Hey I must have missed your last post dated 11/8!  Sorry. 

That's good news that it's not HD - my cousins DD was born premature and didn't pass meconium for 5 days either - they tested for Hirschpsrungs because our DS has it but it turned out to be just a combination of being premature and constipation - which although they will tell you is not particularly common in BF babies but it does happen.  Just keep a close eye on your lo and I'm sure she will be fine. xx

Hey!  How's little one doing?  My DS is 3yrs old now and was diagnosed with short segment Hirschsprungs Disease at 6 weeks old.  He didn't pass meconium at birth, well not until day 2 or 3 when they gave him a stomach and bowel washout and a suppositry.  He then did it and continued to poo (I also BF) until he was 2 weeks old and then he didn't poo for a whole weekend.  He eventually passed something on the Monday but I noticed that his stomach became very swollen and I took him to the GP to then be sent straight to the hospital.  They took X-rays and saw that he was completely full up with wind and poo.  It turned out that the poo we'd been getting in his nappies was overspill where he was so full up it just had nowhere else to go.  We were transferred to a larger hospital in the next city as they have a better equipt childrens department that day and spent a week as inpatients whilst he underwent tests.  He had 2 suction biopsys during that week, then we had to go back and have one done under a General Anaesthetic when he was 5 weeks old due to not enough tissue being taken to give an adequate result.  This last biopsy provided a decent result that confirmed he had Hirschsprungs.  Whilst we waited for these results he had bowel washouts (colonic irrigation) every day and continued to do so until he had bowel surgery at 3 months old.  They tried to teach me to do this at home but it was a really harrowing experience and after a Community Nurse came to the house to do it and ended up drawing blood from my sons bowel I decided I'd rather take him to the local hospital every day for it to be done which they agreed to.  The Community Team in our area had no experience of Hirschsprungs due to its rareity.

Like other posters have said it is more common in boys and even more common in children with Downs Syndrome, but although it is known as being hereditory - neither myself or my husband or any of our families have this condition so we were just one of those freak occurances and our son was just unlucky.

Like I said before he is 3yrs old now and is doing brilliantly.  He is on movicol every day to keep things moving nicely and without this he does suffer with severe constipation - but he was fully potty trained at 2yrs 7 months - even though we were told not to expect him to be trained until he was 4 or 5yrs and he's never been in hospital since apart from for his 6 monthly check up. 

If you want to chat please feel free to pm me too.

xxx

Annie went in for a general anasthetic last week. The doctors chesked the size and position of Annie's anus and said it was all fine. They took a biopsy in the end and the secretary phoned me last week with the results to say that all though what they founf was normal, the pathologist said that the sample was not big enough! I am very annoyed to say the least. The registrar then phoned me today to give me the results and said that everything was normal. I explained that the secretary had already phoned and she said that the [pathologist said that the sample wasn't big enough. He questioned who had told me that and said well it was normal, it is not hirschprungs, just constipation which you must treat with laxatives. I asked if it was normal for 100% bf babies to be constipated and he said yes, he sees it all the time??!! So they haven;t really done anything except look at the position and size of her anus and decide she is completely fine. I am not really very happy with that. Am I being an over protective mother?

Hi! Thank you for your replies. We've just got back from holiday so not been on for a while. Went to see the consultant last Monday as they rang on the Thursday and asked if we could go. They are taking her in this Thursday to investigate under a general anasthetic. Not sure why  as I was so shocked I just said ok then!! They didn't explain what they were going to do either. Have phoned since and they said they would get a doctor to call and explain but not heard anything yet. I am a little worried. They did say she has an anterior anus. I mentioned that her neonatal consultant was concerned that her not passing her meconium within 48 hours might be significant to which he replied I don't think it's anything to do with the nerve cells but we might think about doing a biopsy whilst she's under. I am now questioning my faith in the doctor amd not sure what to do. I think I have read somewhere that Sheffield is a specialist centre for gastrointestinal problems but I'm not sure if it's something we can access or need to access or if we should??

I 1st it always seems wierd when i see hirschsprungs mentioned here so i always check...

My son had it he is mearly 12yrs old now, he was born with it, it is a rare genetic disease where the ganglion nerves in the the bowel dont form both parnets have to be a carrier of it and it is more common in boys than girls......

Mine is different as my ds passed his 1st meconium dont think it was straight awayt hough but was within a day,

I think that the fact i bf him eased his problem, as when he was 12wks old and stopped putting weight on ( known problem with the disease) i gave a top up of ff then i weaned early to help with his weight then constipation set in.

HV went through givin pureed pear extra fibre, then he was put on laxitives, then at 6 months he had nurses coming out to give enemas.

It wasn't till he was 3yrs old after alot of messing about with his bum and 3 biopsies that they diagnosed him with it and he was given a colostomy bag straight away, 6 months later he had a pullthrough op where the affected part of bowel was cut out, then 3 months later his stoma was put back.

Personally if he was a baby when this was found then he might of recovered faster, because he was still in nite time nappies till the age of 6/7 yrs.... and now at 11yrs he still gets alot of pain...

He is going back to hospital in 2wks so they can do another biopsy and to check that the nerves where thye joined the bowel are still there.....

I hope everything is ok with your baby, but there is a lot of support out there for this illness if she has it, i'll say it isn't plain sailing but we get through it.

Hi ya, I have 2 nephews that both have hirsprung's disease, one with a full colostomy bag and the other with an illeostomy that was reversed. Just to let you know that it is a hereditary condition and is also very rare in girls just to give you a bit of hope. I hope your lo is ok and that the wait is not too long for you. If you want to pm me, I will also answer what I can, my ds went on the 3 rd day after birth and he is fine in that department. xxxx

Thank you for your replys. Sal I am about to pm you- thank you. I was wondering if the fact that she hadn't passed meconium until day 4 or 5 means there is pretty much def something wrong or if it could be a chance that it's just one of those things and everything is fine. Has anyone's lo not passed meconium and then everything turned out fine?

Hiya, my ds doesn't have this problem but just to answer your question he was born in the morning and had his first poo late afternoon/early evening so yes 4 to 5 days does seem quite a long time. I hope it gets sorted hun, I'm sure your lo will be fine x

Hi, my ds is 10 months and was full term. He didn't pass meconium and was diagnosed total colonic hirschsprungs, 3 surgerys later he is doing okay. If you want to chat feel free to PM me. xxx

Hi. Do any of you remember when your lo had their first bowel movement?

My little girl has been referred to the surgeon as she is having problems with constipation. She also didn't pass her meconium plug until day 4 or 5. She was ventilated and premature so just wondered how significant the delay is given these circumstances as opposed to being full term and healthy. They are testing her for hirschprung's disease amongst other things. It could be that there is nothing wrong and it just her normal bowel habits. She is also suffering from quite badly from reflux so it seems to be her whole gastrointestinal tract playing up. Is anyone elses lo having similar problems?