in Guatemala.
My Baby Was Born Without an Anus
My son was born with an imperforate anus. This article was written for those who have had a baby with imperforate anus or anyone whose baby may be at risk (there may be genetic causes, but the cause is unknown).
Approximately one in 5,000 newborns are born with an imperforate anus, a birth (congenital) defect in which the opening of the anus is missing, misplaced, or malformed, causing partial or complete blockage. It is slightly more common in males.
What Is an Imperforate Anus?
Quite simply, an imperforate anus is when there is little or no anal opening. In some cases, there may be a very small opening (called a fistula) that may not be big enough to allow the newborn to defecate. And some cases, the fistula opens into the urethra or vagina.
Imperforate anus is more common in males than in females and occurs once in every 5,000 births or so. Unfortunately, this type of birth defect is often accompanied by other issues.
Is Imperforate Anus a Birth Defect?
"Your baby has a birth defect." These are words that no parent wants to hear. It's a terrifying moment for any parent, one that I have lived through myself. I'll share our experiences and information to help you understand just what it is and what it means for your child. Most children born with imperforate anus can be helped quickly, while some will experience various complications, depending on the severity of the birth defect.
Can It Be Detected With an Ultrasound?
With an imperforate anus, the diagnosis is usually a total surprise since it doesn't show up on ultrasounds. That means that moments after the birth, you'll be told that there is something wrong with your baby and no one yet knows how bad it will be.
Your baby will probably be diagnosed soon after birth, since one of the tests that the doctors or nurses do when checking a newborn over is to 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 will cause 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 allows a small amount of feces to pass. This fistula may not be where the anus would normally be. In females, it may be in the vagina; in males, it may be in the urethra.
2 Types of Imperforate Anus
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 is when the intestines end further up in the abdomen. In some extreme cases in females, the urethra, vagina, and rectum are all one opening called a cloaca.
Other Possible Complications
Many children born with imperforate anus have additional problems in other parts of their digestive tract or other issues—including cardiac, nervous, or urinary issues— which may require treatment. The most common accompanying issues include:
- Spinal issues
- Heart issues
- Tracheoesophageal fistula
- Esophageal atresia
- Kidney and bladder issues
- Possible limb malformations
Shortly after birth, your baby will undergo several tests 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 matures.
Treatments for Imperforate Anus
There are basically two options for treating an imperforate anus: anoplasty for minor issues or surgery(s) to repair major issues with the colon and anal opening. A colostomy will also likely be performed.
- Anoplasty. If there is only a thin layer of skin over the anal opening, an anoplasty can be done to open 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. The most common treatment is a colostomy, 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. The colostomy will likely be left in place for 2 to 3 more months.
- Surgery. In more complicated cases, the colostomy will be followed by a second surgery (or more) to reposition the colon and create an anal opening.
What Happens After a Colostomy?
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 the use of a colostomy bag (although there are alternatives—we used a folded diaper which needed to be changed 15-20 times a day). This bag seals around the stoma and all the feces just go into this.
Infant Colostomy Bags
Finding infant-sized colostomy bags can be a challenge. With my son, we resorted to other methods because colostomy bags for his size were impossible to find.
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!
Changing the Colostomy Bag
The bag needs to be changed frequently. You can open the bottom of the bag to remove the feces. 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.
Is It Permanent?
The colostomy is very, very rarely permanent. Your child will need reconstructive surgery on their anus and then the colostomy can be reversed.
Your child will probably take a lot of antibiotics, and these can stain baby teeth. . . don't worry, the adult teeth should come in just fine.
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.
Depending on what other issues your child has, your doctor will most likely set a tentative timeline for follow-up surgeries. These vary from country to country. For example, my son 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.
We had something very scary happen to our son when he was seven years old. 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 chance of children with abdominal surgery getting intestinal adhesions. 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. If you suspect your child is not ok, take them to the doctor to determine if there is a blockage.
Anorectal malformations are rarely fatal by themselves and can usually be treated surgically. The extent of the surgery required depends on the extent of the malformation of the anus. Surgery can be complicated by issues such as intestinal perforation, infection, and sepsis. Imperforate anus may be accompanied by cardiac and/or renal issues, however, which may be life-threatening.
Long-Term Outlook of Imperforate Anus
After surgery, the long-term outlook for children depends on many factors. Some will end up with normal stool patterns, while others may experience lifelong issues with constipation or incontinence. Long-term issues include:
- issues with bowel control
- issues with bladder control
- issues with sexual function.
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 our son 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. Kids are a blessing and so much fun . . . no matter what they've gone through.
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?
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 one that appeals.
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 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 in 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 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 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 and withered 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. 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.
Looking for more information? You will find plenty at Cincinnati Children's Anorectal Malformations site.
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:
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.
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 time she's had to do any work to get the stool out . . . with the colostomy, it just comes out, now she has to work a bit to get things out and it's a new sensation.
tarkaa-j on December 05, 2012:
@tarkaa-j: Anoplasty over and our baby girl is home. But undergoes extreme straining before passing stool. And does this over 4-5 times a day. we are quite worried with this development. what do we do?
