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.

Ramstedt Conrad im Op RaphaelKlinik1a
Dr Conrad Ramstedt operating at the St Raphaelklinik

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?

150414-011It 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.

arrogant doc4On 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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Immediate hazards after Pyloric Stenosis

Parents - worry01Having your new baby go through surgery, however “minor” in the eyes of the medical world, is always harrowing for the parents.  Those who have written about this will almost always say it was their most traumatic time ever, and some continue to suffer post-traumatic stress.

Remember that this surgery almost always follows a period of your infant being sick and steadily losing condition, followed by what may be a deeply upsetting period of doctor visits, medical tests, specialist consultations, and typical hospital admission procedures – with baby’s condition steadily going downhill…

Remember also that doctors are human: far too many treat their fragile patients and parents poorly, and diagnosis is too often avoided or faulty, too often ending only at a near-terminal crisis.  All this adds to the stress and strain.

Add to this that surgery for infant pyloric stenosis (“PS”) surgery is often promised to be a “quick fix”.  Although many of these little patients do recover promptly and quickly more than catch up on their weight loss, other PS babies take months or even years to find their balance – and some few never do.

Add to this that many surgeons seem to regard their responsibilities as ending when they leave the operating room, and that many GPs simply don’t engage with parents who have a baby with a feeding problem.

What are the main problems parents may have to manage after PS surgery? Continue reading “Immediate hazards after Pyloric Stenosis”

The Redo Power of EMDR

“Nice and soft,” my pediatrician proclaimed after palpating my two-year-old belly as I lay naked on the exam table.  Once again he could not find that solid stone, the pyloric ‘tumor’ or ‘swelling’ of the pyloric muscle, that shortly after birth, had stopped my stomach from working. “Could she have problems down the road, say when she’s fifty?” my mother asked. “I don’t think so. We’ll keep checking, of course.” To many, this conversation may seem benign, but for me, the one whose body they were referring to, danger took root.

At any point, I could be in trouble, I understood. At any time, I could be stricken, close to death, feeling unbearable pain. The ‘tumor’ might return. I don’t recall thinking these thoughts. I do recall panicking. I do remember tensing up, my breath and mind freezing. I do recall alarm bells going off in my head and a thousand unformed questions battling one another. Emotionally, I lifted off the planet, helpless, alone, and afraid for my life. Emotionally, I got stuck. When would it be back?, I worried.

In EDMR therapy sixty-four years later, those questions about what I’d heard as a child were still emotionally alive. As the wand whipped back and forth, I found myself back on the exam table but this time, in a reflective mode, not actually in the experience itself. A nurturing, older self stood next to toddler-me, my mother absent. Toddler-me to nurturer: “So my body could attack me again? Could I end up in the hospital?  Could I die?  So I need to be hyper-aware as to whether it’s come back?” My hands shot up to my throat. “Will I be intubated again?” These thoughts and emotions rapid- fired out of me as the wand swung left and right. The nurturer, that more adult part of me, answered with equanimity and grace: “Don’t worry. You are fine. You won’t be sick again. The operation fixed you. You are free!”

Then, as the wand continued metronoming, I was my child-self in kindergarten, running without hesitation to play in the doll house and next, to the sand box, unburdened, without that constant cautiousness and dread I’d always felt–without the fear of death weighing on my shoulders. I was light and happy, gravitating toward whatever stirred my fancy–fleet and spontaneous. Happy!  EMDR  interrupted that terror that the early conversation between my mother and the doctor and the consequent unasked questions spawned. A new neuronal brain loop formed, sparking movement toward a new way of being in the world. Such is the power of EMDR to undo and redo! The power of EMDR to heal.

–by Wendy Patrice Williams

Infant pyloric stenosis – and its possible long-term effects

Patient & doctor03People who have had a close experience of infant Pyloric Stenosis (whether their own or as a parent) are often bewildered and perhaps bemused by the medical mantra that “You’ll have a new child – there are no known long-term effects”.

We can be thankful that it seems that this well-meant but misleading assurance is usually (but far from always) valid, both in the short and long term.  Because Pyloric Stenosis (“PS”) is rather common (2-5 in every 1,000 babies is a huge number world-wide) the widespread lack of awareness of and interest in the possible long-term effects of PS is probably a good indication that ongoing problems affect only a relatively small number – but again, worldwide this is a huge number. The web forum pages of Facebook, MedHelp, Patient, and Topix bear this out.  So do the more than 100+ visits each day to my original Blog (started in 2010).

If only our experiences and the facts agreed with that mantra!  This Blog is all about doing something about “What we wish we’d known” (its web address).

Short term long term cartoon02WordPress (which hosts my older blog) also gives me feedback, and it’s not surprising that the top number of searches there have been for information about the long-term effects of PS and the surgery for it.  In this post I overview the material I posted about this to my original Blog. In the coming months I plan to post progressively to this Blog, which has an Index Page (see the banner at the top of this screen) to enable readers to overview and access its contents.

What we wish we’d known and what we want to know about the possible long-term effects of PS… please read on… Continue reading “Infant pyloric stenosis – and its possible long-term effects”

Infant Surgery and Post Traumatic Stress – some key references

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 – Body (or Somatic) 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)

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)

  • 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

– Fred Vanderbom

Launching Our PS Awareness Blog

Pyloric Stenosis (PS) treatment has come a long way since my surgery for this condition in 1952. In the old days, babies were isolated after the operation, no family visiting. No nice clear plastic surgical tubing brought oxygen and fluids to the baby; the “hoses were black, an inch thick, and so numerous, I could hardly see you,” my mother told me. And my scar was formidable, like a crazy TV antenna, which grew bigger with time.

Today, rocking chairs in neonatal intensive care units, or NICUs, are often made available for family visits. The surgical tubing is light-weight and clear, adhesive strips with cartoon images  holding them in place. And the scar?  Smaller, given the possibility of having a laparoscopic pyloromyotomy versus an open procedure for which the incision, hence the scar, would be bigger. Even so, the scar from the open method or Ramstedt’s surgery of today is far more cosmetic than an earlier one. Finally, baby is typically released after one or two days as opposed to ten days to two weeks! Continue reading “Launching Our PS Awareness Blog”

Building greater awareness

This Blog is for people troubled because of infant pyloric stenosis – their baby’s or their own.

Patient & doctor03.jpgFor many people, pyloric stenosis (“PS”) is something they’ve never heard of, even though all of us probably know several people who have had it.

Most people who have experienced PS (either as a parent or close family member, or personally) have been able to put what they often say was their “most traumatic experience ever” behind them.  I suspect and hope that these folk are a “silent majority”.

However, there are many (I believe quite a sizeable minority) who are or have been deeply troubled by PS, either as the parents of a PS baby, or as a “survivor”. Continue reading “Building greater awareness”