Pyloric stenosis history and my story (1)

During the past few months I have thoroughly enjoyed learning and writing about and passing on some of the history of treating pyloric stenosis (PS), the condition that 100 years ago used to starve to death the great majority of babies afflicted by it.  Today the deathrate among PS infants in most countries is (or should be) minimal: well under 1%.

What have I learnt and how have I benefitted?

1                    I was heartened by the continuous improvement with new treatment techniques and new drugs.
I have been able to trace and inwardly celebrate these advances.  100 years ago, medical treatment (albeit crude) was strongly preferred to surgery; the surgical techniques were terribly harsh on a weakened infant and rarely successful.  Today the medical treatment avenue has benefitted from better versions of the basically same drugs, it is usually quite responsible and successful, and the medical world should be much more aware of what can and cannot be done by the medical management of PS.
In many developed countries the health industry has become so sophisticated and costly that for mainly cost/benefit reasons, most pediatricians will send almost all recognised PS babies straight to a surgeon; the medical treatment route is simply and sadly even more expensive.
The improvement of the surgical option has often been held back by surgeons being bogged down in their training and habits, but over a century the progress is still very obvious: I have posted a considerable number of scar illustrations to make this clear.
With the ageing and passing of two or three generations, scars from PS and several other kinds of surgery should become far less obvious.

2                    I now understand much of what my traumatised parents did or could not explain to me.
Like I imagine many of us, I could not bear to go through life with a foreign, obvious and ugly scar and not know what caused it.  Even as a child I already wanted to know what physically happened to make such marks on my body.
My parents (like many, I have discovered, and quite understandably so) could never bring themselves to answer my questions, let alone take the initiative in raising the subject.  I also realise that with the advent of the internet, I can answer my childhood and later questions so much better than they could ever have done.
On this blogsite I have appealed to parents of scarred children to talk.  But I also increasingly realise how hard many parents find this.  I plan to devote a blog to this area soon.

3                    I now understand the essence of some of the issues that divided the pediatric and pediatric surgery community over the past century.
Why did so many surgeons refuse to give babies pain relief, let alone local or general anesthesia?
Why did those who recognised that babies are affected by pain divide over whether to use local or general anesthetic?
Why wasn’t I treated with medicine as many were over this century?
When both avenues of treatment (medicine and surgery) were respected, why were some babies treated with medicine and others sent to the surgeon?
Why were (and are) some babies intubated awake while the majority are “put to sleep” before a tube is inserted into their airway, a terribly traumatic experience because it induces the gag reflex in babies even more so than in adults?

4                    I have a much better appreciation of why PS and other life-threatening conditions of infancy are still so partially (and actually poorly) understood.
Despite having been recognised for around 300 years, many studies, and “modern medicine” being (arguably) a century or so old, the causes of PS are still only partially understood and the object of much debate and even argument.
Researching this subject has given me a deeper understanding of the complexity of the causes of PS and the sheer vastness of medical knowledge that needs to be assimilated.

5                    I realise that physical and emotional trauma and scarring from PS treatment have been much reduced.
Despite the fact that many areas of ignorance, uncertainty and debate remain, the improvements that have occurred to date are (I am grateful to say) obviously reducing both physical and emotional trauma and scarring.  This area is of the greatest interest and concern among people like me whose lives have been long and deeply affected by our infant surgery.

Next time: some of the negative thoughts I had as I worked on the medical journal material on PS.

6 thoughts on “Pyloric stenosis history and my story (1)

  1. Mark

    First off I would like to say that not only YOU have benefited from your research and sharing via this blog, but many others have as well. Many of us seem to have a almost instinctual drive to satisfy our questions about what happened to us as babies, and often why some of us had such interesting reactions over the years to our scars, memories, what to tell others when asked about “What happened THERE!”. Your blog has covered topics and delved into areas I have attempted to explore on my own, but instead of the frustrating dead ends I met, your blog has offered clear comprehensive answers.

    Thank you Fred for sharing your work and taking some personal risk to go public. Hopefully others that have silently followed your blog will step out of the shadows and join in the dialog. There is still lots to learn and understand, and many of the answers lie in the heads of people who are feeling apprehensive about standing up. I encourage them to do so, as anonymously as they might like, and offer the benefits of their experiences.

    1. Fred Vanderbom Post author

      Thanks so much for your encouragement, Mark. I certainly enjoy and benefit from finding and trying to create some order among so many people working and writing about PS-related matters. And I know you and others enjoy the fruits too, as the numbers finding these posts continue to rise.
      I was apprehensive about going public with these blogs over my name, but I’ve been pleasantly surprised that (apart from spam) the only response has been from fellow survivors or their relatives – very supportive, in other words.
      Some of us are looking into setting up a private discussion forum for those still affected by infant surgery and related matters. If you’d like to be included, please tell me in a Comment and I can then get back to you.

      1. Mark

        As long as there was some assurance of security and confidentiality, I would love to talk. Some of the stuff I have thought, felt, and done over the years, most of it PTSD related, might be too weird to share openly on the web. I am not ready to do that yet. But a private forum of some sort would be great!

  2. Fred Vanderbom Post author

    There will be others who feel the same and would value a safe place to explore their story and find reassurance and encouragement. We’re working on creating such a forum, and anyone interested in good faith is welcome to join.

  3. Wendy

    Wow, it seems a community is forming here and I’m all for it, as you know. I want to chime in to appreciate Fred and all he’s done to clarify the issues and demystify ps surgery. I am especially grateful for the articles on the history of ps surgery/treatment; moreover, I can go back to this archive any time I want or point someone else to this wealth of knowledge. Thank you for taking the time and investing the brain power into finding and decoding the medical texts and for synthesizing the material. Invaluable stuff that will continue to be valuable for decades to come!

    1. Fred Vanderbom Post author

      It is truly a major dream coming true as we see more visits, more comments and more interaction at our blogsites! I have enjoyed doing the medical-historical digging and keep realising there are many more side-issues to work on. It is taking many hours of work and thought, but I know this is helping our little community. May the fruits continue to spread and the circle to grow!


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