Hirschsprung: Positive stories please....

[SHHHH]

Well I have stayed away from mn since ds was born as when he was 3 days old he was admitted to our local childrens hospitals with symptoms that they related to hirschsprung's disease...

After a week he was allowed home and atm is doing well, gone from 9lb 13 birth weight to 11lb 4 and is eating and pooing really well.

Well finally a biopsy sample has been good enough (3rd attempt) and today we found out that its hirschsprung that he has.

I'm empty . Relieved that it is what they initially thought (honestly, things that were suggested insead don't bare thinking about)and that at last we now know why my little boy was so ill from birth BUT so sad that he now has to undergo an operation....

We are due to see the surgeon on fri and they plan to operate within a few weeks but I just wanted to see if anyone has any experience of it and is able to put me at ease.

PLEASE DON'T REPLY IF IT'S NEGATIVE AS ATM I REALLY COULDN'T COPE WITH SUCH INFO WHEN I AM DAYS OFF SEEING THE SURGEON AND UNABLE TO HAVE MY MIND PUT AT EASE IYKWIM.....

Anyone been through what we are going through with a good outcome..I did finally google it weeks ago after weeks of stopping myself and tbh i wish I hadn't..I scared myself. .

I just want to know that there is light at the end of all of this and that my son will know no different. He's only 4 weeks fgs and shouldn't have to go through this..I blame myself.....

i havent heard of this condition, but want to wish you lots of luck xx

thanks .

Our DS had major bowel surgery at 7 weeks. It's worse for you than it is for them. Honest. Apparently babies have no memory of pain when they are that little and are prescribed sufficient analgesia.

We consented for a colostomy but he didn't need one in the end, they did a 'pull-through' straight away.

DS is now nearly 2. Happy, healthy and without a care in the world. He does take some medicine for constipation but we just bung it in his milk. No problem.

Let me share with you something that a really lovely doctor said to me.

'His engine is fine, it's just his exhaust that needs a bit of attention'. Brilliant.

Take care and prepare for some dodgy sleepless nights in uncomfy hospital beds (take your own pillow). xxx

aww cp thats lovely iykwim...Thats what I need to hear.

You mentioned the colostomy bit..what this temporary..? Sorry just a bit dumb when it comes to that..Just thats stuff I have read on the internet and it slightly worried me...

Glad your ds is well, like you said, we are trying to remain positive and to think he won't remember this in years to come. The pull through bit..we remember it being mentioned when we first went into hospital but given the fact our heads were up our arse so to speak we don't remember much...is this done from down below or through the tummy..?????

Thats a good way of saying whats wrong btw!! I will remember that.

I know what you mean about the hospital sleeping..been there done that already . I did the day shifts and dh did the night shifts. Bless him, he never slept the whole time he was there..

btw its the anesthetic that worries me...don't like the idea of ds being put to sleep

Hi my ds also had major surgery on his bowel at 3wks old and as with cp he is now 2 and a half and doing extremely well. We also managed to avoid a colostomy bag and have also had some minor trouble with digestion (dairy and gluten both of whic are fine now) and constipation which was medically managed. It is extremely scary and so hard to get enough information without getting too much. In our case the medical teams went through all the worst case scenarios in order to prepare us if they happened and everytime he had a procedure done things were much more positive than first led to believe. We had a wonderful anethist and he went into depth about his experience and the whole procedure which was fantastic. I took lots of photos of hospital, machines, tummy before and after surgery etc and have created a little book to share when he starts to question about his scaring,

shhh - congratulations on the birth of your ds

I'm so sorry that you have these worries about him. I don't have hirschprungs but did have major bowel surgery at 4 months old (in the dark ages of the 60's). I'm here, doing fine, have had 3 kids and little in the way of further trouble.

My own dd has had surgery for her health problems (heart) and has many general anaesthetics. I'm sure your little boy will be fine. It isn't nice seeing them go to sleep admittedly, but the staff at the hospital will help you through - especially at a children's hospital. They are so good at looking after the whole family.

Morning Shhhhhh.

