Pyloric stenosis: a horror story

All surgery involves risk, but only the very desperate would sign for an operation they know has a high risk rating.  The operation to remedy infant pyloric stenosis (“PS” or “pye”) has been done worldwide for over a century now, with steadily falling mortality (death) and morbidity (complication) statistics.

Yet risks remain, and the only perils most doctors talk (and seem to know) about are the immediate ones.  The long-term hazards are in fact also quite common and unpleasant if the web forums and material I have collected on this blogsite are any indication.

This post is about a fairly recent botched PS operation in the UK.  The mother of a young lad now 4 years old shared her story on one of the Facebook “Pages” which lets PS parents and ex-patients share their experiences.  Here is her account, passed on with her consent…

SeatonHarlan age 4 Fb 140502-2Here is Harry [not his real name] aged 4 years.

He was a 29 week prem baby.  He came home at 8 weeks.  Vomiting started within the week.  (I literally didn’t dress for a week, went from one dressing gown another).

As a mum of 2 other prem babies and one plus term, I knew it wasn’t reflux.  However, I thought it could be milk.  We changed milk till blood tests revealed he was “deranged”.

A scan later revealed pye.

We were transferred to another hospital as he was oxygen dependent and 4 pounds, consent was signed and mum was reassured.  I questioned anaesthetic use on a tiny baby and was told “this operation is like pulling an adult’s tooth, it’s so easy”!

Surgery was the next day.  Post op bottle to be offered at 6 hours then he goes home.

Bottle declined, baby distressed.  This went on almost 36 hours.

Resulted in my boy arresting at the point of repair surgery.  He had e-coli poisoning, peritonitis, multi organ failure and any other complication that could happen did happen!

It transpired his duodenum had been cut and ignored.

We were told he had at the most 30 minutes and they could do no more.  He then developed abdominal compartment syndrome.

Harlan's belly will always tell the story of his fight for life.

Harry’s belly will always tell the story of his fight for life.

He however is a very stubborn boy: he showed them he was in charge!  He did require 7 lots of bowel repair surgery, and the 4th operation revealed his liver had been cut also!

He came home with a palm sized open wound that looked into his bowel.  New skin grew back!

I have cut out lots as I can’t word it appropriately!

Today he has brain “damage” and a killer scar.  But he is an amazing child.

*       *       *

On the basis of the mass of information available on the web I add these comments.

The duodenum is the section of the gastric passage that follows from the stomach and pylorus.

IHPS diagr25A perforated duodenum resulting from a PS operation is rare and will usually represent what we call “a botched job” although medical journals won’t describe it that way.

Competent surgeons know (a) how to avoid opening the duodenum, and (b) what to do when it happens.  A surgeon who cuts the duodenum and doesn’t discover this immediately was probably careless or incompetent and unprofessional.  And a hospital where this happens was most likely negligent in not enforcing its policy about the checks a team needs to complete to minimise surgical mistakes.

What should have happened is quite simple.

The Ramstedt PS operation involves splitting the baby’s enlarged pyloric muscle down to the mucosa (the inner lining of the food passage) so that the ring muscle’s spasming is stopped but the passage does not leak partly digested food.

PS surgery02If the slit in the muscle is not deep or long enough, the muscle will regrow and the procedure is ineffective and will have to be repeated.  If the split is too deep the mucosa is ruptured, and if it is too long the stomach and/or the duodenum at either end of the pyloric muscle ring are perforated.  Accidental cuts are stitched, and if necessary a patch is sewn over the cut.

PS surgery04Every pyloromyotomy operation follows a protocol which includes testing for bleeding and leaks.  Bleeding is sucked or dabbed away until its origin is clear.  Before the abdominal wound is closed, or in a laparoscopic operation before the trochars (tubes) are withdrawn, air is pumped into the gastric passage and the theatre team looks for bubbles that would indicate a break in the passage.

When a perforation is only discovered after the operation it is life-threatening because the leaking gastric material will have had some time to set off peritonitis in a small baby.

When a baby like Harry is saved it is usually only after a string of further complications and the result of very excellent nursing care!

Although horror stories like this one are rare, they add to the many other non-life threatening but still significant stories about the grief that PS surgery can cause in the infant years and/or through any or all of the stages of adult life.

One of the reasons for this blog is to share information about the hazards of PS surgery and to increase the awareness of the little known but widely and safely used alternative – medical treatment.

Harry’s mother added these notes 2 weeks after the above material was posted –

Only about 2 months ago we have had a full admission of 58 counts of negligence.  They really couldn’t not admit this as Harry’s hospital notes told their own tale.  His solicitor and barrister said only they had never dealt with such a catastrophic set if mistakes.  They can’t believe what Harry fought and won!
He will receive a substantial payment but it’s on hold to see what the future holds.  The nature of his brain injury could cause significant problems so we have to see what the next few years bring.  He has a golf ball size scar on his head as well from a pressure sore.  He’s had surgery on this scar 3 times as it spreads like wildfire.  As it will make no great difference we have been advised to leave it a few more years.  I don’t want him losing anymore hair and becoming subject to bullying.
He has other problems associated with all this and these are all under investigation.
I’ve been told there will be no action against particular staff members unless they are “repeat” offenders!  I can however take civil action against individuals if I choose to.  The surgeon was a locum and he is not there.  But the main problem wasn’t the accidental damage, it was what happened afterwards in respect of poor nursing care. 

3 thoughts on “Pyloric stenosis: a horror story

  1. Wendy

    So was a malpractice suit brought against this ‘surgeon’? “A Horror Story” is right. What that boy and his family have been through! An amazing story! Thank you for sharing it. When child is meant to live, wow, it’s amazing what strength can be mustered. I think all children have amazing strength and determination, but this Harry takes the prize!!

  2. Fred Vanderbom Post author

    Yes, the mother and several readers were struck by this baby’s toughness and resilience. However, although I have tried several times, I have not been able to get more details from Harry’s mother about whether and how this awful story was followed through. If I get any more details be assured I’ll report them here if it’s appropriate.


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