Othercatt on November 29, 2012:
My son was born with Townes-Brocks Syndrome. We were very fortunate because he didn't suffer from it's most common feature, an imperforate anus. Instead, he has the hand and ear deformations. I agree that the most important thing is to show them love. My son grew up knowing he's normal and that his deformations are nothing to be ashamed of. In fact, I think he's quite proud of them!
nicole-andertonsmith on October 29, 2012:
@Dustyrose0425: Hi Dustyrose I found this product called Dry like me toilet training pads from China,a pad u put in his underpants.I love them and my son feels like a big boy and they are cheaper than pull ups.If 1 is to small put 1near front and another 2 overlap behind.Visit www.drylikeme.com.Hope it is helpful.
nicole-andertonsmith on October 29, 2012:
@Protea: Hi Protea nice 2 hear from u.I live in Weltevreden Park Johannesburg.If u not 2 far we could get together.Send me ur tel no: so we can arrange it.Else e-mail whatever suits u.Thanx
nicole-andertonsmith on October 29, 2012:
@tarkaa-j: I have used Duphalac syryp or dry powder sprinkle over cereal.It is a natural sugar,no chemicals.Hope it works.
Protea on October 28, 2012:
@nicole-andertonsmith: Hi Nicole. I have just given birth and my daughter has IA. I am looking for other people in South Africa to connect with?
Genesis Davies (author) from Guatemala on October 16, 2012:
@tarkaa-j: Your doctor will be able to advise you best, but we have found that diet is very important in maintaining normal bowel movements. We've mostly eliminated processed flour, sugar, and dairy, but you might want to experiment. Adding extra fiber to the diet helps. Dorian is also taking Lactulose (milk sugar) and mozapride, which helps stimulate the bowels. Unfortunately, constipation seems to be a lifelong struggle for kids with IA, but exercise and diet really do help.
tarkaa-j on October 16, 2012:
My daughter with an imperorate anus (with a fistula close to the virgina)is now on bed after a corrective suggery has been carried out . The fisula has been closed and an anal opening made. she passed stools only twice after the sugery.But for the past 5 days she cannot after hard strugles. is it normal and what can be done for to pass stool normally and for how long?
moonlitta on September 07, 2012:
Sincere admirations for your courage, strength and open heart. I believe Dorian will have the happy life he deserves as he's had it till now.
Daniel458 on September 03, 2012:
@mrsfelbel: Hi my son is 6 yrs old next month, born with high I.A. we had Dr Gerstle at sick kids at Toronto who did a great job. My son went to Jk last year without any issues minor soiling although it was only mon, wed, and every other fri. He will be grade 1 this week every day and yes we are still nervous and anxiety running high. one thing that you may want to start when he turns 3 is the high fibre diet and try to find the right foods that will help him have the big bowel movement we use prune paste at presidents choice superstore (small glass jar)with his applesauce in the evening, and no white flour based foods otherwise constipation, we learned that these will cause the hard poops that are very painful him to bear down and push out ( around 4 yrs old) At 24 to about 36 months you'll find that the diaper is soiled a lot, but that does gradually get to. fewer and fewer "movements". We are currently at 2 per day Potty training was a bit trying but our son started knowing to go eventually, sorry, it took so long i don't have timelines. This is about the time when the high fiber diet was started a little late but we didn't know what was best. We found that 1tablespoon of prunes to his small bowl of apple sauce was a good balance. By 3- 4 he started noticing that "something" was coming. And goes by himself, wipe gently if there is prolapse showing and don't worry about a little bleeding it could be from the wiping theprolapse too hard. We have to try to keep this high fiber diet going, it's good for him, Go at this one day at a time otherwise you may set yourself up for disappointment. Our son is still very happy and a handful but still a joy. what can I say he's a boy. It's the environment that you create that will help him down the road,
joeysmama on August 07, 2012:
@DannyBrazil: Our son had problems around his stoma where the appliance was attached and we too ditched the bags for a while to allow his skin to heal. He was young and didn't roll around yet so it was easier to keep him from getting around. We just used bigger diapers and lots of diaper cream. We found that the first nurse had taught us to attach the appliance with a barrier cream and that was the main problem. We needed to use adhesive remover to get the appliance off and we weren't getting a good seal around his stoma with his skin being irritated. So we were in the hospital following his pull through surgery and a nurse who specialized in colostomies told us to ditch the barrier cream and apply the appliance right to his skin. This seemed to make the big difference. She also helped us make sure the opening to the bag was the right size and gave us a putty to put around the hole we cut to keep a good seal. I wish you well.
joeysmama on August 07, 2012:
My son was born in May of 2011 with an ia and we were shocked to say the least! He was born on a Monday morning and by Tuesday evening, when he hadn't passed his first bowel movement, they took him to the nursery to stimulate his rectum. It is at that point they discovered his condition. He was transferred to a different hospital and had his first surgery (colostomy) on Wednesday morning. He was a big boy, over 9lbs, at birth so he had his rectal pull through at 12 weeks. He had his final surgery when he was 4 months old. We just started seeing a problem with constipation within the last couple of months. His condition was not severe and his surgeon said he should have good control of his bowels. He is my fourth child and the whole experience was overwhelming at times but his surgeon and nurses were (and still are) very helpful with every step along this journey. I too had never heard of this condition before my son. I am open to talk to anyone who would like.
mrsfelbel on July 22, 2012:
@StarLaughter: I found that using a tensor bandage helped once my son got more active. That way the seal had more support than the onsies could give.
