Pyloric Stenosis’ Game-changer

The German Dr Conrad Ramstedt’s surgical remedy for infant pyloric stenosis was announced to the world at a medical conference and publication in 1912.

This event hardly affected the great majority of the human race, but it was of course rather significant for someone who underwent that surgery 33 years later to save his life just 10 days after his mother gave him birth.  And because pyloric stenosis (“PS”) affects between 3 and 5 babies in every thousand born in developed countries, and most of these are treated surgically, there are many people alive today because of Ramstedt’s discovery.

However, one only has to research the history of this condition and its treatment to realise that whilst the German doctor realised he had made a significant discovery, he was also the unwitting cause of trauma in at least some and perhaps many PS babies and their parents.  Let me explain…

In 1912, the medical treatment of PS babies was the rule but very risky, and almost half the infants died despite it.  Several surgical techniques were then being offered as an alternative for PS babies, but these were so drastic and severe on a tiny, malnourished and dehydrated baby that the great majority died of surgical shock, infection, and other related causes.  Most parents took their chances with the available medicines… and prayed.

RamstedtConrad operating

Dr Conrad Ramstedt operating

Dr Conrad Ramstedt’s accidental discovery in 1911 was published in October 1912 and represented a major breakthrough: see this post and this one.  The Ramstedt pyloromyotomy was rapidly adopted as the remedy of choice in most developed countries around the world, and in four decades after 1912, deaths from PS fell to almost nil in most countries.  However, even in the 1940s, some countries (including Great Britain) continued to report their PS mortality was still at 25%.  I have been shocked by how many mentions there are on the web of relatives dying of PS, even in the 1950s.  Despite all this, Ramstedt’s technique and better health standards in hospitals have done much to make death from PS most uncommon today.

How did the Ramstedt pyloromyotomy contribute to this?

Pic 13It made treating PS relatively easy and simple for surgeons, hospital staff, and parents. For surgeons the technique requires practice and care, but is essentially one of the simplest surgical procedures on the surgeries list.  The surgery usually ends the violent and deadly vomiting; although some continued vomiting and reflux occur quite often, it is fairly rare that an incomplete myotomy (division of the pyloric muscle) or the muscle’s redevelopment requires a repeat of the surgery.  So: anxious parents are greatly relieved, the surgeon immediately becomes a warrior-hero, and the baby quickly starts to make up for weight lost: I gather that my post-op photo is quite typical!

Apart from the great relief of all concerned, the Ramstedt pyloromyotomy saves pediatric ward staff and the bay’s parents from having to manage (or endure) weeks (and often two months) of medical treatment, with each of the sick baby’s feeds requiring medication be administered beforehand to a rigid schedule, milk having to be given slowly and carefully, daily weighing, and regular consultations with the hospital clinic or paediatrician.  Why put yourself through all that when surrendering your baby for just an hour or so to the gowned and skilled surgical staff produces what often seems like an instant fix?

Some babies are best treated surgically, and of the babies treated medically, up to 20% will not respond sufficiently well to avoid belated surgery.

Superman MD1On the other hand, almost all Ramstedt pyloromyotomies seem to be fully effective, certainly in the immediate sense.  And although the worldwide web includes many thousands of complaints and stories of a long list of troublesome ongoing effects from their PS or its surgery, it is just as clear that the vast majority of survivors and their parents are satisfied enough not to air their troubles.  The possible effects of the surgery are many and real, and sometimes severe, but many PS survivors report little or no gastric or abdominal discomfort, few or no problems with their scar or adhesions, and no trauma.  And this silence of the vast majority of PS patients has enabled most of the medical world to assure anxious and worried parents that “PS and its surgery will have no after-effects on your dear child”.

What I have written so far gives me some cause for concern, however.

Ramstedt’s discovery at once saved my life (and I’ve had more than 70 very good years so far), and it has also been responsible for the trauma I and not a few others have had to deal with (often chiefly in private) for most of our lives.

It was quite unintentional, but it is nevertheless true that Ramstedt’s surgical solution for PS effectively and inexorably moved the medical community’s interest away from perfecting the already (and still today) quite effective treatment of PS with cheap and simple medication and careful maternal nursing.  The Ramstedt pyloromyotomy is (as stated above) in itself what many surgeons call “elegant”: it is easy, quick and usually effective.  But until quite recently the surgery and what came with it could be very severe and traumatic on the baby and also on the parents, and it was associated with more (and more severe) risk factors than the medical alternative.

Thus the Ramstedt pyloromyotomy helped fuel the ascendancy of the power and prestige of the surgeon with which some of us are all too familiar today!  We must remember that specialist and high technology medical science has been very largely responsible for our rising health standards and life expectancies, but in fact PS is one of the maladies that can in most cases be brought under control by medical means and with surgery kept as a last resort.  In some developed countries, PS continues to be managed in this manner, and in many developing countries, medical treatment is far more affordable and widely available, and thus the first option.

