The Pyloric Stenosis story and my story (2) – some Negatives

In recent months I have researched and briefly chronicled a century of medical articles and reports about infant Pyloric Stenosis and many of its aspects.

The previous post mentioned some of the things I learnt and valued and which have benefitted me as I digested this material.  In this post I must mention some of the things I did not like.

1          No interest in counsel to parents

When new parents have to surrender a tiny recently born baby with pyloric stenosis (“PS”) to a hospital’s operating room team, it is by almost all of the many accounts we can read online the most difficult thing these parents have ever had to do.  No matter how kind the surgeon, reassuring the anesthetist and caring the sister in charge, most parents are traumatised to an extent that makes it unlikely they will be unaffected for life.  To take my mother as an example, she refused to talk about my sickness and although a very caring soul, she could not help me come to terms with my very clear discomfort.  Yet for the rest of her life she played with the word “pylorus” – every time sending a shaft of adrenalin through my system.

I’m quite sure my mum’s and my PS pain were not unique.

However, in all my years of searching and reading medical journals about the world of infant PS I have never ever come across even the briefest mention of this, let alone a recommendation that many parents of PS babies may benefit from some counsel on how to manage this trauma.

The reason I raise this as my first concern is that so many PS survivors who feel troubled enough by their experience to go online with it mention their own parents’ difficulties in helping them.  I consider this subject so significant that I’ll devote at least one post to it as I follow up my review of the years of discovery and improvement in the treatment of PS.

2          Little interest in long term (human & other) effects

Not unconnected with the previous censure, I found that in the available medical literature relatively little attention has been given to the later and often lifelong effects of PS surgery.  Interestingly and probably tellingly, there is a number of articles about the physical effects of PS such as on growth, mental development, or stomach function.  But the possible emotional and psych-somatic effects, although very occasionally listed in passing, are never dealt with or the subject of a research project.

Part of the reason for this and the previous observations may be that far from all PS survivors recognise and report physical and/or emotional difficulties which result or may have resulted from their infant surgery.  And true, this can be a complex matter to diagnose well.

When somebody grows up with self-image, self-confidence and/or PTSD challenges, there will always be at least several possible causes of that.  Who of us can escape the bumps and bruises of life?

I believe that –
(1)  there is no evidence that very serious (that is, life-threatening) personal problems result from the majority of routine infant surgery (like that for PS) for its survivors; and
(2)  there is compelling evidence that in a substantial number of those who have had infant surgery, especially in less recent time, there have been serious ongoing and life-affecting results from a short list of causes.

Again, I plan to write more about this soon (and have done so already).  Check out and watch this blogsite!

3          Disinterest in cosmesis

Not PS surgery - but careless surgeons are not confined to adult work or another country

Also not unconnected with the above, the medical journal articles related to PS have until recently shown scant regard for the cosmetic effect of the surgery.

Only a minority of ex-patients report concern over some of the long-term physical effects of their surgery, but many if not most of the PS people whose thoughts about their experience have gone onto the web have strong and negative feelings about their scar.  The majority of complaints are about their scar’s unnecessarily messy appearance and discomfort or pain caused by their scar.  And it must be recognised that some of the comments and images people have posted online show that a small number of surgeons who operate on babies do some pretty rough work.  In today’s world we have good reason to read: “abusive”.

I do not include in this assessment those whose weight gain has affected their scar J  There is nothing a pediatric surgeon can do to prevent an otherwise tidy job becoming buried in later years by a bulging belly.  As a pediatrican-uncle of mine said long ago:  Ieder pondtje gaat door ‘t mondje” – “Every pound goes through the mouth.”  Good cosmetic surgery can improve this damage.

Reports written in the earlier 20th century show a clear division between those surgeons who considered how their PS babies might feel about the look of their scar in years to come, and others who were expressively disdainful of considering this with the put-down line, “Be grateful!  I’m doing what I must do to save a life!”

4          Carelessness about alternatives, pain and infection

The last negative comment I make is that although there has been a century of steady improvement in infant surgery and the treatment of PS in particular, my reading has far too often come across signs of negligence with regard to recognised areas of discussion within the medical world.

I mention three very significant examples just briefly.  I have written about each of these in passing and will no doubt do so again, hopefully digging a little more deeply.