mrsfelbel on July 22, 2012:
My son is 19 months and was born with high imperforate anus. He had his final surgery last month. We are dealing with this well and he is such a ham. He is always smiling and is such a good kid and I am so afraid for him when he starts school dealing with his peers as kids can be cruel (he is not in daycare) I don't want him to lose his hapiness. I just want to talk to someone who is dealing with this in Canada, as Ive read a few blogs about kids 18-21 years of age and they stated they thought about suicide and I DON'T want that for my son who is such a carefree spirit... for now. We could meet?
alex89 lm on July 17, 2012:
I am so sorry to hear about your son, and so happy that he is doing ok. I had never heard of this problem before, but i do have some experience with the operation that he went through. I had my intestine burst earlier this year as a result of Crohns, and they had to do an emergency surgery that resulted in a temporary ileostomy (basically the same thing, but it leaves the colon detached to give it a chance to rest). I am lucky that my situation is only temporary, but I can vouch for the emotional trauma that this can cause in a person, but also that it can be overcome with the love and support of family and friends. Based on this lens, I am sure your son will be able to have a normal life, you are clearly giving him all of your love and support. Thank you for writing this.
I also wanted to say that I use the Hollister products and they are great, especially the lubricating deodorant, which is a blessing to have.
Rose Jones on July 15, 2012:
My goodness you have gone through so much. I am a nurse, but I learned a lot. An angel blessing for sharing so much great information with parents that need it, and for caring so much for your son.
Genesis Davies (author) from Guatemala on July 09, 2012:
@nicole-andertonsmith: We grind our own wheat and have found this very beneficial. Dorian still has some issues with continence, but we manage to keep things regular with diet (veggies and fruit, whole grains) and he also takes mozapride, which helps increase intestinal motility.
nicole-andertonsmith on July 09, 2012:
Hi I live in South Africa My son was born with high perforite annus which was pulled through at 6months.He is now 3yrs and I am potty training,some good days,some not so good.I just want some advise on how to control accidents when I send him 2 school and I'm not there 2 help him?Maybe diet not laxatives please nor butt plugs something more natural not harmful.Please any advise?
Kathy McGraw from California on June 22, 2012:
A fascinating read as I knew nothing of this condition. It's heartwarming to read not only your story, but the comments from the other people who have a child born with this condition. Dorian is a doll...love his big smile, and you said it perfectly...treat them like any other child, with love, and tend to the disability! Sure looks like it worked!
grannythimble on June 08, 2012:
Hi what amazing stories of courage and love. I am a grandma living in the UK and will be 70 in November. I was born like your babies and my heart goes out to everyone of you. I have just written my story and published it on Kindle. It is called Has She Been Yet? I hope some of you will read it and be encouraged and think that if I can have a wonderful life you and your children can. I am here for you all loving you and being your granny xxx Beryl
Dustyrose0425 on June 03, 2012:
My son was born with a high imperforate anus. He will 7 this week. Thank you Dorian's mom for sharing all the info you shared about your family. It's good to know that I am not alone in this. You did say in the article that you have purchased "underwear with a plastic liner", where an I purchase these? We use pull ups still but I need something to help him feel like a big boy!! Any help would be greatly appreciated. Thanks in advance
microfarmproject on June 03, 2012:
Thank you for candidly sharing your story. I am sure that it will help others.
DannyBrazil on May 25, 2012:
Hello good people,
It is very interesting how, as normal people, we never fully understand something till we need to "live" it (unfortunately sometimes. My name is Danny and I live in Brazil. I have a 2 month old baby girl, Carolina, she was born with an anomaly which the anus is VERY close to the vagina ,the anus is NOT "imperforated anus". She had to pass through a colostomy surgery and in the future, plastic surgery and after they will reverse the colostomy. Lots of things to say, to talk about, to get some support, but now we have come into a situation where she has skin problems. The thing is that we abandoned the "colostomy bags" as she is a baby, she moves a lot and the bag always detached and leaks, which is not good at all. I have read that using a diaper on top of the colostomy and then the normal diaper could work, we tried, actually it is WAY easier to remove and she doesn't complain at all. Now, the problems: I don't know why her skin in the area around the colostomy is starting to crack (irritated skin), like "open wounds" as we wash it we can understand that it doesn't HURT a lot, cus she doesn't SCREAM when we do so. I wanted to know if any of you, brave people, came up with such an issue, maybe heard of somebody. Anyway, for the first time it's enough, hope people answer. Cheers
pinoy19 on April 17, 2012:
My son on this picture profile is an imperforated anus. He has colostomy since birth. Today exactly 10 months old we are here in the Iloilo Doctors Hospital. For PSARP procedure then later on after three months of healing is the colostomy closure. I hope everything is gonna be ok. Dr. Roberto Lozada is the one who hold this operation for my son. He his specialist in pediatric surgery.