So Ramstedt’s operation short-circuited interest in understanding and managing the causes, pathogenesis (biochemical development such as proposed by Dr Ian M Rogers) and even prevention of PS.

Whilst I am deeply grateful for the operation that saved my life and realise that in my case surgery may well have been the only responsible remedy, I have often wished that I could have been treated more gently, without a disfiguring scar, and without inflicting life-long trauma on my parents and me.

And in this wish I am not alone.

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10 thoughts on “Pyloric Stenosis’ Game-changer

  1. Wendy

    Parents need to have a choice about treatment options for their babies with PS, which most currently do not. Wouldn’t it be great if parents could choose between the medical treatment of PS and the surgical? Parents could figure out what’s best for their family with, of course, their doctor’s help. But with regard to PS, at least in America, the remedy is one size fits all. Sometimes a choice is not possible because the baby is in danger, as was I in 1952. But that was because my mother’s concern with my losing weight was pooh-poohed by the doctors and attributed to my mother’s inability to breastfeed properly. So by the time the doctors gave in and said, yes, she has PS, I needed the surgery desperately. In cases in which PS is detected early however, parents should have the option to decide the type of treatment their baby receives. Certainly if Dr. Rogers’ hyacidity theory were taken seriously, “elegant” medical treatments would be developed, I am sure of this.

    Reply
  2. Lucy squire

    Hello, I had the operation for pyloric stenosis in 1968 and I have a large ugly scar on my abdomen. 2 weeks ago I started having continuous abdominal pain and my doctor felt my abdomen, said I probably have gallstones blocking my bile duct and put me on antibiotics and pain killers. I am having an ultrasound scan on Monday.
    I am so glad I read your page, I will certainly mention the possibility of adhesions from my PS operation.
    Thankyou

    Reply
    1. Fred Vanderbom Post author

      Lucy, thank you for your post. The statistics for my blog show it’s very well read, but it’s comments like yours that put a human face on the figures, give me a better idea of what readers are looking for here, and they also keep nudging me to maintain and add to this blog.
      You will have read that adhesions can prompt doctors to suspect gall-bladder disease, so I trust that your medical advisors are thorough in their diagnostic work before they risk triggering more adhesion trouble for you. Several PS survivors have posted about losing a perfectly healthy gall-bladder – and we only get to know that if our surgeon tells us the whole story! However, gall-bladder problems are quite common, and especially in some families.
      I’m currently working through my several thousand files on PS-related matters, so that my blogging can deal with the most current issues and recent findings, as well as learning from the more distant past. One thing I have noticed is that infant patients’ emotional welfare has only recently become a widely expressed concern of the medical world. It is now openly reported that in the past the only concern was saving lives. Only in the last 25 years or so have pain control and scar cosmesis (in infant surgery) come to figure in the torrent of medical reports that are available online.
      I used to think that my story (ugly scar, emotional/trauma issues, etc) was almost ancient history. Sadly the medical world has taken much longer to face up to its most damaging attitudes and deceptive mantras regarding infant surgery. But things are now on the improve (despite the inevitable bad experience).

      Reply
  3. Mick O Donnell

    I am very interested to find out more about what happened to me as a child (in 1954) because both my parents are long dead and there is no one alive who knows my story. I had an operation in Dublin in 1954 as a baby for PS. I checked with the hospital but they have no records of when I was admitted or discharged. Can anyone tell me how sick would I have been and how long would I have spent in hospital? I still have the scars from the operation.

    Reply
    1. Fred Vanderbom Post author

      Mick, I expect many people (incl. myself) are in your situation. My parents would never answer my questions (due to their trauma, I understand), and when they died 25 years ago I knew far too little to have been able to probe a bit beyond my obvious questions. And like you I found my hospital records were gone: the hospital was demolished long ago and its replacement had destroyed the old records. Your operation was about 9 years after mine, and so what I’ve learnt about how PS was dealt with in those years (see “My Story” on the banner, and several posts also) is of a general nature but probably applies to you also, although there is quite a range of what typically happened back then. I remember from seeing my chart (destroyed later by my parents) that I was operated on when 10 days old and that my weight fell briefly but sharply in just a few days before day 10. Then as now, PS usually appears between weeks 2 and 13, with a very few cases showing up earlier or later. The period for diagnosis can also vary from one day to 4 weeks and sometimes even longer, but usually 1-2 weeks. The usual hospital stay policy at the time was 10-14 post-op days, but a small minority of surgeons discharged their little patients after just 1-3 days to reduce the risk of infection.
      The policy on pain control and surgical technique also varied then as it still does – between doctors, hospitals and countries. Pediatric anesthesia did not start to develop as a specialty until the 1950s: through most of the 20th century some surgeons were confident to use light general anesthesia on babies, but many others did not, as infants under 2 years old are very vulnerable to the analgesic drugs in use until recent times. The almost general use of general anesthesia was not established in all developed countries until the 1990s. Many babies therefore had less than total or effective pain control. I have posted on this story also.
      The vertical incision (midline and to the right) was used to access the pylorus at first, but after 1930 the transverse (cross) incision mostly replaced it in the USA. In your part of the world (incl. GB and Europe) the two verticals stayed in favour, although since the 1990s keyhole and umbilical access have been increasingly favoured over more open surgery. Each of these access techniques has surgeon-followers with pro and con arguments! And parents and survivors have become far more vocal than in the past about the cosmetic aspect of infant (and later) surgery.
      Feel free to reply or ask more questions as a Comment or via email (use the “About Me” tab on the banner).

