Pyloric Stenosis and avoiding the knife (2) – the choice is for parents!

The photos I included in my previous post show something of the emotions new parents feel and of the trauma they almost always express when they write online about their child having surgery at a very young age to remedy pyloric stenosis (“PS”), a condition that is horrifying enough in itself.

When your baby is born with a condition (or develops it so early) that leads to surgery, it is very deeply distressing: one feels extremely helpless, disappointed, guilty and a failure.  I have explained and explored this a little in the previous post.

Sadly, it is a sign of our times that it is hardly known in our culture today that PS is a condition that can in most cases be brought under control over a month or so with some careful medication, patient coaching, and “a little TLC”.

writer-thumbThe reason this has been lost sight of by most doctors is that it’s hardly mentioned and then summarily dismissed in most training institutions and among surgeons.  And most baby health-books and websites don’t even mention that there is usually a choice of treatment that is responsible and effective.  All that most parents hear is something like: Surgery is the simple and effective solution to PS, or, The rolled-gold treatment for PS is a quick and easy surgery.

What doctors do not mention is how traumatic it is for parents to have to hand over their new (and often first) baby to be cut open – and that after their little one has been vomiting its life away with great violence and irresistibly, as always happens with PS.

What doctors also do not or hardly mention is that although the surgical procedure (pyloromyotomy) is indeed quick and simple (surgeons love it as “the most elegant surgery there is”),

  • every surgery has risks,
  • working on a tiny baby’s insides understandably carries even greater hazards, and
  • the greatest risks are not immediate (perforation, infection and other wound complications, and incomplete splitting of the muscle).

Pain01Almost never mentioned is the considerable risk of various possible long-term and stubborn long-term effects –

  • abdominal adhesions,
  • effects on the gastric workings, some just weird and some utterly troublesome, and
  • emotional trauma of the baby or the parents’ trauma affecting the child.

Judging by the web chatter, these three areas of possible ongoing effects are far more common than the short-term risks, and almost impossible to remedy – and for that reason usually dismissed or stonewalled by doctors.  Because they are so common and hard to diagnose accurately and treat, very little statistical research has been done on them: they are just swept under the carpet – patients are typically pushed away or passed on to a different specialist: a paediatrician, a gastroenterologist, a physician, a dietician, or even a psychologist!

In June 2012 I wrote about 10 things for parents to consider if they suspect their baby has PS and they would like to try to avoid surgery.

In very brief, the medical treatment option is effective for between 60 and 90% of infant PS cases (reports on studies differ) when the baby is older than 3 weeks.  If medical treatment does not seem to be working, the baby is always able to have surgery: there have been no reported deaths of babies that were first given medical treatment.

Baby knowing1The best news of all (it seems to me) is that parents who try medical treatment as their first option know they have done the best thing for their little one.  If this option does fail, they not only have a “Plan B” but also know they have done the very best they can – for their child and for themselves!

4 thoughts on “Pyloric Stenosis and avoiding the knife (2) – the choice is for parents!

  1. wendy williams

    Marvelous! What great information, especially the fact that “there have been no reported deaths of babies that were first given medical treatment.” I also love the bullet-pointed lists you presented. Very clear. Parents reading this post and the one previous are getting validation, advice, and critical information. This blog is such a great service to ps survivors and the parents of ps babies and to everyone who wishes to understand more deeply the ramifications of any early surgery.

  2. Fred Vanderbom Post author

    The selective and too-directive advice most doctors seem to give to parents of babies diagnosed with pyloric stenosis is something that troubles me greatly. The ill-informed unpreparedness of most parents for a time of enormous stress is also regrettable but usually very excusable. I do hope that the clear and I trust responsible information I seek to provide with my SIS posts will help reduce both these problems and help a growing number of very sick little children avoid unnecessary surgery.

      1. Fred Vanderbom Post author

        Thank you, Wendy. I do enjoy being a bit of a coach and umpire on this subject, and are sure you do also. The feedback says so much: let’s keep up the good work.

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