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The Boy With An Imperforate Anus

You could be forgiven for thinking that on getting home, mine and Big Bro’s life would something akin to being normal. For a while I thought the same. I could finally start planning beyond a day in advance, there would be less things to carry around and more freedom in general. But that dream was a short lived thing and deep down, I knew that would be only a brief respite.

In April 2010, we were back in hospital for the next operation. It would be an operation of two parts, with a gap of a few months between each one, but after those two pieces of surgery, surely Big Bro would be given a break? The outlook was good and if all went well, there would be no need for any further intervention, of the surgical kind. Life would be able to begin in earnest.

When Big Bro was born, not only was he diagnosed with Oesophageal Atresia – which had by this time been operated on and completely fixed – but he also had an ano-rectal malformation called an, ‘Imperforate Anus’. He was basically born with no bum-hole, relying on a colostomy bag and a stoma to get rid of the waste from his body. His next operation would create an opening, where there should have been one and would pull through his bowel to enable him to finally do what nature intended him to do.

After surgery

After surgery

Just being back in that place sent shivers down my spine, not least because we were back in the same cot bay, where we had awaited his previous piece of surgery. However this time I was prepared. I was stronger and more sure of myself – I knew what would be happening and our stay there would be much shorter.

The operation itself was a breeze – by all accounts Big Bro was a model patient, even demanding a bottle in the recovery room – something which under half a year previously, he wouldn’t have been able to do! After the events of that time, even writing this part of the account, appears uninteresting, but it’s an important step to be considered on getting to where we are now.

We were out of hospital within about four days. Big Bro’s stoma and colostomy bag were still in place, to give the surgery time to heal and it was my job, to make sure that the opening didn’t heal over completely, otherwise we’d be back where we started. So twice a day, I diligently lubed up the brutal looking metal rod I’d been given and dilated his new opening, gradually increasing the size until everything was healed. It wasn’t a pleasant task for me or for Big Bro, but it had to be done and thank god – he wouldn’t be able to remember it!

Still, always smiling!

Still, always smiling!

When I think about it, that part of his journey, was probably the easiest. We were in and out with very little excitement and I’m glad of it. It would be his final piece of surgery, that would be one of the hardest, but not for surgical reasons. The ending to that part of his story, would see my whole world, turned upside down, leaving me questioning my own ability as a parent and seeing the seeds of my poor mental health, grow into great weeds of insecurity.

Have birth defects effected yours or your child’s life? How did you get through those difficult months? And, if you’d like to read the previous entries for Big Bro’s story, you can do so by clicking ‘Birth & Beyond’ in the menu bar.

Filed under: Life, Motherhood

About the Author

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Hello you! I'm Stacey, a self-confessed nerd, Tolkien fanatic, devourer of Pimms and a technological magpie. I mainly blog about parenting three Hobbits, however I'm slowly breaking free of the Shire in search of my freelancing fortune.

18 Comments

  1. Mary at Keynko

    Sounds like a horrendous time for everyone! It’s never easy being mum to a patient, not matter how many times you have to do it! I hope everything keps going onward and upwards for you all!

    • I think the fact that at that stage, everything was pretty uneventful that knocked me more than anything. I’m glad it was but it felt strange being in the know for a change. Next week will be my last post on that part of his journey – then I can tell you all how he is doing now at the lovely age of 3!

  2. Hi! I just found your blog and have been reading my way through some of your past posts. Your son is sooooo cute! My son, who just turned 5 in January, was born with high imperforate anus. Your story sounds a lot like mine; I had never heard of such a thing until about an hour after his birth. He has been diagnosed with a VACTERLs association because he also has renal issues and a low tethered spinal cord.

    I thought you might like the encouragement that he is now in kindergarten and doing just great. Potty training was a bit of a challenge, but he is able to go through all the normal activities of a child his age without embarrassment and only the very occasional minor accident. He has just entered the age where he is aware that he is not the same as everyone else (that he has scars, has to take laxatives to have a bowel movement, and use dilatation rods every day to stretch his anal opening) but it does not seem to make him self conscious or upset.

    It is hard having a child with a hidden disability, especially one so private and unknown. Feel free to email me any time!

    • Hi Laura,

      Thank you so much for commenting. It’s amazing how many children out there have the same condition and I’m glad that, due to the wonders of the internet, we have a chance to connect with other parents with similar stories.

      I’m so glad that your son is doing well. Mine is also at nursery age and although like you, potty training was a bit of struggle, he’s slowly got there. We use a suppository in the morning to help Big Bro to have a bowel movement, and these seems to be working well, ensuring that he doesn’t have any accidents during the day. Our main problem, is that he has very little sensation down there, so only knows he’s going, at the very last minute.

      Thank you again for reading and I’ll take a look at your own blog :)

      • Roseann

        was just reading your story and ours is very similar. My son was also born with an imperforate anus, we are struggling with the potty training part because he has very little feeling “back there.” It’s tough but we are getting thru. I just made him some cloth training underwear, pull ups are not cool for a 7 year old he says!!! Haha… Please keep in touch, it is a struggle going thru this and not knowing many people who have had this. I know I would love the company!

    • Roseann

      Hi Laura, I just found this post then jumped over to your blog. I would love to get in contact with you, my son was born with a high imperforate anus. He is going to be 8 in June. We are still having some struggles w potty training, I ride to find a way to contact you on your blog but couldn’t figure it out! Hopefully you’ll see this.

    • Kathy Locke

      I have a grandson who will be two years on March 13th. He is my hero!!! He was born with a high imperforate anus and vactrel. He has endured 12 surgeries.it is almost time to think about potty training. We are nervous and scared. He takes miralax Dailey and does not have formed stool. What are tips that you can share? This grandmas heart worries what the future holds for his daily life. I know that God makes no mistakes and has great plans for Miles life but I am struggling. Thank you for sharing journey.

