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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.

Why your doctor may delay diagnosing Pyloric Stenosis

A member / friend in Facebook’s Pyloric Stenosis (“PS”) network messaged me:

After having a baby with PS I find it very difficult to understand why it takes so long for the doctors or specialist to diagnose it.  Just like to know your thoughts.  We were obviously extremely lucky.

Several other common problems around infant PS were raised and we’ll seek to address each of these in the following posts.

If like this parent your baby’s (or your) PS was recognised and treated promptly without ongoing problems, you are indeed lucky and will feel very grateful to all concerned.

M820/0092But if you or your parents suffered to the extent of being traumatised by PS, you join a sizeable club!  Social forum sites such as Facebook, BabyCenter (or –Centre), MedHelp, and Topix have allowed many thousands of parents and PSers to voice their unhappy experience of medical matters related to PS.

Well may we all wonder about the actual number of people with the problems on this parent’s mind.  For readers who are wondering, What are the problems? please read on… Continue reading

Infant Surgery & PTSD – Links to Publications & Websites

Sometimes it is better not to know…

Some of those who owe their life to infant surgery in times past have become aware of the fact that safe and effective pediatric anesthesia and analgesia have only become almost generally used in developed countries in fairly recent years.

The medical mantra that “a baby does not feel, let alone remember pain” was widely believed and acted on in the medical world.  We can be thankful that many medical workers did nevertheless learn to work on infants using the available rudimentary anesthetic drugs and procedures. A powerful code of silence blanketed what was really happening and how widespread infant surgery without anesthesia was practised.

In 20 years of lay research and networking about this issue, I have yet to find a statistical report or journal article on the relevant facts and figures.  Understandably, parents were never told about the darker facts around their child’s operation, and those who dared to asked were most likely fobbed off – and certainly did not dare to share their concerns with their child in later years.

I have networked with an uncomfortable number of people who like me are grateful to be alive because of early surgery but have always been mystified by living with some of the symptoms of post-traumatic stress.

The medical mantras  about infants feeling and remembering pain were publicly challenged and steadily corrected only since 1987. I have written other posts here about this.

Here is a reading list for those who are interested in learning more about this matter.

Again: sometimes it is better not to know . . .

Inadequate pain management

New York Times – Researchers Warn on Anesthesia, Unsure of Risk to Children – http://www.nytimes.com/2015/02/26/health/researchers-call-for-more-study-of-anesthesia-risks-to-young-children.html (link)

Jill R Lawson, Standards of Practice and the pain of premature Infants – (pdf file incl additional articles) – http://www.recoveredscience.com/ROP_preemiepain.htm (link to Jill Lawson’s article only)

McGrath Patrick J – Science is not enough, The modern history of pediatric pain – Moderna historia dolor pediatrico.pdf – (file) – http://www.dolor.org.co/articulos/MOderna%20historia%20dolor%20pediatrico.pdf (link)

Pail’s Health Blog Nov 2010 – A Story of Babies in Pain and the Barbaric Malpractices of Medicine – http://www.theherbprof.com/blog/?p=66 (link)

Louis Tinnin, Awake and Paralyzed during Surgery – http://ezinearticles.com/?Awake-And-Paralyzed-During-Surgery&id=182472 (link)

Dvorsky, George, Why are so many Newborns still being denied Pain Relief? – http://gizmodo.com/why-are-so-many-newborns-still-being-denied-pain-relief-1755495866 (link)

 

Infant Memory

Chamberlain David B – CV & publications.pdf – (file)

Website – Birth Psychology – A Bibliography of Dr David B Chamberlain’s writings – https://birthpsychology.com/journals/volume-28-issue-4/chamberlain-bibliography (link)

David B Chamberlain, Babies are Conscious – (file)

David B Chamberlain, Babies Don’t Feel Pain – a Century of Denial in Medicine http://www.nocirc.org/symposia/second/chamberlain.html – (link)

Levine, Peter A, Waking the Tiger – Healing Trauma, North Atlantic Books, 1997 (book title)

Van der Kolk, Bessel, The Body Keeps the Score – (book & summary article title) http://www.franweiss.com/pdfs/sensorimotor_vanderkolk_1994.pdf (link)