Should have said that DS was a happy healhy 3,4,5......month old too (had op at 7weeks). Thay heal really quickly, much quicker than adults. He was so much better after his bowel was sorted out.

I agree with yawning monster very much, they have to go through worst case scenarios just in case. As for your queries on colostomy/pull-through I don't think they realy know what needs doing till thay have had a look. DS came out of surgery a lot better than we expected.

Got a load more to say to make you feel better but ankle biter is biting my ankles.

The waiting is as always the worst and don't forget...his engine is fine x

thanks everyone for such lovely posts...Hopefully ds's surgery will not be as major as what your lo's surgery was and hopefully will be quite straight forward..also hope once done thats it iykwim..

Gosh you worry about getting pregnant, worry once pregnant and worry even more once here.

TBH I think my problem is that I blame myslef and that for some reason its my fault as I made him iykwim and also worry about him..

Don't go there with the guilt stuff shhh. It's not worth it. Of all my 3 pgs I was the most careful with the last one and she's the one with health problems. These things truly do 'just happen'.

Takre care.

Course you worry, you are a mum. Not sure if this is your first baby but if it is then you have this to worry about PLUS not knowing what the right thing to do is about EVERYTHING else.

Like my son's condition, Hirshsprungs is NOT your fault, it is a genetic glitch. Nothing you (or DH did). Rather like cleft lip, hole in heart, squint etc etc etc, it is just bloody bad luck. That said I don't know any baby that doesn't have some sort of anomaly. Excema, asthma etc .

All you can do is cross your fingers and hope that if your baby is born with something wrong that it's easily fixed or managed.

At some point you and your husband will be saying. "God, I'm glad that's sorted and it could have been a lot worse". But there is no escaping the here and now is horrible and you just have to pull together and get on with it. x

My niece has hirschsprungs disease.

When she was born, she didn't pass muconium (sp?), didn't feed, and was coughing up mucous. She was transferred to another hospital and the doctors told my sister that the problem could be one of 3 illnesses, and hirschsprungs was one of them. A week later she had the diagnosis.

She had to have a colostomy bag but only for about 6 months, she then had the reversal. Other than constipation now and again, she is a really happy, intelligent, healthy, 4 year old.

Thanks sagarmaker and cp, I suppose feeling guilt is part of being a mum but because I hear the word genetic and along with the fact ds was inside me for 9 months I find it hard not to put fault or blame on myself...
DS is my 2nd so you would think I would have been use to all the worry following dd but it doesn't work like that I suppose..!!!

I do hope we look back on this time in years to come or even months later and breath a sigh of relief.
It is sespecially awful being in a childrens hospital and seeing other very sick babies and children . Its then that you realise what wonderful jobs doctors and nurses etc do.

BB thanks for sharing that with me,so I take it a colostomy bag is fitted while awaiting the op...??? So I guess because ds is going to the toilet himself is a goodish sign and prob means he won't need one fitted..? Like you said about the muconium, ds did pass a little 30 min after birth and more 2 days later but that was it, he also was very mucusy (see my birth annoucement) but annoyingly (now, looking back) it was passed off as being normal following the birth, along with the fact he wasn't feeding I wish something had been picked up sooner but then again suppose nothing more could have been done than was done at 3 days old iykwim. Part of me wishes that the mw and paediatritian weren't so quick to pass him off as a big baby (9lb 13oz) who was mucusy .It sounds like your sister was in exactly the same boat as us esp with having a possibility of 3 causes...............god our life has been on hold for the last 5 weeks and tbh following the 1st day ds was admitted it was thought I was awaiting a life sentance. Thankgod the consultants/surgeons we have seen at the childrens hospital has been very sensitive to us and very reasurrin but then there is only so much they can say when its your child.
Can I ask, how was the op done bb.? Through the bottom or tummy button..?? Did they feed her anything special, I ask as atm ds is having problems with his feeds and seems to have excess wind, not sure if this is because he's a baby or due to HS..? atm he is on omneo which is meant to be easier on his tummy..

xx

sorry no personal experience of hirschsprungs but seem to remember seeing the actress denise welch (coronation st, that prog set in a school, loose women) talking about her ds2 being born with only a few years back, and that he'd made a recovery after treatment etc.

hk, thanks for that..didn't know that at all..! Just googled it and managed to read a bit about her experience.

