Tag Archives: 1940s

Who do you think you are?

Recently I watched the 100th program of the popular TV series, Who do you think you are?

ponderAppropriately, it was a review of some of the most notable of the 100 stories to date.  Two utterly poignant segments joined “survivors” ardent about unearthing the fate of their ancestors and family members.  An Anglo-African woman hoped to find some mention of her ancestors who had laboured as African slaves in Antigua.  Another woman’s relatives were among the Jews trapped in Belorussia during the Holocaust: it was known that 2 girls in her family had been killed horrifically, literally by the hands of German soldiers.

I recalled the absolute apprehension and determination of the children of adoptive parents wanting to find their birth parents.

Some of the Who do you think you are? programs I have found to be rather “ho-hum” – interesting but somewhat lacking in power and passion.  But not so the heart-rending search for what exactly had happened in utter blackness long ago and faraway in Antigua and Belorussia.  Sometimes despite deep sadness or horror we just need to discover what we can find out.  We feel a deeply personal and profound bond with imprecise stories about our kith and kin, with the general facts about certain people in other times and places.

My own search has certainly been nothing as emotional as that of the two women with links to Antigua and Belorussia, but it’s been passionate just the same.

People02But it has also reminded me that my early PS, surgery, hospitalization and parenting have affected me more than many other infant PS survivors.  Most seem never to even think about their PS episode, some can’t identify or even care or want to know about “that scar”.  And others recoil at the mention of what their first weeks were like for them and their parents – like the Facebooker who asked me to delete a photo depicting the starvation that some babies suffer before they are properly diagnosed and treated.  We each manage our life stories in our own way.

My parents were people of bygone times who kept from me the details of the infant surgery I had when just 10 days old.  Before I was 6 years old, I became desperate to know what had created what I later learnt was a surgical scar, running down the middle of my young body, and how I should answer the inevitable questions of the curious.

During my growing years I picked up enough from conversations and books to understand the essence and effects of surgical work, and what pyloric stenosis was.  It didn’t take that long to learn how to avoid the inquisitive queries: I avoided most by covering up and lied away the rest.  Meanwhile I learnt what I could do to remove what I believed was a length of white string caught under my skin… the answer was of course: nothing.  Sure signs of inadequate parenting, an insecure child, an introspective nature, and (I discovered later) signs of PTSD and OCD.

A busy working and family life, plus the now understandable reticence of the then available information sources meant that between the ages of 20 and 60 I learnt little more.  But “the need to know” was kept alive by my continuing episodes of feeling embarrassed, obsessed, and self-harming because of my scar and story.

Q mark2The advent of the internet with its free, rich and growing flow of information and its potential for community-building was a major breakthrough and gift for me.  It gave me many details which I had never heard or fully understood, and which I quickly recognized as some of the missing pieces of my puzzle.

Amongst much else I learnt –

  • most of what I now know about infant PS – and that there is an adult form of this condition;
  • how infant surgery was usually done before 1987 (and still is in the case of many circumcisions);
  • that the danger of infection before the 1960s had a major impact on hospital protocols and procedures – with great effects on all concerned;
  • that trauma (another “hush-hush” subject at the time) affected many of the babies and adults of those times;
  • that PS and its surgical repair leave many with life-long problems, for some minor but for others very disruptive;
  • that many medical workers were and remain ill-equipped to understand and fully help those who seek their assistance;
  • that healing occurs in many ways and that we each seek or find our individual path; and
  • that many of my approximate contemporaries who have had early surgery and are willing to network report psychological and related difficulties very similar to mine.
  • that although my parents both died in the early 1990s without ever engaging with me about what were some obvious “issues”, I have discovered that the very little they did tell me and the main import of what I have learnt since are a perfect match!
  • that I am part of a large number of infant surgery survivors who share my passion to connect our past and present: I receive a steady stream or comments from readers who value my sharing, explaining and honesty about what I have learnt.

woman at PCI have enjoyed years of interaction with countless others who had older-times infant surgery and were able and willing to share their stories.  This blog has triggered many of these passing contacts – and a few deep and revealing friendships.  Forum and social networking sites such as Facebook, Experience Project, MedHelp, Patient, and Topix have been valuable also.  Facebook alone has more than a dozen PS Support Groups (although only a few see significant traffic) with over 700 members!

