Are Pyloric Stenosis problems history yet?

In my previous post I explored the horrible old mantra that “babies have no brain and therefore will not feel or remember pain”.

When I was just 10 days old I had my first surgical operation, for a pyloric stenosis (“PS”, a blockage at the stomach’s outlet) which occurs fairly commonly in between 2 and 5 baby boys and about one girl in every 1,000.  In 1945 (and for several decades after this) the trauma easily caused by what is today regarded as simple surgery was not understood –

  • the operation was often done without a general anesthetic, sometimes even without local pain control because of the major hazards and possible side-effects of each;
  • hospital stays after such an operation were routinely 2 weeks;
  • in hospital sick and recovering babies were routinely separated from their mother to reduce the danger of infection and they were fed on bottled milk;
  • the effects of these practices on the infant’s parents were usually discounted and masked by a code of silence, which often made them even more toxic in the long-term on parent and patient.
  • What I have outlined here has had a lifelong effect on me, and most likely also my parents, although they maintained their silence to their deaths many years ago.

Nerdy MD2One effect of this on me has been a lifelong and obsessive interest in PS and infant surgery.  In recent years what I have learnt and continue to learn has been channelled into teaching and advocacy for the a list of “issues” around these two subjects –

  • What is PS and how was it treated yesterday and is it treated today?
  • Can surgery for infant PS be avoided?
  • How can PS and its surgery affect the infant’s parents?
  • How can they affect the patient in the immediate and long-term?
  • Why is the diagnosis of PS often so frustratingly delayed and what can be done about this?
  • How can parents deal with the problems babies frequently have after the operation?
  • How can PS survivors deal with some remarkably similar problems that all-too-often arise in adult life?
  • Do babies feel and remember pain and other trauma of their pre-verbal stage of life?
  • What are the symptoms of PTSD that seem linked to early infant surgery, and what therapies and programs are available to those affected?
  • Since gaining access to the internet in 1997, I have learnt much about all the “issues” listed, from websites, blogs, social forums, and some valuable personal interactions and friendships that have resulted.

In 2015 I plan to continue sharing and interacting with the PS community via this blog, as well as on several social forums, notably the various Facebook Groups committed to offering support, sharing information and raising awareness about PS.

SeatonHarlan age 4 Fb 140502-2PS survivors and their parents on Facebook sometimes express their profound gratitude that some of the issues I have listed above are now largely becoming consigned to the historical record.

Greatly improved support for parents, good pain management, new surgical techniques that much reduce disfigurement, and short hospital stays are now standard.  Parents may also remark that there seems to be a slowly growing change in the medical professions’ awareness of PS and their attitude to PS parents: less professional paternalism, arrogance and conceit.  Changing social attitudes and better education in medical school seems to be germane to this.

However, it is also quite clear that we are far from being able to “move on” and go fishing!

4 thoughts on “Are Pyloric Stenosis problems history yet?

  1. Wendy

    I applaud you for sharing your story with PS parents and helping them gain knowledge and perspective. I’m sure your voice has relieved some of the stress of many of these parents dealing with the difficult task of getting the right care for a sick infant. And you have helped so many adult survivors of PS understand pain that many doctors won’t or can’t understand. Your advocacy work deserves an award to my mind. I’m so glad you will continue this work in 2015. When I read of your dedication to continue, a little smile formed on my lips. A smile of YES, I knew it and a feeling of gratefulness. Your list of questions above (in your post) is very powerful and I, for one, am thankful for your inquiry and your perseverance. The list of the trauma caused by the early pyloric stenosis operation, which we experienced, serves as a powerful reminder of the difficulties we survived. In a way, I felt proud after reading it, for we were pioneers of a sort. And as pioneers, we suffered many hardships, many of which are only now coming to light and being understood. I would never have wished this experience upon us and others, for many of us are still dealing with the emotional aftermath. That we can serve others is an antidote. Best wishes for continued success with your advocacy work!

    1. Fred Vanderbom Post author

      Thank you Wendy, for your warm appreciation and wholehearted support: these mean so much to me and have done so for quite some years now!
      At the end of another year of blogging and other advocacy, I once again want to thank you for your friendship and close and faithful partnership in what is in several ways a lonely and frustrating task.
      The number of pyloric stenosis survivors worldwide is huge, but only a very small percentage show interest in sharing their story, offering help to others, and advocacy for greater awareness and better management of the several significant issues involved. The comments on your and my blogsites paint this picture very clearly, although forum sites like those on Facebook remind me that there are any more concerned survivors than those who respond to our blog-writing.
      Getting through to the medical establishment is far more difficult still, but over the years we have had very valuable support of various kinds from a very small number of doctors, and I am so very grateful to them. It seems to me that most doctors choose not to listen to “lay mortals” like us (whether “survivors” or their parents), and that the medical “empire” can only be adequately reached by what we and others are doing (mostly online) to educate parents and PS survivors who become parents.
      I am pleased that you and I have each developed our knowledge and writing in slightly different directions while staying well in touch and support of each other. This is sensible: it broadens our expertise, audience and coverage of the past and present issues around PS and other infant surgery.
      Bring on another year of this very worthwhile endeavour! I keep being told that it is greatly valued, albeit by a small but hardy community.

      1. Fred Vanderbom Post author

        Thank you Wendy! It means so much to both of us to have each other’s support and sharing in this exploration and public advocacy of the possible serious long-term effects of infant PS, especially as we have experienced and learnt about that. Keep up your great work!

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