keycece123 on April 07, 2012:
yeah I was referring to the pads women wear, I get him the pantie liners that are a little longer but not so thick. I has been working but he is a boy and getting older so i am not sure how long this is going to be ok for. Also thanks for the tip on adding more fiber to his diet, we have been doin that for about a month now and I believe it has helped a little. Hope that helps, good luck
shahanarah-hasan on April 04, 2012:
@keycece123: Hi Keycece123, thanks for sharing your trick about your son that you make him using a pad in his underware. Do you mean the one women use during their monthly cycle??? My daughter was also born with Anorectal Malformation. She is now 3 years and 9 months. She also leaks 2/3 times a day. I was also thinking to give her pad in her panty but was not sure if it is a good idea. Now after reading your post I am thinking to do the same. I don't know if you already have a solution for the constipation of your son. But i want to share my experience and the way i dealt with it about my daughter case. After trying a lots other things, with the prescription of the specialist i'm giving her laxative called Forlax. Along with laxative i'm also giving her fibrous food, vegetables like spinach, okra (all the slippery vegetables), beans, brucoli etc. For my daughter spinach and okra works the best. Among fruits, for my daughter kiwi, strawberry and orange works very well. So I think you can also try to give him different types vegetables and fruits and try to know which works best for him. and most importantly if you enriched his meals with fibrous food i think it will work better. Give him only brown bread, brown pasta or that one enriched with fibre. I am applying all those things to my daughter case and it really going better for the last 3 months. May be you have already tried all those things, if not then give it a try....
Kay on March 21, 2012:
Wow, what an amazing story. Dorian is such a handsome little fella. I'm sorry to hear there have been some complications along the way but I truly am amazed at all they have been able to do for him already. Thanks for sharing his story!
keycece123 on January 16, 2012:
Hi everyone, I have not written on here for awhile but I have a now 6 year old son that was born with imperforate anus and was just wondering if anyone has experienced problems at his age with constipation? In the beginning my son couldnt control his bowel movements, so we have come a long way from him going to the bathroom all day in his pants. I was concerned because he was in pull ups until a year ago and with him in kindergarten I did not want him to feel bad or any other kids to tease him if he smelled, but I must say it went pretty well. I found a little trick for him to do so that he could get out of pull ups and feel like a big boy, but also so no one would see or smell his pull up or hear it when he walked. I had him wear a pad(maxi) in his underwear. When I told people about it they thought it was a good idea, because my son just leaks a lil and not really fully goes in his underwear. I researched and looked up so many options but could not find anything that did not say stay with a pullup. I am sharing this in case any parent are going through this with their child especially ones in school. My only concern is now trying to find out ways to help this constipation issue, which is why he is leaking in his underwear. I hope the specialist can help, but if anyone else has information to share please do. Thank you
anonymous on January 13, 2012:
by all means if any parents would like to ask me questions about this experience your welcome too ask! its very rare the whole thing growing up telling people i work with telling bf's very hard. i still have problems i suffer with instead of asking for help i get on with it now! the whole wanting a child is very hard as well because my whole bowels don't work as normal my body is constantly in overdrive for me to get pregnant its hard for my body to get sufficant food so eating for two! is a no for me so it does have its long term effects tho your child might be ok for a few weeks. they are being strong, i also found because i was leaking loads i kept getting worms. this made my parents crack up thinknig how low can this situation go! my body would bruise easily i was always weak. i have weighed the same since i was 16 never put weight on always losing it. one point my body gave up an shut down had enough this was in 2009 my body had a virus on the main valuve to the heart i was in hospital for nearly a month. the whole experience has made me appreciate life loads i could of died when i was born. even growing up my mum got bowel cancer so im now under a mackmillen nurse because of the defect connection being bowel im now on a risk! my mum was left with a colostoym bag on her stomach. don't listen to doctors the best thing for parents is to speak to those who have been through it. i have never shared my illness as i have always been embarressed by it talking about an anus seems dirty when in actual fact its human nature. this is the first time i have ever commented or gave information out..... it has only made me stronger, treat your child normal. don't make them feel ill my parents did with me for a while i craked i got suicidal i couldn't cope... this is me now :) www.facebook.com/xgembox... all the best xxx
anonymous on January 13, 2012:
Hi im gemma im from england i was born here im now 24 years old. When i was born i had an imperfortated anus, i found the whole experience growing up very hard. i was very ill at times but most of all to let all parents who are going through this that your child will be ok im one of the proof in the uk that everything will be ok :) xxx
anonymous on November 04, 2011:
Thank you for sharing your story , this , I am sure will help a lot of other parents, and educate those like myself who have never heard of this. Blessed*
Mary Crowther from Havre de Grace on October 31, 2011:
Wonderful and compassionate lens!
SamandZoeysMom on September 26, 2011:
@logansgirl: I just read your post, My son was born with this as well and we live in WV. We
UKGhostwriter on April 08, 2011:
Thank you for sharing this very informative lens
MrWidemouth on April 04, 2011:
@MrWidemouth: Correction - Dorian :)
MrWidemouth on April 04, 2011:
If you email me your mailing address I will send you a few complimentary bottles of LaxaCare to try. Kind regards, Stephen
MrWidemouth on April 04, 2011:
Dorian is quite the gift and couldn't have been born to better parents! I'm also a Canadian and have worked in the natural health industry for about 20 years. I mention this because based on my research soy is a very controversial food especially for allergies and it is hard on the stomach if it has not been previously fermented (as it is in Asian countries where it is popular). The protein has been modified either genetically or by cross breeding and it can be quite difficult to digest and it also increases free estrogen in the system which is not desirable in abundance. I also know of a product that can help with optimal bowel function. It is a herbal formula that has been clinically tested. It is also not the standard laxative that purges the system forcefully but it works gently. In North America it is called LaxaCare and internationally known as Herbolax. The company is Himalya Herbal Health Care. Here is a link for direct shipment from the U.S. http://www.himalayausa.com/herbalformulas/laxacare... You can call them directly to find out more and speak to an on staff M.D. regarding specific details 1-800-869-4640. This trial has certainly strengthened you and your relationship with Adrian not to mention the many people you have helped through sharing in this process. God Bless!