Something deeply personal which I still don’t quite understand but sense I should is a powerful motivator.  Whilst appreciating and respecting those whose problems are much larger than mine, I too remain both passionate and thankful about what I have learnt about “my story” which my parents kept from me.

I am now much better to join the dots between my past and present!

Advertisements

Reflecting on my 70th

Birthdays and anniversaries are times for celebration, and reaching “three-score years and ten” years is certainly worth a big three cheers! But they are important for reflection as well.

150926-25 sml

Renmark Reunion September 2015

Gratitude to God and to the most important people in my life over these 70 years are features I’d like to be emblematic of me.  I am still surrounded with so many loving and kind people, I have enjoyed wonderful peace and excellent health, and my contribution in several circles is still wanted and apparently appreciated.

Ten days ago Helen and I gathered to celebrate my 70th birthday with our 4 children, their spouses and our 11 beautiful grandchildren.  A wonderful 5 days . . .

October 6th is ten days after my birth-day and  marks the 70th anniversary of the life-saving surgery I had in the Netherlands.  I would not be writing this but for that day in my life!

Together with the country of my birth and background, my weary and expecting parents were struggling to emerge from the ordeal of World War 2.  And then I arrived, their long-awaited first child, but soon clearly defective: scary, uncontrollable and life-endangering vomiting (infant pyloric stenosis – “PS”).  And these were times when medical science was pretty rough and ready by today’s standards and when people didn’t dwell on what they’d rather forget.

Pic 12

Mother with me – October 1945

So October 6th marks what I now realise was the gift of a new and wonderful second start in life, but also the beginning of a life-shaping journey of exploration and discovery – outside of me and within.

Outside, my parents were unwilling or unable to answer my reasonable questions about the 10 cm scar on my belly, and this drove me to look for information elsewhere.  But until the advent of the web, this search yielded only cold textbook medical data about PS and the then 33 year old surgical fix for the condition.  And explanations of my deeper issues were nowhere to be found: there were no pointers to where these might be unearthed and no ways of identifying people who could help me to realise (as I do now) that my pain was by no means wacky.

Book coverWithin, I was tormented with private pain from the dawn of my self-consciousness until recent years.  Even now I am still working to piece my private pain-puzzle together, although the web has given me access to much information, clarification and to networking with fellow-survivors, all of which has enabled me to receive and share much healing.  Since 2012 I have blogged about my journey, and in 2014 a pediatric surgeon friend and I published a small book, in which he explained what many still regard as the elusive cause of PS and I outlined my personal experience of this condition. It so happens (in Australia at least) that October 6 falls in “Mental Health Week” – and my own story has certainly helped me to feel a sense of identity with people challenged by mental health issues.

Time changes things!  The past 70 years have taught us the value of openness in the home, the importance of both listening and speaking for healing, of collaboration in achieving goals, and (by no means least) we have learnt much about trauma.

70 years have also brought huge changes to surgical technique and to holistic care in the hospital and home.  Time seems to have done less to change the unhelpful attitudes of some in the medical profession – but that’s due to human nature being far from perfect.

What do these changes (and their lack in some respects) mean?

120327-07-WgHcThe kind of trauma symptoms I struggled with is rare among more recent PS survivors.  Their surgical scars are sometimes almost indiscernible, usually tidy and very rarely as gnarly.  Affected children’s and their parents’ questions are typically answered much more fully and sympathetically, and the children are helped to understand, “own” and even feel pride about their story.

As I see it, I have discerned this is the growth in myself.  I am indeed a survivor from a bygone era of medical practice and parenting, and my scar is an exhibit of mid-20th century surgery.  I know it’s not socially correct for a cultured older gentleman like me to proudly show off his scar as an 8 year old lad might… but I’m catching up on lost joys and enjoying it!

Infant surgery then and now

Infant surgery has seriously affected some of us whose lives were saved by it.

This is especially true of those like me who are now at the older end of life: we have been affected emotionally and psychologically despite having no conscious memories of the surgery we had so early in our lives.  Our bodies record potent trauma even when our mind cannot.  This does not seem to affect everybody but others’ stories and tell-tale signs are too similar to reject as fiction.

Surgery in the past was rather basic, especially when performed on infants and in the light of current practice. Often in the not-too-distant past no safe general anesthetic and trained pediatric (children’s) anesthetist were available: general anesthetic agents were hazardous for infants in their first two years unless a very careful and experienced anesthetist was available.