(1)  Medical or surgical treatment
Recognising that there are indeed many considerations, I remain troubled by the nature of the “PS treatment by medicine or surgery” issue.  Very briefly:  seeing many articles on each side of the debate have come to plausible and supportive but opposing conclusions, why does the medical world remain so polarised on the choice of treatment?  Why is medical treatment common in some Western and Northern European countries but almost unheard of in (e.g.) the U K and USA?  Am I too cynical when I ask if certain medical interests or traditions are responsible for the disparity?

(2)  Babies can suffer too
Like so many who have spoken and written about this, I am appalled that the medical world allowed infants to be operated on for so long without suitable pain management, accepting the unlikely mantra that “babies don’t feel or remember pain”.  And like so many online, I am angry that infant circumcision is still allowed as a routine procedure in some circles and that all-too-often still without pain management.

(3)  Infection control
It is also shameful that (as often reported in Great Britain and therefore almost certainly elsewhere as well) during the previous century infant surgery was allowed for so long in ways that showed hugely different survival rates.  For many years even after World War 2 PS surgery in British public hospitals came with mortality rates of up to 25% when other UK institutions and other countries reported less than 1% of PS babies dying after their operation.  Reports from the 1920s to 1960s stated that this disparity had two reasons: rich vs poor and careful medical staff vs those who paid little attention to the ever-present possibility of (cross-) infection.  But why was so little done to correct this chasm for so long?

Valid criticism and the need to know

This blog has I believe made some very significant and valid points of strong criticism about how PS in babies has been managed in the 100 years since Prof Dr Conrad Ramstedt discovered how this malady could be “fixed” quickly, safely, and with a much, much greater success rate than was ever possible earlier.  There have been many positives but also some clear negatives.  This is to state the evidence-based obvious, not to congratulate myself.

My aim has been to know and understand better how PS has been dealt with during the past century, to discover how the joys and pain of my story fit into the story of PS and of infant surgery, and to share as much as possible of this journey with those interested.

If you, the reader, would like to continue on this journey of discovery with me and others, and I hope get a bit more involved, do make a Comment, subscribe to this site, and / or contact me by email.  There may even be sufficient interest to discuss some of these matters on a subscribers’ forum.

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4 thoughts on “The Pyloric Stenosis story and my story (2) – some Negatives

  1. Mark

    Hear! Hear! Excellent post. I have often considered how I might counsel a sibling whose child was facing surgery, or how I might advocate for my own child facing “the knife”. You hit all the right points. Over the years I have fluctuated back and forth from incomprehension over my parents’ lack of concern over the possible complications over the surgery, and their attitude of “please, do anything you want, just save the baby”. Having now parented my own children, I am a bit more understanding, but still shake my head in wonder at how much they trusted a doctor to just fix the problem at hand, then assumed that was that, we can get on with our lives.

    Reply
    1. Fred Vanderbom Post author

      Thanks for those comments, Mark. This issue has affected us deeply.
      When my wife and I expected a new family member we would brace ourselves to perhaps have to deal with these possibilities. Sadly, so many parents face PS and its related consequences without preparation or counsel.

      Reply
  2. Frederick W. Thomson

    My mother (father subsequently died) told me very little about my May 1927 PS surgery, but she did say that I was on the verge of death, extremely dehydrated, unable to digest anything, and vomiting my food with such force that it literally flew across the room. It is clear to me that my mother was at her wits end; her only son was dying before her very eyes and his pain and extreme discomfort were obvious. She wanted to save my life and she did. I am grateful.
    My scar was and is ugly, but life is precious and I wear clothes. When asked at the swimming pool in my younger years, I always told the curious that I had suffered a bayonet wound in WWI. Most didn’t pursue the discussion.
    As far as I am concerned, both my parents and the doc made the right decision for 1927.

    Reply
    1. Fred Vanderbom Post author

      Wow, Frederick, you are the oldest person (by just 4 years) who has responded to my post: congratulations and I’m very grateful to you for your trouble. What you’ve mentioned is a powerful reminder of a lot that I have written about, and also that this condition and its surgical repair have affected many people over a long time now.
      I’m also thankful that whatever effect your surgery had, you have been able to live a long and I trust contented life. Good on you for working out a suitable tall story… I wish I’d had the confidence for that.
      I’m sure many of our readers would love to interview you to get some more details from you – please feel free to contact me (via the “About” tab) if you are willing to write a piece or answer some questions.
      In any case, I send my thanks and best wishes to a namesake PS buddy.

      Reply

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