superglider1550 on March 27, 2011:
Our daughter was born with an imperforate anus and a tethered spinal cord. She had the spinal cord untethered when she was 4 months old and she is doing great from that. We also faced some issues with the colostomy bags at first but we figured out what works best for us after some trial and error. We use the Hollister 3778 bags and change them daily. We found out the colostomy bag manufacturers are very helpful and will send you a large selection of samples to help you find what works best for your situation. You just have to call them. Our little girl's surgery to create her anal opening is scheduled for next week so we are getting a little nervous about everything. Your site has helped to ease some of our worries. Thank you.
vanidiana24 on March 22, 2011:
It's very nice of you to share your story, I pray your son grows up strong and healthy.
vanidiana24 on March 22, 2011:
It's very nice of you to share your story, I pray your son grows up strong and healthy.
blessedmomto7 on March 16, 2011:
Your son is beautiful! Thanks for sharing your story. I lensrolled it to my baby needs surgery lens.
logansgirl on March 01, 2011:
My daughter-in-law was told that her boy child my be born without an anus. He is due at the end of this month. We had never heard of this problem before and any information would be helpful. We live in West Virginia, and he will be born a Women's and Childrens Hospital. Is there any other hospitals in suronding areas better eqipited for this problem.
Wendy Leanne from Texas on February 22, 2011:
Thank you for sharing your story.
*Blessed by a squid angel.
alma2 on February 11, 2011:
@blessed-mom: My daughter just had her reversal and is going thru the same thing. How things are working now for your baby it changed? I am very concerned about it too.
alma2 on February 11, 2011:
@cjk1231: Hi. I found out that it is important to change the colostomy bag before it starts leaking, For my daughter (15 months it was every other day, at 3 weeks it was every 5 to 4 days) once i catch up with it she didn't have more rash around the area. Her surgeon recommended a lotion (a butt paste) we put on around the rash and it helped. I will take the bag and skin barrier out put the lotion and leave it without a bag for few hours just cover with some gause which has to be change ofter but it works believe me. I also used as colostomy supplies little ones by convatec we tried all the others and this are the best. I was able to get them thru Bryram Health Care because you wont be able to find it local. Good luck and just take one day at the time it is challenging but you will be able to take care of you little angel.
Nancy Oram on February 11, 2011:
I found this to be very informative and enlightening. I had vaguely heard of it, but not the exact name or just what it was. Very well done.
MomOf4Boys on February 03, 2011:
Our son was born in January 2009 with imperforate anus. We were so fortunate to do the anoplasty immediately, so I do not have any colostomy experience... But, we are wrestling with constipation very frequently. I was relieved to hear that it's a common issue. My son also has had to drink thickened liquids, due to dysphagia. Anyone else experiencing this? We are just wondering if it goes hand-in-hand with the IA, or if it's another issue in and of itself. He just turned two and is not saying very much, so we are also working with a speech path. Developmentally (less the speech), he is passing with flying colors! We just are hopeful he will be able to participate in normal activities, like his brothers.
anonymous on January 23, 2011:
@keycece123: My son was borin in 2005 with a high IA also. He just started Kindergarten. Please call me 757-869-4599. I can help you.
anonymous on January 23, 2011:
@cjk1231: TI have been thru the exact same thing you have. Please call me 757-869-4599. I CAN help you..I promise.
Genesis Davies (author) from Guatemala on January 21, 2011:
@cjk1231: We live in Guatemala, so I'm not sure if the same creams are available. We used Crema Lassar, which is super thick and we did use it after every change. It never seemed to leave a crust and did a very good job of sealing the area . . . we still use it for the occasional rash with both our sons! Also, when the area was extremely raw, we used a pain spray for children (can't remember the name) that would dull the sensation while we spread the cream on, since that could be painful for him.
The diapers we simply folded into strips that were about 3-4" wide and then used a soft strip of cloth to tie it in place, then the disposable diaper snugged over the lower edge. We also used onesies to help keep everything in place. It takes a bit of practice to get it so the diaper doesn't slide around, which I'm sure you've already experienced!
We used cloth the entire time because there simply were no colostomy bags available.
cjk1231 on January 21, 2011:
@athomemomblog: How exactly would you use the cloth diaper?? Do you have a type of cream that works the best. We are using "Butt Paste" right now and am wondering if something like Aquafor may be better since it won't leave the "crusting" that the paste does. Any thoughts on this?? Did you apply the cream with each change and use it almost as a skin barrier? Also did you use the cloth diapers instead of the colostomy bags for the whole time your child had the colostomy or would you rotate with using the bags? The bags are just so difficult and are not working!