  3. JB

    Thanx for the story. My son was just born this week with imperforate anus. It is devistating to think of what might have caused this. Ive never wanted kids because i have always been afraid of having a disabled baby. My wife and i finally decided on a baby and this happened. We are still waiting to find out if he has any other anomolies. Its heart breaking. These childeren dont need this. I enjoyed your story very much. It has given me hope
    Thank you J B

    • Hi JB. I’m glad that you found my post and that it has helped in some small way. It may seem like a huge hurdle to overcome at the moment. Your thoughts, emotions and life right now, will be focussed on ensuring your new baby thrives but I can assure you that it will get better.

      I felt the same way as you when Big Bro was born. It was like being in the middle of a whirlwind but you will cope! I don’t know where you are in the world, but surgeons now can work wonders. It may seem scary at the thought of what may happen in the future, but the rewards of seeing your child grow to be happy and beautiful, far outweighs it all. Take one day at a time and enjoy each and every one. That is the best that you can do!

      If you ever want to talk or ask questions about my own experience of this, then you are more than welcome to email me: info@fivesafellowship.com

  4. Luis

    THank you for posting this – my wife and I have been privately stressing out about potty training our 4 year old who was born with Imperforate anus. We’ve concluded all recommended surgeries, and now simply face the struggle of trying to work with our boy and make him want to use the potty. The trouble is that he simply thinks of the bathroom as quasi-punishment, I think he feels like he’s always on the potty. Also, we started a new day care that only superficially understands what his condition is like. I think our old day care was more accommodating to his special need. Anyone else have thoughts as to if we should be doing day care at all? What about a recommended diet? Do suppositories help?

    • Hi Luis,

      I totally understand your frustration.

      My boy is nearing four now and we’ve gone down the suppository route. To begin with it was a bit hit and miss, with accidents regularly however we’ve found it’s a process of trial and error. We are now at the point where he has half of a suppository in the morning, does a big bowel movement (still in a pullup over night) then after that, it’s into under pants and he’s generally fine for the rest of the day.

      My advice RE potty training is to not force the issue. The more you push your son to use the potty, the more he’s going to want to resist it. We got around this by placing the potty where our boy could see it and remind him that that’s where he goes when he needs to pee. Eventually the penny dropped and he’s now dry during the day. Try and make it a fun experience and remember that he’s a little different and it will take more time.

      I would really recommend day care as my son really blossomed when he started going. There’s no better way to learn toileting than to watch his peers – this is how they learn so it would be great for your son. Just make sure that the Day Care know exactly what his needs are, so that they are left with no doubt about his requirements.

      I hope you all find some alleviation soon – it’s hard and stressful but things will get better.

  5. Kinneth

    I just read about your blog miss lila, and I thank you for sharing your story,

    I also have a little 2 months boy who was diagnosed as imperforate anus, at the same time he is possitive on his newborn screening with congenital hypothyroidsm.

    I feel better knowing that there are lot of successful operation . Im also looking forward for your little boys successful operation.

  6. KB

    Does anyone have any information on bowel management for a child who was born with imperforate anus? My son is 10 and we are still having small (skid marks) daily. Any advice on bowel management, enemas, laxatives, or what works?

    • Hi KB,

      I can only speak from personal experience of managing my now four year old. We have the same problem with marks and discharge, however speaking to his paediatrician and surgeon we gather that there is not much we can do about it.

      For a while we were using suppositories to help clear his bowel in the morning and it worked fairly well, however after a year of using them he started bleeding and having more frequent accidents.

      Now with his surgeon’s advice he isn’t on any medication for his bowel management and generally has his own routine of going in the morning and evening most days. There are marks left quite frequently, but again there isn’t a lot we can do about it. What I do is pop a piece of nappy liner into his pants – you know the ones you can get for reusable nappies? These stop the marks from staining his pants and he can easily pop them in the loo when it needs changing.

  7. Jenn R

    It is comforting for me to come here and see the wonderful success of these beautiful babes born with this condition. My own special boy was born in November of 2012, and made his entrance at 35 weeks gestation. We still have no real reason as to why he came early, but it did cause his imperforate anus to be discovered immediately. We have run our rounds and watched his sister condition and he is running around like a normal one-year-old! I still worry about his scars and potty training in the future. Thank you for sharing your story so that someone like me can feel less alone!

    • Oh Jenn I am so glad that you found this post. If there’s anything that you should take away from this – it’s that you are definitely not alone. It certainly feels like it at the time but as you can see, there are a lot of us going through the same thing. I can’t promise that potty training will be easy – we’ve found it a challenging experience to put it lightly but stay strong and remember that there is help and support out there! You can always email me for a chat or to ask any questions. :) Thank you so much for visiting.

  8. Gracie

    I also have a daughter who was born with this condition …..it has been a roller coaster ride . First of all I thank God for giving her to me. God knows not just anyone is able to care for these little ones . Although our journey has been hard at times, I still believe He can’t give me something I can’t handle. So here I am , my daughter now a happy 7 yr old.my first couple of years were quite difficult.as a new mom, I was learning to be a mom and a nurse at the same time. after my daughters last surgery, she suffered with extreme bum rashes that was the worst part of all of this. The rashes didn’t start to subside until she started to potty train. My daughter is fully potty trained but continues to have occasional accidents I can’t prevent. Is till find myself using the rash cream sometimes. Like many other comments she states she “can’t feel it ” coming out. What I do is I control her diet. There are special things I have noted that make her go so I try to moderate that. It seems to help.

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