Local anesthesia affects the tissue at the operative site, making it hard to work on, so many surgeons would also exclude its use.  So the squirming baby was strapped down, and quite often given a shot of whisky or a sugar cube laced with rum to somewhat distract it.  Or a paralysing drug was injected and a breathing tube inserted.  No picnic for the baby, and it must have been tough on the operating room staff.

The hospital regime then was also “different”.  Two weeks or more in hospital was standard after an “uneventful” pyloric stenosis (“PS”) operation, and often the mother was allowed no contact for fear of infection, which still killed about 50% of PS babies post-op in UK public hospitals after WW2.  I understand my mother had to deliver breast milk daily over 15 km to the hospital for 2 weeks but was never allowed near me, let alone nurse me.  (My surgery was at 10 days so what an introduction to nursing her first baby I was for her…)

Starvation pre-op plus surgical shock plus maternal deprivation – none of it remembered of course, but it has really affected me and others of that generation long term.  Add to that: some years later, these baby-boomer and earlier parents were totally unaware and incapable of managing their own and their growing child’s developing ptsd.

Woodstock-1But hey!  Ever since Dr Conrad Ramstedt and others began publicising their newly discovered “pyloromyotomy procedure”, most of us PS babies no longer died of dehydration and starvation.  Even those who had the PS op in its early days have mostly lived to tell their tales and have often lived well.

But I am also very thankful that despite the many post-op issues reported on Facebook and other form sites, some of the old damage is no longer being inflicted today.  Infant surgery today, even in its most severe forms, is now far less traumatic for all concerned, and most hospital regimes are sensitive and aware.

“No brain, no pain”? That’s insane!

Can a baby remember trauma experienced in her or his first years?

In times past the answer was an insistent “No”.  Before about 1990 it was commonly believed that because virtually nobody can recall and describe any event from early childhood, be it happy or troubling, a baby makes and keeps no record of anything before what we can later recall and express in words.

This of course sounded very reassuring and comforting!

  • The serious mistakes some parents make when a baby is very young – no memory, no record, no damage.
  • Family, life and health dramas which a little one survives – no need to worry about it affecting baby.
  • Separation from mother, adoption, foster relationships – none of this will harm a little one.
  • Will we have our baby son circumcised “so he looks like his dad”?  “Go ahead, no worries!”
  • My baby needs life-saving surgery but anesthetising a baby is risky – “Just go ahead, she won’t really suffer.”
  • A baby’s screams under the knife upset a young theatre nurse – “Hey, he won’t remember anything.”

Evidence contrary to these soothing assurances must have been as clear and widespread as it is today.  If you dare, just check out one of the YouTube videos on what happens when an infant boy is circumcised without pain control.  Still more amazing to us today is that it was believed by many until recently that babies not only don’t remember pain – they don’t feel it!

Besides this, hospitals until recently were “holy places”, the word “holy” meaning “separated, inaccessible”.  Children under 12 were not allowed to visit, a husband couldn’t support his wife in labour, and the fear of infection meant many patients (even babies) were not visited (or touched) while in hospital.

arrogant doc4The health and medical community was fed these “no brain, no pain” mantras in class and then recited them with the absolute authority and firmness that came with their position, especially in earlier times.  Parents and patients would rarely question a doctor’s word.  Doubts, even those arising from observing the painfully obvious, were dismissed.  And doctors were only challenged by “difficult people”.

This situation was of course possible only in the simpler, more authoritarian, and much less informed times which today’s older generations remember well – but only Gen-X’ers and their seniors!

We must remember that there were few alternatives.  Pediatric medicine as a specialist field was not born until 1950, and even after that time anesthetics and pain control were often “basic” compared with today.  All anesthetics (even today) carry risk, and rendering a child under age 3 unconscious involves some additional and substantial risk factors.  In the past a baby’s surgery and pain relief were usually managed by people who did most of their work on older children and adults, so it is not surprising that general anesthesia was often avoided and that the surgery done with enough skill but often little finesse.

So the “no brain, no pain” mantras of past medical science not only suited the times but also served to help parents to cope better with a lot of the all-too-common dramas of family life, including infant surgery.