Genesis Davies (author) from Guatemala on January 20, 2011:
@cjk1231: We did the same thing because colostomy bags were hard to find and I couldn't stand the horrible rashes and ripping off of skin. We used cloth diapers, which may be a little easier, around the stoma and then a disposable for pee.
The powder with cream on top works wonders! We used this with Dorian and it really did help. As your son is still quite little, it will take some time for his skin to get used to the irritation, but it does harden up a bit. Later, when he has solid food, it will usually cause a rash again, and again when he has his final pull through surgery, since his bottom will be new to poop. Hope that helps! Feel free to join the forum, we have over 60 parents and even adults who were born with IA, who can answer more of your questions.
cjk1231 on January 20, 2011:
My 3 week old son has IA and has a colostomy. We have had the hardest time getting the bag to stay on him. We have a home health nurse coming to the house and have been "doing everything exactly right," but it still won't stay on well. The longest we had gotten one to stay on was about 36 hrs (we were thrilled!!) He now has a rash around the stoma and we have had to apply nystatin powder to the rash. We started using the powder 2 days ago and had to change the bag 7x in 24 hrs yesterday. I am beyond frustrated and don't know what else to do. Currently, we have a diaper that is going horizontally across his abdomen, in addition to a regular diaper to catch his urine. We did it this way b/c his stool comes out the most lateral aspect of the stoma and leaks dripping down the side of his lower abdomen. The home health nurse suggested we apply the powder and then put some diaper rash cream over the powder to seal in the powder and to serve as a barrier. Does anyone have any thoughts on this method?? I am hoping this works, as this seems to be a one person job and applying the colostomy bag is currently not a 1 person job. I would love some input. Thanks.
Jen from California on November 16, 2010:
Thank you for this great resource. My friend's son just had his first surgery to correct his imperforate anus. I'm going to pass this page on to her.
thekellys on October 15, 2010:
@blessed-mom: My daugher just had the anoplasty 3 weeks ago and we have started dialations now, It isn't going well at all, she cries and cries. Shes only 3 months old. We have been told it will get better after a few times but I don't believe it. Can you give me some advice and input. We have been told we have to do this for at least 3 weeks before the colostomy reversal. Nothing about after. Also did you have to do any prepping of the bottom before the reversal?? Any advice would be great
mICHELLE2801 on October 14, 2010:
@blessed-mom: There are two things that I can recommend. There is a spray, you can only buy it online, it is called spray seal. Google it with diaper rash. I found that the Aquaphor in the tubs, smeared on really thick, makes a world of difference. It will lessen by half in just one day! Good Luck
mICHELLE2801 on October 14, 2010:
@athomemomblog: Thanks for the advice. One of his doctors even recommended an EMG on the muscles in the area. I refused. I had one on my legs and it was a small form of torture. I will wait another year or two before I subject him to that test
mICHELLE2801 on October 14, 2010:
@keycece123: You started training young. I have never had a problem with constipation, only the opposite. My son is three. I can sometimes see, when I am changing his diaper, that he can pull his(man made) rectum up inside. But as long as the poop is still runny he can't hold it in. I think that you may have a much simpler problem. Are you using pull ups or diapers. I find that my son does not tell me he has poop in the thicker diapers, but he does if he feels moisture in the pull ups. I am still at the stage where he runs because he likes the warm poop..LOL. Good luck! I like knowing we are not alone, but it sucks that other children must suffer this as well.
mICHELLE2801 on October 14, 2010:
@cy_lady: Cy_lady...We are all going through our own struggles. If you need help, go to your local social services office, Social securtiy administration, or even any catholic church or synogogue for help. If they can't help you, they will find someone who can. I am asking that you please don't ask for anything but advice here. We all need the support and I don't want to alienate any mohters who think that they may be scammed, when all they need is a little advice, or support. I know you are going through tough time, but there are so many programs in place to help. Good Luck!
mICHELLE2801 on October 14, 2010:
@korcam: Thanks! My son is almost three and I worry a ton. I am sure you feel the same way. I am glad that your son has progressed as planned. Did he ever prolapse? My son prolapsed two times in the first nine months. My son had 5 surgeries within the first 19months of life. We still deal with pretty mean diaper rash, I write it off as the hole is so large that there is always something leaking out.
korcam on October 13, 2010:
@keycece123: Hi. My son was born with an imperforated anus in 2003. He had surgery at birth. I understand what you are going through with potty training. My son was 4 1/2 (almost 5) before he was COMPLETELY potty trained. I didn't think it was ever going to happen. He is now a 7 yr old and no one even knows he has any issues. Although, we still have issues with wiping. I didn't understand until I was potty training my 4 yr old who does not have IA. With my 7 yr old, we use a ton of toilet paper. And he has a hard time cleaning it all off by himself. With my 4 yr old, there is hardly anything to wipe. I guess its because the hole is so much bigger. This is probably more my issue than his. We do still deal with the occasional constipation, but not often. But it is all getting better the older he gets!
My son has always loved milk and had tons of it. So I don't think that is an issue.
