Has anyone's baby/child had a fistula repair?

[DONTPICKTHEMILKSPOTS]

Any experiences of this?
4 week old baby may need this. I hear adult horror stories of pain and nightmares so please no adult experiences

Bump

Try Facebook groups. They are usually very helpful and people with experience can reassure you

I've tried and failed already.
But thank you for trying to help me.

Another bump, one more tonight and I'll give up.

What kind of fistula? I run a charity for kids with bladder/bowel issues and ww May have some parents in our closed FB group whose children have had it done. I know we’ve a few that have had oesophageal fistulas.

Check out TOFs group.

I know you said you didn't want adult experiences, but...
I had my esophagus repaired at 1 day old. And besides the good old 'Tof cough' I've not really had any problems.
Because my esophagus is slightly narrow after repair, I have to be extra careful about chewing my food before swallowing it and things with 'skin' used to stick if I wasn't careful, like apples and sausages.

I've made it to 32 with no pains or nightmares.
Feel free to PM me, and I will attempt to answer questions from my perspective, or will ask my Mum about what it was like for her when I needed the op/any problems after etc

Yes, my son was born with a branchial fistula, he was operated on by a specialist at 8 months. He has had no ongoing problems and the scar is hardly visible. The thing for us was finding a specialist and not a general surgeon. Hope this helps, good luck and best wishes.

Sorry I should have been more specific.
It's an anal fistula. He appears to have had (still has) some kind of perianal abscess, I noticed it when he was a matter of days old.

The doctor said he might have a fistula [that caused it] and it might need repairing.

@southwest12 please could you PM me a link to your group? I would be so very grateful to speak to any other parent that has been through it.

It's just dawned on me why I've been unsuccessful in finding Facebook groups, prob set to very private due to the very nature of the issue!
I'm definitely not an internet weirdo just a genuine and concerned mother of a newborn.

He's on the waiting list for surgery.

Another bump in case anyone has experienced this with a baby.

Have they tried scanning? I’m not an expert, but one of mine had a perianal abscess that appeared within the first 2 weeks. It then kept appearing several times over the next 4 months and the plan was to swab and scan first and consider surgery if it was still coming and going a few months later. It then resolved spontaneously never to be seen again. Sorry if yours is different ...from your pp it seems like it may have been there constantly since birth?

That sounds identical! But they haven't mentioned scanning. They want to prove it to see where it goes and cut it open if it's a fistula.

He's 8 weeks and it's been there since he was 2-3 weeks old. It reduces to practically nothing and comes back again but it's never fully gone away.

*probe it. Not prove it

Has it gone now then? Mine has a scar still from it, which I was paranoid was the same thing coming back for a while, but he’s now over 2 and nothing since he was 4 or 5 months. They were reluctant to consider surgery unless they really had to. They figured he had an initial infection which seemed to go but just stayed dormant which is why it appeared a few times.

Sorry cross post. Has he had antibiotics? Have they swabbed the pus to see which antibiotics are needed?

Hi yes he had antibiotics, it was co amoxiclav which is quite broad spectrum. But they haven't swabbed it.
Perhaps I should call them and suggest that next week.

It's never fully finale away, it's reduced down to practically nothing but never for long. Less than a day, about 6 hours for example and then it will flare right up.
It leaks a little tiny bit of infection 70% of the time.

What you're saying is making me want to delay surgery a bit.

How was your baby's temperament? My baby is pissed of 90% of the time.
If he's awake he's crying or about to cry.

I'm not sure if it's his abscess that is causing this.

@Highwaycat

Mine was a screamer for the first 3 months but then it got better and the abscess appeared again after that, so for him I don’t think it was related. He didn’t ever have a temperature or seem unwell with it, and it didn’t seem painful. They were going to scan when the abscess was present, they said in such a small baby it may not be easy to see if there was a fistula, so it wouldn’t necessarily rule it out, but if they did see something they’d be happier about committing to surgery.

Yours seems to be much more present so probably needs intervention? I think the worry is that even if there isn’t a fistula they have to give the abscess a good clean out if it isn’t resolving by itself. If they don’t then the surrounding tissue could be damaged.

Thank you. I saw a doctor yesterday on the back of this thread and we swabbed it to see if we need different AB's and she suggested holding off from surgery to give him longer to let it heal which I'm going to do.

Thanks for your help, I appreciate it.

@Nubbled could you please recommend a specialist? My baby has what seems to be a branchial cleft cyst. Many thanks!

Sorry Pikachuka, my son is an adult now and I know his surgeon retired years ago. I hope all goes well for your baby

Hi, I know this is an old post but I am intrigued for the outcome as I am going through the same with my 4 week old boy. Did you require surgery ?