Van der Kolk, Bessel, Brain, Mind and Body in the Healing of Trauma – http://www.shrinkrapradio.com/436.pdf (link)

Van der Kolk, Bessel, Developmental Trauma Disorder – (book & summary article title) http://www.traumacenter.org/products/pdf_files/Preprint_Dev_Trauma_Disorder.pdf (link)

Van der Kolk, Bessel, The Limits of Talk – http://www.traumacenter.org/products/pdf_files/networker.pdf (link)

 

PTSD from Infant Trauma

K J S Anand & P R Hickey, Pain and its Effects in the Human Neonate and Fetus – http://www.cirp.org/library/pain/anand/ (link)

The New York Times, 24 Nov 1987, Philip M Boffey, Infants’ Sense of Pain Finally Recognized – http://www.nytimes.com/1987/11/24/science/infants-sense-of-pain-is-recognized-finally.html (link)

The New York Times Magazine, 10 Feb 2008, Annie Murphy Paul, The First Ache, http://www.nytimes.com/2008/02/10/magazine/10Fetal-t.html?_r=1&ex=12 (link)

Monell, Terry – When Pediatric Surgery causes Permanent Damage.docx (file)

Dr Louis Tinnin – Infant Surgery without Anesthesia 130707.docx (file) – https://ltinnin.wordpress.com/ and https://ltinnin.wordpress.com/2010/12/30/infant-surgery-without-anesthesia/  (link)

Wendy P Williams – Are Your Symptoms due to Infant Surgical Trauma? – http://restoryyourlife.com/ptsd-post-traumatic-stress-disorder-dr-louis-tinnin-infant-surgery-without-anesthesia-pyloric-stenosis/ (link)

Wendy P Williams – Ten things to remember about pre-verbal Infant Trauma – http://restoryyourlife.com/preverbal-infant-trauma-preverbal-memory-emotions-sensations-breath-anxiety/ (link)

National Institute of Mental Health (USA) – comprehensive introductory brochure on PTSD – https://infocenter.nimh.nih.gov/nimh/product/Post-Traumatic-Stress-Disorder/QF%2016-6388 (link to brochure)

Ten things People with PTSD-related Dissociation should know – http://healthiest.pw/10-things-people-with-ptsd-related-dissociation-should-know/ (link)

 

Personal accounts

Kyle Elizabeth Freeman – Blogger at “Gutsy Beautiful Complicated”, Childhood Medical Trauma – 36 Years Later – https://gutsybeautifulcomplicated.com/2012/11/03/coming-to-terms-with-trauma-thirty-nine-years-later/kyle.elizabeth.freeman@gmail.com

 

N B – Chamberlain, Dvorsky, Van der Kolk and some others listed here have other material online and/or for sale

 

N B – this List is a work in progress

Christmas greetings and …

Dear Reader,

Receive my best wishes for a joyful Christmas Season and a great New Year.  I trust that you can enjoy some special times, hopefully with family and friends, as well as a change of pace and focus.

Magi05.gif

In many ways 2015 has been an unusual but wonderful year for my wife Helen and me.

We completed a total of 11 months of happy and productive locum work in NW Tasmania and Geelong churches, enabling us to make many new friends and reconnect with several others as well as our children and siblings in Tasmania and Victoria (two Australian States).

We sold our first owned home and are building another, again in a NE Adelaide suburb; we are told that we’ll be able to move in late July.  In the meantime, our home base is now the rumpus room of our daughter’s family home very close to where we are building.

Last June we cruised the Pacific with one of our children’s families and celebrated my 70th in a holiday camp with all our children and their families.  My Facebook photo albums show and tell those stories!

We’re both not surprised but a bit sad that we lacked the energy and time to continue with some of our initial retirement commitments and connections – but we certainly replaced these with other productive involvement.  And in 2016 I look forward to more regular blogging.

Thank you for your interest in my Blog – your responses and feedback are always welcome.