I hope this has helped. I wish you the best of luck. Hang in there.... it gets better.
blessed-mom on September 19, 2010:
Hello. My son who is now 5 months old was born with imperforated anus. On second day of birth he went through a colostomy operation, thereafter anoplasty when he was 3 months old and followed by colostomy reversal at 4 months old. Currenly I am doing the dialation and this will continue for the next 6 months. What concerns me now is the amount of bowel movement he is having in a day is same as during the time he was passing feces through his stoma. And at each diaper change there will be some feces. Is this normal and also this has caused his diaper rash not healing.
thekellys on September 14, 2010:
My daughter is 9 weeks old with imperforated anus. She has very irritated skin around her stoma and I wanted to know if Aquaphor would help alleviate this problem or if there is something better we should try. We are trying to stay away from zinc oxide do to 1 child already being allergic to it and it seemed to make it worse. We have also tried ILEX and that didn't seem to help.
keycece123 on March 19, 2010:
@cy_lady: Thank u and good luck to u and ur daughter. My son had the take down the first year of his life and i am very thankful for that. I know and remember how hard him having the bag was and the changing and all the questions from ppl seeing the bag on him. I am a single mother and that was so hard for me, dealing with by myself. Now im just concerned about him gettin teased also because he's almost 5 and still wearing pull ups and getting turned down for things because he is still in pull ups. I trust in god everything will workout,
cy_lady on March 19, 2010:
@keycece123: It's not his fault at all, they really can't control of when they will let it go. That's why my daughter has colostomy bag all the time so that it will not spoil. We change it every 3 hours or if it has "something" on it already. It's good that he can go to the bathroom alone already, like my daughter.
Here in the Philippines, we have surgical operations to normalize that illness. My daughter was supposedly schedule again for closure operation last december but we're really lack of money. But we'll get by. We have to do something on it before June coz we don't want to experience the same things last year. We had to have her stop from going to school coz she might end up a laughing stuff at school. As much as possible I want her to have a normal life.
You can make it, have faith. everything will fall into places and will be okay in God's time. God Bless Us All.
keycece123 on March 19, 2010:
Hi my son Marcellus was born with imperfortated anus in 2005 and he is know 4 years old. We have been trying to do the potty training now for 2 years. I am getting so worried that this is not going to change. He goes to the bathroom all day long and doesn't say he has to go to the bathroom until he has went already. Do you think he feels he has to go or is it not his fault? Also is there anything we can do to try to help this situation? We have tried more fiber and he also takes mirlax because past experiences he has gotten constipated pretty bad. Do you know if there are certain things in his diet he should stay away from like milk? I am so glad there are sites like this cause i feel so alone and helpless at times. It nice to know im not alone. Any suggestions would help. Thank you
cy_lady on March 08, 2010:
My daughter has imperforate anus. I was really shocked when the doctor told me about it and that she needs to undergone colostomy operation. It was good thing that my mom was so supportive to me, she told me she'll help me taking care of the baby.
My daughter has undergone the next operation last May of 2008, where the doctors conducted a surgery operation to open her anus. The next one was last November 26, 2008 which eventually unsuccessful that causes the almost death of my daughter. It cost us big time that even up to now, we still has debts to pay for we are just minimum wage earners and the money we had for the said operation was just enough and no contingent for worst things that might happened.
Right now, we are looking for sponsors who have good and generous heart to finance her operation. She's now 4 and a half years old. Her mess is too smelly already that we had her stop from going to school even if she tops No. 1 in her class because of it. It's hurtful to see that her playmates would sometimes go away from her coz her body waste is uncontrollable. She already felt shame and sometimes she runs home because she's smelly already. Most of the time, she stays home and we just buy her toys for her to play with.
I hope I could fine a sponsor here. You can contact me at 639184497987 (mobile) or email me at firstname.lastname@example.org.
Any help would be appreciated. I have videos of her when her operation leak during the closure of her colostomy operation. Every time I see it, it never fails to make me cry.
As a mother, all I want is only what's best for my child.
God Bless to all mothers, especially to those who have kids like mine. God gave them to us because He knows, there'll be a way we can surpass it and He knows that we can handle it.
StarLaughter on January 11, 2010:
Hi there, and thank you for sharing your story.
My son Tomas was also born with imperforate anus, and like you we spent days in complete shock. It was a condition I had never heard of, so we had a lot of reading up to do. On day 2 of his life he underwent the surgery to give him a colostomy, and spent a further 9 days in the hospital.
The staff at the Womens and Childrens in Adelaide were amazing, and they allowed myself and my partner to stay for 3 of those days in the maternity ward, so that we could visit (and express for) Tomas regularly. They were so informative and reassuring, especially our Stomaltherapist, Lisa, who shared a wealth of information and has still maintained regular contact to check on Tomas's progress.
He has had 3 MRI's now (as well as some other appointments to test for reflux, fluid on the brain etc), and we were told that the likelihood of Tomas ever having *some* muscle control/continence was very slim. It was then that we decided that we would not go ahead with the anoplasty/reversal, as we are afraid of making the wrong decision for him, and if he will have little muscle control anyway, we figure it can wait for him to make that choice.
We are very thankful to live in the country we do, as our government has a funding scheme for colostomates, and as a result we have not had to pay a cent for his bags, powders, tapes etc. I am saddened to hear that not many countries offer this funding, and hope that this changes in the near future.
Tomas is now 4 months old, and has discovered that his bag is fun to grab and pull on. This has made for a few messy mid-night baths (which he loves), and I am hoping to find something a bit more protective than his onsies (for this hot weather). It is very cute though!