These beliefs also fitted well with another feature of those earlier times which many of the older generation may remember but still resent:

  • most parents had little or no understanding of their child’s or their own psychology;
  • children were “to be seen but not heard” and were too often “stonewalled” –“Just go and play!”
  • many parents were reticent to talk about uncomfortable things like inner feelings, painful experiences, and uncomfortable subjects.

Baby unhappy01In 1945 I had an operation when 10 days old to control pyloric stenosis, and the details of that were always kept from me. In other posts I have written about how the sad but understandable ways of the past have affected me and many others who had earlier infant surgery.  They did so in a variety of ways –

  • some were affected and/or traumatised as babies by the relative ignorance, inadequacies and failings of medical science and the hospital regime;
  • others were affected by the mantras I have discussed;
  • others again were disturbed by their parents’ inability to help them understand their story and inner being.

People like the “heroes” I have mentioned or discussed in several of the previous posts have been crucial and foundational in challenging some of the medical world’s beliefs and attitudes of the past.  They have researched the old shibboleths and shown them to be utterly wrong.  They have explained how trauma and pre-verbal memories can affect even tiny babies.  They have worked on effective therapies to manage the damage and bring healing and wholeness.

I am so thankful for these people’s skill, insight, courage and determination.  They have changed many lives very much for the better – including mine.

Pyloric stenosis – untangling the emotional baggage

Another happy birthday and another poignant anniversary of my first and very early brush with death have just passed, and this cast me into a reflective mood.  This was focussed by some delightful time I recently spent with family members.

1940s surgery looked and was different from today's

1940s surgery looked and was different from today’s

As my previous post has recounted, I had pyloric stenosis (or “PS”, a blocked stomach) soon after my birth and escaped death by starvation by having an operation when I was only 10 days old.  I’m sure the trauma affected my mother, and this in turn affected me, added to by the crude way infant surgery was often done until the 1990s, plus the maternal deprivation that was part of 1940s hospital routines and infection control.

If you have had PS and are troubled by ongoing issues you suspect or know are related, you may want to reflect along with me!  A little background will help …

Only in the 1950s did some doctors begin to specialise in pediatric (infant and child) surgery, and only much later still did this and advances in medical technology see the development of anesthetics, anesthetic management and surgical techniques that are safe for infants in their tenderest first two years.  I have posted that Dr J Everett Koop in the USA was an early pioneer in this.

Only in the late 1980s did a few brave people in the U.S. medical community dare to address the commonly believed mantra that “babies don’t feel or remember pain”.  Among them, Drs K J S Anand and P R Hickey explored the facts and then available information and challenged the established beliefs and practices.  The late Dr David Chamberlain wrote articles and books about the infant mind and memory.  And the late Dr Louis Tinnin amongst others developed therapies to help survivors of crude early surgery to recognise, manage and overcome the post-traumatic stress that could result.

In recent years I have been able to connect online with many who have been affected by old-style infant surgery like I was, and I honour and thank those researchers and doctors who have done so much to give us the present safe and usually fairly damage-free ways of treating infants who need early surgery.

Thanks to the work of the above people (and others like them) I can now understand the mysterious, unsettling, embarrassing and scary inner struggles with which I’ve had to live for most of my nearly 70 years.  Only in the last ten years has the light and help given by these heroes and spread via the internet been moving me towards healing and inner emotional peace.

Here are some of the “issues” with which I struggled –

  • People02All my life I have had an overpowering and insatiable obsession with the 10 x 3 cm scar-web on my belly and the operation it represents. I recently posted about this obsession which has troubled me in a list of ways, some private and worrying, some quite public and embarrassing.
  • For the first 20 years I was afraid of hospitals and all my life I have had passive-aggressive problems with medical people and to some extent with anyone in authority.
  • Since the dawning of my self-consciousness I have had a deep “need to know”, to understand in some detail what this strange thing on my belly was and what exactly happened to put it there. When my parents fobbed me off I went to books, libraries and bookshops, and much later there was the internet.
  • I was often upset by visitors’ curiosity about my scar, my parents’ stonewalling whenever I asked them about it and my PS story – while I overheard them talking with visitors about this page in my life!
  • Certain words and seeing certain things were triggers that made my heart jump, made me blush, and funnelled my thinking to that first medical problem and procedure I had. I have posted about some of my triggers recently.
  • Digestion problems seemed to affect me more often than others in my family.
  • It became clear to me that my mind wasn’t as good as my 4 siblings’ was, that I was less well coordinated and confident than they are, and that I was regarded by my parents and others as rather sensitive and easily put on the defensive.

