Category Archives: My Story

Blogs about my struggle with having had early surgery: it was a lifesaver, but could have been handled better. And I find this is not only my story.

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!

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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!

Why are there so many kinds of scars from PS surgery?

As a boy growing up with a scar cluster front and centre on my belly, I found I had several fixations which have never really left me.

  1. I was desperate to know what caused this scar, left by pyloric stenosis (“PS”) surgery I had when just 10 days old.  Apart from my mother telling me several times that I had been “a little bit sick as a baby and a doctor had made me better” it wasn’t until much later in life that I pieced that puzzle together.
  2. I was also desperate to hide my belly from public view.  I shrank from people’s inquisitive stares and inevitable questions and felt deeply embarrassed because I couldn’t handle, let alone answer them.
  3. Whenever I saw people in beach or gym attire (and with a bare midriff) I was ravenous in my search for anyone with a scar similar to mine – but never found anybody like me in that way until in my adult life.

People02Only in recent years have I learnt that this somewhat bizarre cluster of phobias and fixations is by no means unusual for survivors of infant surgery.  As mentioned in a recent post, there are also many extroverts who totally escaped my problems – and often find them rather silly.

Obsession #3 has continued with me (and it seems with others in their more mature years).  In recent years I have seen quite a number of people with what look like being scars from PS operations, and this is largely because I have learnt that this “procedure” is done using a number of surgical techniques.  So my mind is now programmed to search for and recognize half a dozen scars!  Yes, weird and whacky!

The development of the internet has birthed several forum sites where people like me can network and break out of their feelings of isolation and self-flaggelation.  The web even allows us now to compare scars and to have many of our questions answered much more fully than my 1940s parents would ever have been able!

Recently Facebookers with an interest in their own or their child’s PS mentioned the sheer variety of scars from repairing PS, a fairly common condition remedied with a relatively simple technique.  My own research of this whole subject area enabled me to attempt an answer –

The pyloric ring muscle usually sits under and behind the right (and exit) end of the stomach, so below the right ribcage.  It can be fairly easily accessed from anywhere below the ribs and above the navel.

The navel (or umbilicus) itself is (or was once) often avoided as a point of access, especially if it hasn’t fully healed after the baby’s birth and as its folds are a haunt for germs.  The umbilical incision (“Tan Bianchi” after the surgeons who promoted it) is a semi-circle incision usually over the top of the navel, sometimes extended by one or both horizontals (making it an omega sign): through this the pylorus is worked on. The Tan Bianchi incision is now often used as it allows open access but (if done well) leaves a minimal scar.

The keyhole op (“minimal access surgery” or MAS) was introduced in the 1990s: a 5mm probe (tube or “port”) through or near the navel inflates the belly and adds light, and then two other probes (3mm) higher up allow instruments to enter and do the work on the pylorus. In recent years “single port MAS” has been introduced by which everything is done through the one port at the navel.  Special care with infection control is very important, and this technique comes with a higher number of infections, but it also leaves minimal scars and is therefore preferred by parents.  MAS requires a higher level of training and skill than open surgery, but experienced surgeons can use it with similar results and complication profiles.

The open incision was and is still the easy one for surgeons, but growing numbers of younger pediatric surgeons have now learnt the umbilical and/or MAS techniques.

Abdomen incisions1Open surgery involves cutting through layers of skin, fat, muscle, and the fine material that holds our abdominal bits and pieces in place, plus of course nerves and blood vessels.  There are several layers of muscle forming the wall of the abdomen, each running in different directions to enable them to do a variety of tasks and to add toughness.  Down the front and middle of the abdomen, running from the breastbone to the pubic region, is a strip of tough connective tissue called the “linea alba” or “white line”: it has less blood vessels and nerves and anchors the various muscle sheaths.

Conrad Ramstedt, who in 1912 pioneered and promoted the technique that is used to treat infant PS, used the median (or middle) incision down the linea alba that was and is still used for much (and especially major) abdominal surgery.  It gives good access, can be easily extended, and avoids the complex muscle layers on either side.

Other surgeons preferred to avoid this area for relatively short incisions, as the linea alba’s poor blood supply slowed healing and therefore increased the risk of wound rupture.  These doctors moved their vertical incision to the right, the “para-median” incision.

In the 1930s, two other incisions became popular for PS surgery.  Both avoided the vertical openings which it was claimed came with increased exposure of internal organs, and more wound complications.  By cutting through the several layers of muscle and repairing each separately, it was claimed that the wound was easier to control.  One of these incisions was angled just under the right ribcage, the Kocher or “gridiron” incision.  The other was transverse (“across”) and became the most popular one used for PS surgery to date.  Transverse incisions are placed wherever the surgeon likes or locates the pylorus: some are almost at navel level, other horizontal just under the ribcage, and most in between.

Reading the journal articles that advocate the writers’ incision preference has led me to conclude that a surgeon’s choice seems to depend more on their classroom or craft training than on truly decisive benefits or hazards.

The development of the umbilical and MAS techniques has occurred only since 1990, urged on by the cosmetic benefits which are usually and typically urged on conservative and technique-oriented doctors by the concerned parents of unknowing babies.

Postscript

Since writing this post I came across a website under the title of Common Abdominal Incisions.  It sets out in (what I find) fascinating detail and in generally understandable English the various considerations, benefits and hazards regarding the incisions used for many of the commonly used abdominal surgeries, and what each incision involves.  In the past I have sometimes found it necessary to “translate” the information given on a medical website, but in this case that seemed quite unnecessary.

Aware parenting after infant surgery

At the age of just 3 years, children learn to use the word “Why?”

We humans are incurably curious, we want to understand what we see and hear.