Anyone else able to offer supportive advice..? Thanks so far for the help xx

SHHH - My sister was expressing her breast milk and feeding her that, but by recommendation, she switched to formula milk, (SMA Gold).

she had the op through her tummy.

I can honestly say, my sister's little girl is so advanced for her age (all her teachers have said), she was toilet trained by the age of 3, my sister's consultant told her she might be slow with her toilet training, but she was no slower than my DD who is exactly the same age.

I am not going to pretend what my sister went through was easy, because it wasn't, but the main thing is, your little one will be absolutely fine. I am no expert, but from what you have said about your little one, it doen't sound as if he has hirschsprungs that bad. My sister was told my niece had a very bad case of hirschsprungs.

I wish you the best. I am sure everything will be fine.

Oh SHHHH I empathise with you entirely. The docs thought my ds had hirschsprungs when he was born, but he doesnt. but he did have major bowel surgery at a few days old and has had ops since. (My other DS has also had a number of ops too)

Our experiences will be different - but linked by a common theme. If it would help to talk to someone, either on here, or via msn or email then do please Cget in touch or CAT me. I know how hard this is. I can be here to listen and support you. I recognise so much of what you have said. {{{{{{HUGS}}}}

thanks bb....well the consultants we saw suggested we wtick to one type of milk...atm im expressing (around 4 oz a day) which I find hard with a lo to run around after as well and as I didn't have to good a start iykwim I struggle to find him solely myself. . So wish I could, like I did with dd.
So im trying to convince myself and to resign myself to the fact that i will no longer have the choice of bf and even to offer it to him for comfort. Upsets me greatly. .

He's on omneo but today I bought sma lf as not sure if he's lactose intollerant as this can be the case with hs babies..he struggles with 80% of his feeds, in that he's restless,fights the feed but wants it iykwim and seems to have wind BUT not sure if its the formula not agreeing with him. Tried infacol...not great improvement and tried colief today...seemed worse. Will speak to surgeon tomorrow for advice as tbh we have been left alone with regards to the feeds. Need more advice.
Hrad to say if he's like this as he's a baby or if due to hs..????

Losty, thanks for the offer and will prob take you up on it..want to get more info tonmorrow from surgeon and will shout if I need a chat...may even need the support nearer the time of the op. MN is great for such good help and advice. Thanks everyone. x

oh SHHH you poor thing. I cannot offer mch advice re feeds I am afraid. My DS was on TPN for a few weeks and I meanwhole expressed a tiny amount. but he w3as my first so I had more time.

DS2 had lots of feeding probs but for differnet reasons. So I empathise again. (He turned out to have GORD btw)

I think ytou need advice from his surgeon tomorrow.

Where int he country are you btw?

Regarding feeds, ds developed cows milk protein allergy. I persisted with expressing and trying to feed him as we were told that he would only manage the very hyper allergenic formula if any at all and food just was so un enjoyable for him we stuck with the breast but it was extremely hard going. I ended up small and often as that was the only way he could manage...every 2 hours and then that was a stretch, he struggled and fussed and so forth also and had wind. We didnt find any of the infacol gripe water etc were helpful but did massage ds tummy in a clockwise rotation after feeds as specialist told us this may help to externally assist food to move through the damaged parts of his bowel.

thanks for that yawning...

forgot to say,prob with bf mainly due to him struggeling to feed`at birth which we now know due to hs and also due to being in hospital as stops with dh done in shifts..

losty im northwest btw..and you ?

london shhh

poor you re the bf its bl%%dy hard isnbt it

ah right. yes the bf is hard....i persevered with dd and was so proud when i managed 6 months and `stopped mainly because dd was a fidget and never seemed full, so wanted the same start for ds but obviously not to be... its put me on a guilt trip tbh as I feel maybe I didn't try hard enough or maybe I could have persevered...

how's things shhh?