Past Pylorix Pages – Pyloric Stenosis treatment in the 1990s (2): Lap PS surgery

In my previous post I wrote about the introduction during the early 1990s of umbilical pyloromyotomy, the surgical treatment of infant pyloric stenosis (PS) in a way that results in minimal scarring.  Growing up and venturing into the adult world with an obvious but mystery scar has been a significant hurdle for many PS survivors.

I know this from personal experience.  Many of us who escaped a very early death would be even more grateful for the gift of our life if early surgery had not left us with challenges including sometimes PTSD, a prominent scar and / or parents from a past age which expected children to be seen but not heard, even if it concerned their troubling personal questions.

A second new treatment option was introduced for PS babies in the 1990’s.  Minimal access (MAS) or laparoscopic surgery became available from 1991 for a growing if short list of infant “procedures”.  Medical journal articles trace the growing refinement and availability of MAS for PS through the 1990s and the decade since.

Typical stab wounds from minimal access surgery to treat pyloric stenosis

At first MAS for PS came with frequent complications (or “a high morbidity rate” to use medical jargon).  The frequency of mistakes and after-effects associated with PS surgery had been steadily reduced during the 20th century, but now increased again as surgeons had to work without direct sight of their “target area”.

  • Perforation of the mucosa (the inner lining of the pylorus) or the duodenum is the result of a too deep or lengthy cutting of the pyloric muscle: it is life threatening if not immediately recognised and repaired.
  • Incomplete pyloromyotomy results from insufficient splitting of the swollen pylorus and does not become clear until it is found that the baby continues to vomit several days after its operation.
  • Bleeding is not normally a hazard in pyloromyotomy, but when it occurs it also must be managed promptly.
  • Infection of the umbilicus can occur from both umbilical and MAS pyloromyotomy because of the difficulty of sterilising the folds inside the umbilical stump.

It was found that pediatric surgeons needed some 25 operations to become MAS-pyloromyotomy-skilled, and that this surgery should therefore only be considered in hospitals with sufficiently skilled teams of surgeons and anesthetists.

Which new surgical technique is to be preferred?

27 years of progress: a German father and son after PS surgery – the son by the umbilicus

During my years of work on this subject it has become clear to me that if one of my grandchildren had needed PS surgery (which I am grateful has not occurred) I would advise that provided there was a choice and that provided the operation could be done by a skilled and careful surgeon, the parents choose surgery via the umbilicus rather than MAS.

The scar from a carefully done umbilical pyloromyotomy can be almost invisible, as the photos with the previous post make clear.

However, MAS pyloromyotomy is normally done through three small stab wounds of about 3 cm each and including one through the umbilicus.  These wounds often heal very well and become almost invisible after a year or so, much to the relief of the anxious parents.  But the scars will grow with the child, eventually tripling in size and usually becoming quite indented.  I have noticed that these PSers even before teenage look seem to have three belly buttons, not something I would have found easier to deal with than the centipede scar on my belly!  The development of these obvious pits is impossible to avoid although good plastic surgery in later life could release them from the underlying tissue and reduce the indentation.

The development of anesthesia continued during the 1990s and many reports and other articles help tell this story.  The use of the various forms of ether had died out in most operating rooms due to its undesirable effects.  The trauma that resulted from the giving of ether and other early anesthetics disappeared as quick acting sedative drugs like sodium pentothal came to be injected prior to the induction of deep anesthesia.  Paralysing drugs and endo-tracheal tubing to support breathing and avoid the inhalation of vomit and secretions were now only introduced after the patient was unconscious.

Lay persons like me will be utterly horrified that during the 1990s some pediatric anesthetists and surgeons continued to insist on the claimed benefits of intubating the patient while awake, and/or to maintain that infants are not affected by lack of general or local pain control and by being paralysed during awake surgery.  Whilst I can understand that every choice of technique will more than likely have both drawbacks and benefits, the fact that these issues continued to be debated during the 1990s tells me something about human nature and some of the problems of the medical profession.

Finally what I find a somewhat sad note.  A 1991 letter by two British paediatricians tells us that Eumydrin, a muscle relaxing drug long used to treat most mild PS cases with medicine rather than the knife, was taken off the market in 1987.  These men also commented that this move was not unconnected with a growing lack of training and experience among doctors in the non-surgical treatment of PS.  This meant that surgery for PS was becoming the only available treatment for PS, at least in the English-speaking world.

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10 thoughts on “Past Pylorix Pages – Pyloric Stenosis treatment in the 1990s (2): Lap PS surgery

  1. Mark

    Fred, I am also a PS and PTSD survivor. We communicated 7-9 years ago. Your blog is wonderful and I have really enjoyed the new information and the many personal suspicions you have confirmed. Looking forward to what’s coming next!