Most of these frustrations were obviously linked with my first illness and surgery, and I came to suspect the last two might well be too, as I found medical reports that linked PS and its surgery (pyloromyotomy) with them.  Very early starvation damages the baby’s developing brain, including intelligence and motor coordination, and PS survivors and their parents frequently report any of quite a list of abdominal complaints, including vomiting, irritable bowels and reflux, confusion over hunger or feeling full, and discomfort to severe pain often suspected as being caused by adhesions that had developed within from the scar.

Many of my posts on this blogsite discuss these matters.  Interested readers can find them by using the “Categories” search box at the upper right of this page.

How did “family time” get me thinking?

  • During a recent reunion I enjoyed with my four siblings, we discussed our gastro-intestinal behaviour – among many other things of course, but yes, we did! We found we had remarkably similar problems with diet, GI problems and necessary food cautions.
    This does not take away my gastric challenges but puts them in a wider context: it is well-known that PS is caused by high gastric acidity and quite often both these have a hereditary element, affecting more than one baby in a family.
    So my mild gastric problems caused my PS and it seems are not its result, nor that of the surgery.
  • I continue to feel confirmed in my observation that compared with what I see of my family’s gene pool, I have reason to believe that my very early days of starvation seem to have somewhat affected my brain development. However, I also recognise that PS survivors are represented on the full range of the emotional, mental and physical spectra!
  • Especially two of my grandchildren have come to remind me very much of some of my own emotional architecture. While happy to do things in public they hate with a passion situations where they feel “exposed”: having their named called out in a school assembly, being asked to pose for a photo.  They are emotionally sensitive, and clearly “people people” but can also be so focussed (or obsessed?) that we wonder if they are at the low end of the autism spectrum.
    Seeing these kids grow up shows me that some of my “issues” seem to have been caused by a combination of some of my personality traits and unhappy (even traumatic) remembered experiences that arose from my PS scar.
  • This leaves the first three items on my list as totally or largely unexplained except by the fact that some others with PS in their past have reported similar signs of trauma: obsessions, sensitivities, passive-aggressiveness especially towards authority, and “triggers”.
    The specialists in medical science, psychiatry and counselling I highlighted above, together with others who have worked on this, are able to tell us that indicators such as the ones I have mentioned are (or can be) symptoms of PTSD. PTSD has been long recognised in a relatively small group of people (usually war veterans) but was usually brushed off as “too bad, be glad, you’re a survivor”.  Only in recent years has PTSD been taken seriously, explored and much better understood, and as a result it is now better managed and treated.

QUANTUM2The coming of the internet has made it possible for people to network and share territory they have in common.  Much that was previously ignored is now shared, explored and explained.  I have learnt so much about my lifelong discomfort with aspects of myself!  I know now that my “secret inner self” is well within the bounds of what is normal after early surgery in a now hopefully bygone age.  I no longer have to worry about being weird or unique.  Others share and understand my pain and yet have lived a pretty normal life, as I have in fact!  I have been carrying the symptoms of mild ptsd, and counselling and therapy could reduce them but will never remove them.

So I can join those of a more outgoing and confident spirit and carry and show my scar with some pride: I am alive today because I’m part of the history of surgery, I’m grateful to God that I was born at a time when I could benefit from this, and I enjoy being part of the community of PS and infant surgery survivors.

And though I have missed out on certain gifts (how I sometimes long for a quick mind and body), I’m also grateful for the gift I have to explain things clearly, simply and patiently, and that in my senior years all this has come together in my blogging and online participation in the interactions of PS survivors.

A pyloric stenosis baby

These are the very first photos of my mother with me, and 69 years later they keep touching me deeply.

Pic 12194510-1 FLVClick on the images to enlarge them. Yes, they are very grainy: they were taken just a few months after the end of World War 2: my Dad was never much of a photographer, but more to the point, my parents and their country (the Netherlands) had just been liberated from five terrible years of occupation and oppression.  But despite the obvious poverty of the photography these images capture enough.

My composed mother

Photos of a yummy mummy with her first baby are usually drenched with glowing pride, obvious health and radiant happiness.  Sadly, both these photos are somewhat different.

Despite being a devout Christian committed to a life of serving others as a Jesus-follower, Mum’s life of 28 years to this point had not been easy.