Read this recent social media post by the mother of a pyloric stenosis child –

mum-dtr talk1My son was almost 9 weeks when he had his surgery.  It took them a long time to diagnose him; he will be 6 years old in a few weeks and his scar is about 3″ long.  He’s grown over the summer and has complained a lot about his tummy hurting.  That was part of the reason I joined the group so I could find out if other PS children experienced the same thing.  He also had a hernia repaired when he was 14 months old.  The scar bothers him when he gets asked what happened, but I tell him you were really sick and needed an operation to make you better.  Mommy loves your scar.  Then he smiles and laughs and forgets about the questions.

I wonder, what is your response to this post?  “What a lovely Mommy”?  “How nice”?

This was my response to this mother –

That interaction between you and your son reminds me so much of when I was his age!

My mother and I would have times like that, and my mum would use those exact same words.  But I never could never smile and forget to ask any more questions.  And when I asked more questions, the response was always, “We’ll talk about that sometime later” – but we never did.

150414-085And so from age 5 I increasingly felt embarrassed about the scar running down the middle of my belly, and whenever I asked the questions I had I felt fobbed off by pleasantries.  This deepened a then already real phobia that would trouble me for many years.

Today we know so much more and so I’m sure you’ll be sensitive to your son’s deeper personal feelings and be able to help him.  I still wish now that my mum (long passed on) had taken the initiative several times over my growing years –
1) showing she recognised my struggle instead of telling me off for showing any sign of it,
2) telling me about her part in and feelings about my first op in detail,
3) answering any questions I still had, and
4) discussing with me how I could work on my phobia.

Your son may grow up being very different from me, of course, but believe me, I’m far from alone in what I’ve just posted here!

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.

Understanding ourselves after infant surgery trauma

Some personal experiences are hard to share.

We can relate to many of the personal experiences we hear about: by the time we reach middle age many of us have been through an illness or an accident; we have probably experienced childbirth (if not personally then as a very close and trusted family member or friend); the death of a close relative or friend also happens to everyone sooner or later.  We can identify fairly well with many such life events.

But deep trauma can be more difficult to understand.  If we have never experienced near death or serious abuse in one form or other, we can say, “Yes, I understand…”, but we don’t really to a great extent.  Those of us who have suffered deep trauma usually feel the need to find somebody else who has experienced something similar, or a counsellor who is trained to listen and help us.

In November 2014 I wrote a series of posts on professional doctors, psychiatrists and counsellors who have done ground-breaking work in helping patients and professional helpers to understand infant trauma.  Reading some of the key work of people like Drs K J S Anand and P R Hickey, the late Dr David Chamberlain, the late Dr Louis Tinnin, and others has been an “Ah!” moment of discovery and gratitude to people like me who have been affected by infant surgery (including circumcision) as that was so often practised before the 1990s, without general or even local anesthesia, using other crude, painful and invasive procedures, and with long periods of maternal deprivation.

ponderFor much of my childhood I was obsessed with a very obvious surgical scar in the middle of my belly, the result of 1945 surgery to remedy pyloric stenosis when I was just 10 days old.  From my parents’ ultra-scant comments, I soon came to understand this early episode in my life story was one they’d rather forget.  From the medical reports of the time which I’ve been able to read in recent years, I have learnt that infant surgical technique in 1945would have been basic, and it was followed by at least 2 weeks of isolation in hospital to guard against infection.

When my self-awareness awoke between the age of 5 and 6, I soon became obsessed with my scar, addicted to re-enacting what little I knew about my surgery in childish ways, and then to increasing self-harm.  It is not helpful or necessary to go into details here, but readers who have had similar problems and feel a need to find greater clarity, healing and reassurance should feel free to email me via the links at the end of other “pages” on this blog’s header.

Why I felt these deep and irresistible urges I did not understand for most of my life, but they troubled me.  I believe my parents could have helped me by (1) explaining my surgery and scar, and (2) helping, persuading, tempting and rewarding me to accept and feel proud of my story and scarred body rather than fearfully hiding it from public view.  But I also wonder whether the power of the trauma of my early surgery might have overridden anything anyone tried to do later!

VdKolkBessel 2015Last week our Australian national radio aired an interview with the US Prof. Bessel van der Kolk whose writings have recently been overviewed and quoted by my blogging colleague Wendy P Williams.  A New York Times article about Dr van der Kolk is also well worth reading.  Yet another article about van der Kolk’s work on infant trauma has been made available by those advocating an end to routine circumcision in the USA.

Dr van der Kolk’s website has links to his work, programs and publications, one of which at least is also freely available online and well worth reading.

Prof. Van der Kolk is undoubtedly correct in saying that trauma caused by events in childhood and in later life is causing a hidden epidemic of personal, family and social problems.  Only in recent years have childhood abuse and military service begun to be more widely recognised as often causing deep-seated and lasting damage.  Even now the military establishment often tries to deny or ignore the obvious damage done by PTSD.

Van der Kolk is also correct in his observation that the numbers afflicted by the trauma of childhood and later vastly outnumber those affected by the infant surgery and mass circumcisions of past years.

However, I have never yet heard of a study of the possible long-term effects of circumcision in the light of what van der Kolk and so many others (including the above trailblazers) have documented as the life-long effects of infant trauma.  Such a study may not make pleasant reading but would very quickly and certainly become “a barbeque stopper” and might even be a “game changer”.

Although Dr van der Kolk does not seem to have encompassed old-time early surgery in his work on childhood trauma, I can shout in my loudest voice that from what I have read, what he has written about the effects of childhood hurt is totally true of my journey after infant pyloric stenosis.  Thank you, Dr Bessel van der Kolk and others, for helping me to understand myself and find healing!

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.