With my warm greetings,

Fred Vanderbom

A busy blog on infant surgery

writer-thumb2012 was a great 2nd year for this blogsite.  Traffic more than doubled, and feedback even more so.  There is clearly a need for accurate, well-researched, responsible and comprehensive information about my subject, infant pyloric stenosis and its treatment.  I pay particular attention to the surgery for this condition and the possible after-effects of the condition and its treatment, which although far from universal are far from exceptional.

An American friend and co-blogger has posted about this subject since early 2009, giving special attention to how she has experienced PTSD after her infant surgery (also for pyloric stenosis), and to the therapies that she has found helped her towards healing.

WordPress hosts this blog, and it’s the most popular and I believe the best host in the business!  WordPress gives me (the blogger) lots of information about how I’m going and can do better, and every year it provides a summary of results.  Here are some of the details.

I started to post to my blogsite SurvivingInfantSurgery after retiring from full-time work late 2010, having started to research my subject quite thoroughly since I gained access to the web in 1997.  During the first 13 months (from December 2010) I posted 106 times and WordPress recorded almost 8,000 visits, a daily average of 22.

blog-writing01During 2012 I posted 54 times, and the visits rose to almost 18,000 with a daily average of 49.  The rate of visits fluctuated, however: the monthly average of “hits” ranged from 26 to a whopping 73.  The average daily for the first week of 2013 was 70.

On one day last October, the blog recorded 339 visits, the great majority being from Pakistan and looking at a post that sought to create a better understanding between pediatricians and the parents of sick babies.  I can only conjecture that a medical school was advised to read it… any better (or whackier) ideas?

I was interested to note that the five most-read posts last year were all written in 2011.  In order they were –

  1. one of the posts on adhesions following infant and other abdominal surgery;
  2. The first of 3 posts on the effect of post-surgery adhesions and scars on a pregnancy;
  3. healthy doctors and patients (referred to above);
  4. the long-term effects of pyloric stenosis and its surgery; and
  5. a post on the way pyloric stenosis was treated in the 1940s and ’50s (of strong interest to my generation) – one of two on this period and part of a series reviewing the 100 years of this surgery.

I try to include several images with each post, if possible to illustrate or further explain the text, and otherwise to break up the print that results from my verbose information-giving.  Many of the visits are from people looking for illustrative material on the subjects I write about.

Understandably, the great majority of readers were from the USA, followed by the UK, Canada, Australia, India and (yes) Pakistan.  But our 2012 readers live in 133 countries, most of them without English as their first language.  Thanks to modern communications, our world is fast becoming a global village!

My blog has become noticeably more evident and traceable on the web, as any search for its subject matter will quickly show.  The number of visits also means it gets a good rating with search engines, and including links to other subjects on which I have posted has also served to increase traffic.

Fred blogging01wThe success of my blogsite has been most gratifying to me personally.  I find writing satisfying: it prompts me to continue researching my subjects, helps clarify my thinking, and has therapeutic value, as I enjoy writing and especially when I know that I have at very long last overcome most of my deep-seated embarrassment and inner pain and struggle about what was for so long a closed chapter.

But just as much, it gives me enormous satisfaction that my research and blog have occasioned networking with others who have also experienced post-traumatic stress after infant surgery.  Some of these contacts have been brief, others extended and a very few have resulted in ongoing friendship that comes with continuing interaction.  Many of those who write to me have feelings of relief and being understood that are mutual.  Hooray and I thank God.

A third area of great satisfaction is that during the past year I and others have increasingly interacted with health professionals: we are becoming more visible and widely heard, and others are entering the areas of our concern.  In most cases these surgeons, paediatricians, and therapists are in compatible work.

It remains my hope that SurvivingInfantSurgery will continue to flourish, informing, encouraging and strengthening the community of those who as parents or survivors (and sometimes as both) recognise and support the need to raise parents’, patients’ and doctors’ awareness of aspects of pyloric stenosis and other conditions of infancy that have been denied or ignored for far too long.

2011 in review

The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog. Regular readers may find this interesting reading. Best wishes to all our readers, regular and casual, for a good – better – best new year 2012.

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 7,300 times in 2011. If it were a NYC subway train, it would take about 6 trips to carry that many people.

Click here to see the complete report.