  • As a child she had sustained a head injury which left her with frequent and severe migraine headaches and later, early onset Alzheimers.
  • During the early Depression years she had left home in an idyllic small town and moved 200 km north to Amsterdam, hoping to study medicine. But her frequent headaches forced her to abandon her studies.
  • The student with whom she fell in love was a good man but also a compulsive networker and more interested in following lectures and making new friends than in finding work so that he could marry his fiancée. In later years she would still remember the nightmares she had in those years.
  • During World War 2 the Dutch witnessed ruthless Nazi destruction and atrocities, the programmed dehumanisation and then menacing removal of Jews, and the brutal suppression of Dutch dissent. In 1943 my father at last obtained a church appointment which enabled my parents to marry.  But this also meant that my Dad as a public figure in town was sought as a hostage whenever the Germans carried out reprisals for some act of the Dutch Resistance.  He survived this time but did develop TB (which we are grateful was treated without apparent damage).
  • As was normal at the time, my mother was never very open about her inner life and its stories. Not only did she not speak easily about herself; she batted away questions she found uncomfortable.
  • Early in 1945 she became pregnant with me, her first child. The joy and glow of pregnancy must have been somewhat clouded by living over 300 km from her parents and sisters, a relatively small distance today, but not in the ravaged Netherlands of 1945.
  • The day after I was born Dad wrote to his parents: “he loves sleeping and eating, in this he is like both his parents, not to mention one of his grandparents… we don’t need to tell you how much we have enjoyed and been thankful for so much good fortune and wonder, for answered prayer and dreams fulfilled!”
  • Less than a week later my parents’ firstborn was vomiting himself to death and was diagnosed as suffering from infant pyloric stenosis. On day 10 my lanky little form lay on an operating table, bundled up for warmth and strapped to a small cross to keep me still, as general anesthetic was usually regarded as too hazardous for infants under 2 years old.
  • Infection was still a huge hazard in 1940s hospitals and particularly after surgery on tiny people in an emaciated condition. This meant a standard of two weeks of post-op care in hospital, and for much of that time, isolation from family including even a nursing mother.  Mum had to express milk daily and deliver it herself to the hospital 15 km away by steam train.

These two photos were clearly taken after my return home.  As is fairly usual after pyloric stenosis is corrected, my weight and condition quickly returned to normal, and this is confirmed by the weight chart my parents sometimes showed me (but sadly, later tossed out).

On one photo my mother is uncomfortable with the bright sunshine.  Both show her as young, well and caring, but also as formal, unsmiling and preoccupied with her damaged child.  All this is how her children remember her.

The sleeping baby

On both these photos I look well but am not just asleep: this baby looks exhausted!  I can only wonder whether this was the truth or whether it just showed my parents’ lack of (or disinterest in) photographic skill!

To me these photos reflect sadness.  Under all those warm clothes was a scarred little body which reminded them every time my parents bathed or changed me of what they and I had just endured.  Scar belly01cBy the time I was allowed home, the incision wound would have healed to the point that the scabs were crispy crusty and starting to fall off.  But the wound had been sewn up with heavy and deep stitches to prevent it rupturing as I cried and strained, and in case there was more vomiting (as there often is after this operation).  These sutures would have been only recently removed, leaving longish wounds with dried blood where the threads had cut through the tender young skin.  Although the photo I have posted here is of an adult male it accurately conveys what my dear Mum had to confront many times each day.

But this violence and ugliness had also given me life – in fact one that would enjoy great length and blessing!  We can also be grateful that all wounds soon get past their unsightly worst, and most people’s scars soon fade: after a year or two the damaged tissue has changed into white or pale-pink kanji markings.  Despite this, the unevenness and lumps often remain and the incision line, especially in babies, can become disfiguringly sunken.  My scar is sometimes hardly noticeable but it can also look like hollowed pockmarks left by a shotgun blast.

As I have mentioned elsewhere, my mother seems to have struggled with how best to help her damaged son but did this in ways I have always regretted.  She stonewalled and procrastinated, promising to explain “sometime” but talking to friends within my hearing, she made a variety of clothes that sometimes framed and sometimes hid my scar, and she embroidered words based on the word “pylorus”… Clearly, she had been deeply affected by the pyloric stenosis of her first child, the hospital stay that followed, and the 1940s scar that became a kind of sacrament (or is it a “scar-ament”?).

