Calling any paediatricians/gastroenterologists - can you shed light on a retrospective diagnosis?

[Intestinequeen]

This is highly outing so have name changed!
My DPs have passed away so I can’t ask them, and I don’t really have close relatives left to ask.
I am trying to find out exactly what form of congenital intestinal abnormality i had so I can inform medical professionals and also for my own knowledge and in case there’s a genetic link in terms of my DCs having their own children (when I was pg they didn’t think there was an issue but research changes & they’re early 20s now).

What I know:
Was born without 2/3 of my small intestine (in v early 70s).
The ends were not joined up.
I had a lifesaving operation at 2 days’ old
i was in hospital for the first 6 months of life .
I had a 50/50 chance of survival.
I had to have special formula - I suspect tube fed at first, I had a lot of drips inserted.
They told my parents I’d be small/short -probably due to malabsorption - I’m only slightly shorter than average though albeit in a small frame. I’m a tad too tall for petite.
I couldn’t tolerate wheat until I was about 2 - I’d throw up (my mum mistakenly gave me wheat and I was ill for about 2 weeks so they told me).

Def not coeliac - had recent endoscopy for GORD. Probably not linked to the original issue.

Ive had a good Google and it’s some form of intestinal stenosis, possibly apple-peel as it fits, from the initial prognosis I had. If anyone professional thinks this is likely, I’d be v pleased to hear any theories.

it’s very annoying as my mum told me that my notes had been lost & they were going to write me up in the Lancet! I think I was about 8 when she told me and even then I was disappointed.

Surgery at 2 days old sounds most likely to be due to congenital malrotation or some kind of small bowel atresia I’d think (But I’m not a paeds specialist).

Any way you could see if the notes were ever found by the hospital?

I would have thought it was small bowel atresia

https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/small-bowel-atresia/

Thanks. I sort of worked that out - thry said it was v rare so am thinking it could’ve been apple peel version.
is there a way of seeing if notes were found - I’d love to see them?

I have a congenital malrotation and it doesn't sound like what you have!

Could anything be possibly picked up if you paid for a private scan now OP?

Thanks. I did manage to find that out, but there are few types. I also had a small bowel mri last year but there was no mention of minimal intestine present!

Your early childhood notes or copies of hospital notes will be with your GP. Even if you change surgery they will have them at your most recent one. I only know this as like you I was born with something that I wanted to know more about when I was 50. My GP went through all my notes and found the details.

I have had abdo scans and an mri in recent years due to gastro issues but no-one mentioned the lack of intestine!!

If they lost the notes would they be there - maybe it was the hospital notes they lost and not GP ones? I will ask at Reception next time I’m in the surgery.