The possible effects of infant pyloric stenosis

Doctor01The most common mistake and the biggest lie told about infant pyloric stenosis (“PS”) and the surgery to remedy it are the simplistic notion that neither has after-effects:  “After the quick little operation you’ll have a new baby, and you and your child will never think about PS again!”

Sadly, that mantra is all-too-often “too good to be true”.  All-too-often it just adds disappointment, insult and feelings of betrayal to the nightmare: of many parents in the weeks, months and often years after their child’s surgery, and of survivors every time they are told that their chronic troubles cannot be explained but have nothing to do with the scar on their belly.

The prevalence of this rather too promising assurance is why in 2012 I devoted a lengthy post about this on this blogsite.  It has been the 2nd most read post on this site.  I will revisit this subject more briefly here, and urge interested readers to use the link to read what I wrote there, and to use the Categories and Search/Tags boxes at the upper left of this page to find related material.

Because PS is relatively common (between one and five babies in 1,000 will suffer with it in developed countries – that is a lot of people!), we must conclude that the widespread belief about there being no ongoing or side effects although false and misleading is nevertheless generally true. I suspect that if (say) half the millions of PS survivors had troublesome adhesions, obvious PTSD or chronic reflux, we would know about it.

It is also true that some of the reported ongoing effects of PS and the surgery to deal with it cannot be linked with the condition with any certainty.

Obesity02For example, obesity or minimal body mass in later life are common complaints among survivors and could indeed be the result of the pylorus’ being slit and behaving somewhat differently – and some small studies have recognised this.  Yet from my self-knowledge and interaction with others affected it seems to me that our genes and eating choices are mainly responsible for how we process our food intake.  As an uncle used to tell my parents, “Every pound passes through the mouth”.

The vexed matter of GERD, GORD, or reflux is another common complaint that is often suspect but hard to pin on PS or its surgery.  I have written about the challenge that chronic abdominal pain is for many people: patients, parents, and physicians.  Long-ago abdominal surgery is all-too-often on the list of suspects for persistent undiagnosed pain, but a PS link is far from always established, although this may be because so many busy doctors fail to “engage” with patients who consult them about a list of hard-to-diagnose abdominal complaints.  If a quick prescription or a referral to a surgeon will help you, fine, but otherwise…

Having noted all this, it is sad but true that PS and its operation cause much, much more grief than the medical world seems willing or able to recognize, if the thousands of medical articles and personal stories available online are considered.  Again: the problems listed below will not affect everyone after PS and surgery for it, but they affect many.

Here is an incomplete and dot-point list; it summarises many other posts to this blogsite.

Some immediate and ongoing after-effects of PS (regardless of surgery)

  • Malnutrition of the brain (incl. lasting effects on memory, coordination and motor development)
  • Hernia formation
  • Risk of children inheriting PS
  • Increased risk of later gastric ulcers

Some effects of medical or “watch and wait” treatment of mild PS

  • Need for surgical treatment in infancy or later life

Some immediate after-effects of Pyloromyotomy (PS surgery)

  • Complications of surgery – a list incl. breach of the pyloric passage, incomplete pyloromyotomy, infection, bleeding, wound rupture, anesthetic problems, hernia formation
  • Disturbance of gastric function (continued although milder vomiting, GERD/reflux, slower or faster processing)
  • Emotional effects of surgical trauma and maternal separation

Some long-term after-effects of Pyloromyotomy

  • Disturbance of gastric function (abnormal vomiting, GERD/reflux, irritable bowel syndrome, slower or faster processing)
  • Abdominal adhesions
  • Post Traumatic Stress Disorder – various results of retained somatic (body) memories and transfer of parental trauma
  • Significant discomfort for women during pregnancy
  • Scar disfigurement – self-image
a PS baby showing malnourishment

a PS baby showing malnourishment

Against all the above possible causes of PS puzzles and problems, ranging from minor irritants to significant and life-affecting afflictions (all-too-often dismissed by the family doctor), we must remember one thing.  Whereas PS a century ago meant the terrible death of almost every affected baby, today it is a negligible cause of infant mortality, thanks to the steady progress of Western medical science during the past 125 or so years, when Dr Harold Hirschsprung first described PS in detail.

This blogsite is committed to seeing a better integration of the science and the humanity of managing PS.  In several areas there remains some room for improvement.

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3 thoughts on “The possible effects of infant pyloric stenosis

  1. Wendy

    It’s great to see these after-effects in neat, clear lists. Amazing that all these were swept under the rug in the past, and probably still are in many places. The pediatrician who kept checking me year after year post-pyloromyotomy told my mother that I could have a problem when I hit fifty. He didn’t say what type of problem. At one year old, I remember him telling my mother because it totally freaked me out, even though I didn’t know what fifty meant. Then the doctor kind of pooh-poohed what he’d said: “But we’ll keep checking, of course.” And my mother didn’t probe further at that time. I do wish he would have answered my mother’s question where I could not hear because it created a SUPER amount of anxiety then and all the years of my life. I wonder what he would have said if my mother had pressed him. In any case, no physical problems yet. The worry the doctor caused me is part of my post-traumatic stress disorder 😦

    Reply
  2. Fred Vanderbom Post author

    Thank you for your Comment and experience, Wendy. If only we could take back some of our throwaway lines with the benefit of hindsight! It underlines for me how important it is (1) that doctors be knowledgeable and open (but also careful) with their patients (and in this case, their parents); (2) that doctors take time to explain any warnings considered necessary clearly and fully; (3) that parents, especially today when so much information is freely available, inform themselves and take care telling their children what they need to know; and (4) that survivors (like us) also use the means available to us to educate ourselves and try to lay to rest matters like the bogey you carried for so long.
    While there are so many things that can go wrong, each one of us thankfully suffers only a part of this. You and I can be grateful that adhesions and reflux haven’t bothered us.

    Reply

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