Strangely for some, unsurprisingly to me, my gnarled midriff was something I hated and hid from public sight for many years.  Although I now feel pride in being a survivor and belong to a community of people who share my experience and understand my emotions, every time I see my body I am still flooded with mixed emotions.

Sharing some of these feelings and reflecting on my parents’ and my experiences with one of the maladies of infancy, with infant surgery and with being “damaged goods” all help me and have helped countless others among the many readers of this blog.

Infant surgery without anesthesia (1): choices have had consequences

Last week something happened that was highly significant for me and the reason for this blogsite.

On the site of my fellow-blogger Wendy Williams, a correspondent called Dean made this Comment

?????????????????????????????????????????????????????????I have for a long time known that I had PTSD and knew that I had been through an experience where I was near death, but I struggled and struggled to know where it came from.  Now I am sure.  I have had the nightmares of operation lights and surgeons standing over me with the accompanying teeth grinding and terror response along with the neurosis that accompanies these nightmares.  I couldn’t believe that people (doctors) would be so ignorant as to think that babies did not feel pain.  I started research on the web and found your site.  Now at 55 years of age I am confident of where these visions come from…

Please follow the link and read Dean’s several Comments in full.

Why are these comments so significant?

Dean reported the same key symptoms of PTSD resulting from infant pyloric stenosis surgery as Wendy has done on her blogsite.  There is just a small community of people who have not only recognized their symptoms of post-traumatic stress disorder (“PTSD”) as being caused by infant surgery, and who have also written publicly about this.

Baby unhappy01These PTSD symptoms have much in common but also differ from person to person.  My symptoms are very similar to “Mark’s” who also follows Wendy’s and my blogsites.  All four of us had surgery to remedy pyloric stenosis in very early infancy, but it seems that both Dean and Wendy have lived with an almost identical set of painful after-effects which like Mark’s and mine are clearly linked with their infant PS surgery as it was often done (at least in the USA) before the late 1980s.

If “one swallow does not make a summer”, two swallows and many similar birds must be significant!

The medical records of people of our age have long been destroyed and our parents are not only deceased but were of a generation that didn’t say much about painful experiences.  This has made it impossible to verify any details of our respective surgeries, and explains why I am so enthusiastic whenever I “meet” somebody who has experienced what I have!

Why would long-ago infant surgery leave people with lifelong PTSD ?

Several of the links to the right will take the reader to reports of infant surgery without general or local anesthesia, using curare (a paralysing drug) to immobilize the baby – which in turn required “intubation”, the insertion of a breathing tube to maintain the paralysed baby’s respiration.  During the past 25 years we have established that although babies’ immature brains cannot recall such early trauma, their bodies can carry what are called “somatic memories” of pain and harrowing experiences.

Baby crying1Is it any wonder that some of those who have been through this kind of early and body- and mind-overpowering trauma continue to carry nightmares clearly related to the operating room, times of feeling frozen in fear and helplessness with agonized teeth grinding, and a phobia for things such as people in white coats, lying down in a vulnerable situation (such as a doctor’s consulting room), and bright lights?

It is not possible to discover with 100% certainty what actual technique(s) of infant surgery traumatised people 40, 50, 60 or more years ago.  But in my next post I want to record some of the discussions held and comments made in medical journal articles of the 1930s to 1960s on the subject of using anesthetic for surgery on PS babies.  I believe this is a key issue.

Only in the late 1980s did Drs K J S Anand and P R Hickey (1987) publish the results of research into the possible effects of early infant trauma after medical procedures.  The New York Times (1987) and writings such as those of Dr David B Chamberlain (1989) and Dr Louis Tinnin have brought Dr Anand’s work to the attention of the public.

bub sick1So in the USA (at least) it was not until 1987 that the apparently common practice of not anesthetising babies for surgical procedures ranging from heart operations to male circumcisions started to become indefensible.  Hospitals and associations of medical professional reviewed and enforced their policies.  Parents were demanding to be more involved.

Up to that time it was believed by many people within and apart from the medical world that “babies don’t feel pain” and / or “babies cannot remember pain.”  It seems that such mantras were less commonly heard outside the U.S.  After all, pediatric anesthesia had become a separate discipline since the late 1940s.

Next week: how was some pediatric surgery done before 1987 and why?