    Reply
  2. Fred Vanderbom Post author

    Thanks for your encouraging comments, Mark. I myself am also enjoying discovering, reflecting on and writing up the material that’s out there. It seems the issues I raise are not for everyone with a PS history, but for many, including those of us with symptoms of PTSD, it certainly can be healing to have some of our questions answered and to know we are not alone, nor freaks.

    Reply
    1. Mark

      You probably have as good of a list of PS/PTSD people out there. Is there a private forum where they are chatting or blogging?

      Reply
    2. kelly

      I often wonder what medications were used in 1969 when I had my operation done. I suffer from Dystonia (cervical, a muscle movement disorder, thyroid problems, IBM / anxiety/depression. I’m wondering if this has anything to do with the other. My older sister had it done about 5 years earlier. She suffers from anxiety/depression and thyroid problems and vidaligo. Thanks.

      Reply
      1. Fred Vanderbom Post author

        Hi Kelly, for my own guidance as well as our readers’ help I have taken the liberty of editing your question a little and looking up some of the big words you used. Please let me know (by post or email) if I have got your post wrong in any way.
        Dystonia – abnormal muscle tone resulting in muscular spasm and abnormal posture, typically due to neurological disease or a side effect of drug therapy.
        IBM – Inclusion body myositis (IBM) is an inflammatory muscle disease.
        Vitiligo – a condition in which the pigment is lost from areas of the skin, causing whitish patches, often with no clear cause.
        To answer your question, it will probably be hard for you to find a doctor who can answer your questions with authority. I am very sorry to say that most GPs don’t have a detailed knowledge of PS, its ongoing effects, and the possible long-term effects of early infant surgery. These have hardly been researched, and the general attitude to PS is that the operation = end-of-story – despite the countless experience stories I have on file.
        I have not come across any PSer with anything like the particular ongoing effects from their PS operation that you mention. However, much of what you mention fits in with the kind of things I have read can happen after the PS operation. Let me continue…
        1. A small percentage of PS babies have other developmental and genetic flaws. Don’t forget PS is quite common (3-5:1000), so that even if only 1% have these problems that is many people.
        2. Only in 1987 did it become public knowledge that many infant operations were being done without pain relief because anesthetising babies is risky and anyway, “babies don’t remember pain”. It is now known that our bodies are deeply affected by trauma even when we have no conscious memory of it. Two signs of PTSD are what you have described: anxiety and depression.
        3. Only in recent years have scientists become aware of the long-term effects of anesthetic and other drugs (when used) and especially when used on babies.
        4. It would certainly help you to understand your situation more helpfully if you can trace the surgeon and hospital of your operation. Or if you can speak with a good friend who works in the medical world. u’d like to find out what kind of surgical practices might have been used at your time, and (even better) get a copy of your medical record! However, such searches and requests are not often possible – or successful.
        5. I’m not medically trained but have been reading and writing about PS for many years. From what I know and what you mention, my guess is that your sister and you were affected psychologically by your operation, and that the dystonia and IMB are not unlike conditions which other PSers suffer. The thyroid problems and your sister’s vitiligo sound more like genetic / hormonal, but even such upsets can be triggered by trauma.
        Please feel free to ask further questions or email me via the “About me” page.

  3. Fred Vanderbom Post author

    Mark, I have “met” many PSers, but very, very few admit to PTSD that may be related. However, I’m sure there are many who have struggled like us. I’m not aware of any PS forums or chatrooms, but if there is interest, I’ll do my best to get a private forum going.
    So far I’ve only had continuing contact with Wendy, my fellow blogger. I have had email or forum “message” correspondence of varying duration with a large number of people, and I’d love to see some people tell me they’d like to join an “amongst ourselves” PS community forum where we can open up and share our PS experiences.
    So if you or others are or may be interested, let me know! If you “Comment” here or on one of Wendy’s “myincision” posts, WordPress gives us your email address and we can contact you.

    Reply
  4. Fred Vanderbom Post author

    Hey dear Scar Sister, that can’t be! Every time I see that photo I think it’s of mine. Mebbee we’re scar twins? When I first met people who had also had this surgery (back in 1972), one of the two also had a scar just like mine.

    Reply
  5. Mel

    I love how now they are doing the surgery laparoscopically. All 3 of my sons have had it. The oldest was in the hospital for a week due to his incision becoming infected, but the baby, who had the laparoscopical surgery, was in one day and out the next.

    Reply
    1. Fred Vanderbom Post author

      Wow, Mel, you have certainly got PS in your family’s genes! Thank you for your comment. You and your family have been lucky (in a sense) to have caught the wonderful wave that is giving many people safer and less damaging surgery. However, all surgery carries risks, and concerns remain about risks associated with both laparoscopic surgery and general anesthesia in early infancy. I plan to post about this soon.
      Your first son’s troubles remind me that open surgery is still often used to treat infant PS, and also that the medical treatment alternative seems to be raised and/or properly considered only very, very sometimes. When PS occurs successively as it did in your family, the option of medical treatment should be given an especially high profile – as it is in some advanced countries.

      Reply

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