He is a very happy, relaxed baby who is an absolute pleasure to be around. Any fears I may have had about his development or his life as a colostomate have been dashed, and I now look forward to a happy and confident future with him. I am so grateful that imperforate anus was the worst he had, as it is certainly nothing to prevent him from a very normal and adventurous life!
Thank you again for sharing yours and Dorian's story, it is always nice to see others who have gotten through it and are going strong! Take care, and all the best!
Genesis Davies (author) from Guatemala on January 09, 2010:
@mICHELLE2801: Dorian almost always has some feces in his diapers. We've been working on potty training lately and while he gets the pee part down, we are having issues with bowel incontinence. From my research, this is very common. Once your son gets a little older, there are programs that can help him learn bowel control, but for now, don't worry . . . he's not the only one! Remember that these children don't have the same muscle control of their sphincter and usually don't have the inner sphincter, either, so holding things in isn't easy for them.
mICHELLE2801 on January 09, 2010:
My son Jake was born with an imperforate anus in January of 2008. I found the defect several hour before we were to leave the hospital. Needless to say, 36 hours had passed before this was caught. My son had the normal colostomy, followed by reconstruction and finally the reversal. Within 24hrs the recum had ptolapsed, the Md said that we needed to wait 3 months before the repair. Again, after a week this time, it failed again. Another three months went by, and a second repair was done. This was completed in September of 2009. The Dr. started asking how many bowel movements Jake was having a day in July of 2009, and askes this every time we are at her office. My answer is always the same" Jake has never had a diaper that did not have feces in it." Have you heard of this before? My son turned 2 yesterday and I am glad to report that he has not prolapsed in 4 months. But he still has never had a dry diaper. Should I be seeking another Dr? Is the caused by poor medical care? I would appreciate any input from another family in the same situation. Maybe someone has advice on how we should procede.
Genesis Davies (author) from Guatemala on September 15, 2009:
[in reply to lionspaw2182] I haven't heard of anyone doing an anoplasty and then waiting for years to do the colostomy reversal, though it would certainly be feasible. What I would ask your surgeon is 1) Why does he feel it's necessary to do the anoplasty right now? Is there any particular reason if the anus isn't going to be needed for some time? and 2) What will the ongoing treatment be? We were told with Dorian that we had to do the anal dilations until after his colostomy reversal since the anus would grow shut again without constant use. Trust me, if possible, you do NOT want to be doing dilations long term, so definitely ask about that.
I hope all goes well with your little one. Feel free to email me with questions or just to let me know how he does with the surgery if you decide to go through with it.
lionspaw2182 on September 15, 2009:
My son was born with multiple birth defects due to mosaic trisomy five. He is only the nine worldwide that has been reported with this extremely rare genetic defect.
The least of his birth defects was his imperforate anus. He is almost 10 months and is scheduled to have his anoplasty a week from today (he had his colostomy 2 days after birth...while on blood thinners no less). He is still in the hospital and his primary nurse brought up some questions about doing the anoplasty and the colostomy take down. Do you know how common it is to have the anoplasty and then hold off on the colostomy take down for several years (there is a chance that the little guy might also have Hirshsprungs disease)? The surgeon is supposed to talk to us tomorrow, but he is all for going ahead with the surgery, whereas my husband and I are a little unsure. Any comments would be helpful.
Genesis Davies (author) from Guatemala on June 30, 2009:
[in reply to Angel_21simon] I wouldn't recommend using an ice bag on a colostomy. You can do what we did, just fold diapers into long strips that cover the entire colostomy and wrap partly around the body, then tie it in place with the garter. That will absorb the poop. You could also use strips of flannel, sheets, etc. but they need to be fairly thick to prevent leakage. They also need to be changed several times a day.
We used a dusting of cornstarch over the area to help dry it and also let it air between diaper changes to prevent serious rashes. The skin on the stomach isn't designed to withstand feces, so keeping it dry helps.
Genesis Davies (author) from Guatemala on June 30, 2009:
[in reply to jlbecher] Hi, Jennifer. We have had problems with constipation off and on over the past few years, though it is usually resolved with diet. Your daughter is still fairly young, so she is probably drinking quite a bit of milk, right? That can bung a kid up even more. We had to take Dorian off milk completely. Other things we basically eliminated from his diet included sugar, white flour and processed snacks.
As for the failure to thrive, that can come from the constipation in my experience. I should post some photos of Dorian when he ended up with an impacted bowel, he got soooooo skinny, he was nearly skeletal. But also, both my kids stopped putting on weight around 1 year and didn´t grow for about 3 months, so I´m not sure that isn´t normal, to tell you the truth!
Feel free to contact me through my lensmaster bio if you have more questions.
jlbecher on June 30, 2009:
My daughter had an anoplasty at 61/2 months. That was 5 months ago and we are still having follow up appointments and doing daily dilations. I wish I would have found this site before her surgery! She is still having constipation problems occasionally, in your experience is that normal? Also, at yesterday's weight check with her pediatrician he diagnosed her as "Failure to Thrive", due to her not gaining weight in a month. She eats like a champ, but is not gaining weight. We now have more tests scheduled, is there anyone who has had a similar experience?
Your advice is needed!!
Jennifer L Becher