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anorectal malformation/anal atresia

jraustinrdhjraustinrdh
in Special Needs
Any Moms have a child who had congenital anorectal malformation and ARM surgery? Would love to discuss things. My son was born in December. It was a mild case that only needed one surgery and no colostomy. He had a fistula present at birth also. Ive only heard of moderate to severe cases and who love to talk to someone who had a mild case...or any case and what to expect. :
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Re: anorectal malformation/anal atresia

  • blueonblackblueonblack member
    Hi, there.  My daughter had an imperforate anus at birth.   I believe this is the same thing as anal atresia.  She had a fistula as well---the nurse who cleaned her up after birth didn't even notice it because the fistula was placed so close to where the anus should have been.  She had the repair surgery at five weeks old.  How are things going?
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  • jraustinrdhjraustinrdh
    Yes its the same. How mild or severe was hers? He had his at 3 weeks. The hospital I was at didn't find it for 24 hours. His fistula was already starting to fill up with meconium. My lactation consultant is who found his, only because I was worried that he hadnt had a BM after nursing really well. I was worried hed be jaundice, never knowing that would be the least of our worries. He went straight to the NICU and they actually found a small opening and were able to dialate him and get stool out. What was your experience like. What was her surgery like? Do you do dilitations at home? We have to. Our Dr is 90 mins away and we go monthly. Did they talk to you about future issues? How old is she now? Sorry for all the questions but its nice to chat with someone whos had a similar experience.
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  • jraustinrdhjraustinrdh
    It's so nice to hear from other Mom's who have a similar situation! How old is your son now? I will be so glad when we don't have to dialate. We are at a 14mm dialator right now and I feel so bad when I have to use it! :( I have so many anxieties about post surgical care, as far as what's going to happen in the future. His was a semi-mild case (as far as I know), but the Doctor talks about how he might have problems with constipation in the future. That makes me so nervous. I have just started trying rice cereals because he has been getting up up to 5 times in the middle of the night and I'm losing LOTS of sleep. If I didn't have to work, I wouldn't mind it so much. Anyway, when did they find the prolapse complication? Did he have symptoms? What is that exactly? Did your son have the sphincter muscle? I'm so nervous about giving him foods, even baby foods, and about toilet training. What age did you start giving him probiotics? I am nursing him and take probiotics myself, hoping he will get some. If you can't tell, and if I haven't said it before, I am so nervous about all of this! Thank you for any information you can give me!
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  • blueonblackblueonblack member
    I've had a crazy week and haven't been on here to see you answered!  No one ever told us "mild" or "severe" but I think she must have been on the mild side? She is ten months old and we do dilate although I think it is coming to an end next month (have to check my papers!).  We are down to dilating once a month at this point.  The nurse practitioner for our surgeon said she thinks our DD will potty train just fine and if there is a problem it will be solved with a daily laxative or enema.  Surgery recovery for us went well but it was rough emotionally.  Lots of crying (from me and her both) and she was very uncomfortable but after the initial two weeks it was better and then not too long after that it was fine.  My daughter has other genetic issues so we had/have a lot of other stuff going on as well.  At this point I just hope for the best as far as normal bowel control later. 
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  • teniellesmitteniellesmit

    Hi Ladies,i came accross this and thought you would like to know my situation

    My son was born with anorectal malformation,he had his first surgery at just 1 day old to open up the anus,he had a membrane covering the opening and he had a fistula,he had a colostomy done and had it reversed at 6 months old.

    he was dialated for those 6 months( which we did at home),we got up to a 15mm rod,it was heartbreaking for myself and for him.

    he is now 3 and a half years old and he is such a healthy handsome young boy.

    The only problem now is that his sphincture muscle is very week which causes him to smudge alot,he is fully potty trained.other than the smudginf every day.we do have occasional problems with constipation if he has alot of sweeties and junky food so we do try stick to a high fibre and fruit diet,thank goodness he loves fruit.

    i am currently searching for info regarding a bowel managment programme to help him stay regular with the help of enemas and laxatives and to strengthen his sphincture muscle,the problem is that i am in southafrica and there is nothing like that here.

    i have found a place called cincinnati in ohio that deal with kids like him to get him into a bowel managment programme,i am willing to fly there to get help.

    if anyone has these problems with their little one,please let me know.otherwise i hope my info will do you well.

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