      Reply
      1. Mick O Donnell

        Fred

        Thanks you so much for your detailed reply. It is very helpful. I do remember my mother telling me that I was brought by car to Dublin from a remote part of Ireland and on the way up they continually checked me, thought I was dead on several occasions and contemplated turning the car around many times. One other thing I remember my mother saying that when I was 1 year old I looked the size of a 3 month old baby. Thankfully I have grown up to be quite a substantial adult so I made a complete recovery.
        My incision was a vertical one. I still have the scar from the stitches. You say I could have been kept up to 14 days in hospital. This is the one piece of info that I really wanted to get from the hospital – how long did I spend in hospital? I was not ever able to find this out. The reason why this info is so important to me is that I know that my parents were not allowed to stay in hospital with me (that was the way for all babies in hospital at that time). I have grown up with quite substantial attachment issues to my parents when they were alive and now with my partner. It is as I am afraid of abandonment and my intimate relations are quite anxious as a result. I wondered if being on my own for up to weeks has left a constant neediness for closeness yet also afraid of it when I get it. I do feel it must have been very traumatic to be left for 2 weeks (not to mention the PS condition) without my mother and left with strangers. All my life I never once felt close to my mother. I do not know Fred if you could or would want to share how you turned out and if you think you were affected by it. Or maybe there are other readers out there who may have had a similar experience to mine.
        Thanks again for your reply. I look forward to hear from you again.
        Mick

      2. Fred Vanderbom Post author

        Good to get your response so quickly, Mick!
        “My Story” on the Blog header will give you some idea of the little I do know about what my parents and I went through, and I won’t repeat that here. But my 9 month photo does show that like most PS babies I made up for my setback very strongly. From what you mention about being almost “beyond it” by the time you were at the hospital, and a slow grower in your first year, I learn that you were either a very intense case (rapidly developing to critical) like I was, and probably even more damaged physically and emotionally, or your diagnosis was terribly tardy – which is far more common. Or both.
        I can identify with what you mention about your attachment problem, although mine was I believe not as severe. My mother (as I wrote in that “story”) was not allowed near me for the weeks I was hospitalised, and we did have a difficult, complex relationship. What you describe and the related memory and trauma discoveries are the subject of several study reports which I’d be happy to send you if you’re interested.
        You may well be aware that our parents probably also had emotional issues as a result of our PS: even today many describe their child’s PS and operation as the most traumatic event of their lives, and much as been written about how this can become a form of PTSD. I am thankful that all this has not affected my marriage very much, although (again. as written) I’ve lived with some other lifelong emotional issues – not well understood until I was able to delve into all the data and networking available online today!
        I have noticed that (from what I recollect) all the Irish / Dublin Py-people who have mentioned their scar have a vertical one like yours (and my Dutch one). With that position and with the big skin sutures that were also the standard then, all these scars look fairly similar from what I have seen… although for my first 25 years I feared I was a uniquely disfigured man!

      3. Mick O Donnell

        Fred

        Yes I would be interested in reading the Web links you suggest. Can you send them to me please?

        Thanks

        Mick

  4. Susan D Laboy

    Hello. My daughter is doing a research paper on PS and I am providing her with my personal experience. I am now 53 and was DX with PS when I was almost 4 wks old when my parents took me to the ER for projectile vomiting and almost continuous crying. The surgery was performed on 27 Nov and I was discharged 17 Dec. I too have lived with this huge scar and the hundreds of “what happened there” questions. Anyway, I have copies of my ER visit and the surgical notes and I’m trying to make out the name of a medication that was used with Ether. Starts with a V. I know that’s not much to go on but thought I’d ask anyway.

    Reply
    1. Fred Vanderbom Post author

      Hello Susan! Thanks for your question… I have just been working on the anesthesia part of my section of a small book on PS on which Dr Ian Rogers and I have been working, and knew I’d seen something that may be fit you are looking for. It is one of the forms of ether, variously named Vinyl ether or Vinethene. I’d be interested to know if this fits what’s in the notes! You will find something about this substance at https://en.wikipedia.org/wiki/Vinyl_ether
      Best wishes – and good on your daughter for doing some research on PS. If she doesn’t mind letting me have a copy of her work, my email address is fred.vanderbom@gmail.com

      Reply

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