Category Archives: Researchers

Infant Surgery & PTSD – Links to Publications & Websites

Sometimes it is better not to know…

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

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

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

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

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

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

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

Inadequate pain management

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

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

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

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

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

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

 

Infant Memory

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

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

David B Chamberlain, Babies are Conscious – (file)

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

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

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

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

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

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

 

PTSD from Infant Trauma

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

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

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

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

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

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

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

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

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

 

Personal accounts

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

 

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

 

N B – this List is a work in progress

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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 in its adult forms (1)

Back in the 1950s I once overheard my parents talking about my oldest (and long deceased) uncle Fred having a stomach ulcer and an operation to deal with this.  I well remember being transfixed and “all ears”, but having been stonewalled so often, I dared not ask my parents the question on my mind.  At this time I would have been about 10 years old, and I had worked out that my prominent and hated belly scar was from an operation I’d had as a baby as I’d developed a blocked stomach (pyloric stenosis, “PS”).  I was keen to know whether my uncle Fred would be sporting a scar just like his young namesake.

When I got to see my uncle in swim-mode some 20 years later I was disappointed: his scar was small and almost invisible, far less disfiguring than mine.  Compared with infant surgery in the 1940s, abdominal surgery on adults and 20 years later was quite tidy.

Gastric ulcer01What I’ve discovered only recently is that infant PS and adult gastric ulcers and PS are often related.  All three conditions and several others have been linked with a high output of gastric acid and this is often a family trait.  So my connection with my namesake uncle (and hero) likely went further than our family realised!

The previous post sets out some of the important similarities and differences between the infant and adult forms of PS.  This post will outline two medical articles on adult PS.

The first report was published in 2010 and deals with the case of a 71 year old male who was diagnosed with PS.  The interested reader is encouraged to use the link to read the full article which has been kindly made available to the public.

In brief, it notes that adult PS is found in two forms.  It is often caused by other conditions: a long history of a mild form of the early version, an earlier stomach problem such as a gastric ulcer, or cancer.  Sometimes, as in this case, no underlying disease was found.  This 71 year old was unaware of any such factors, yet tests and surgery proved this man did indeed have a PS.  His symptoms of “abdominal distension, nausea, and vomiting” had been noticed for (just) 3 months.

It is noted that both forms of PS occur far more often in males than in females, and that they often recur in certain families.

The aim of this report is to be applauded: to raise the awareness of both forms of PS within the medical community, and especially the various ways it can appear in adults.

For those like myself and (I expect) most of our readers, the article’s value is also in its acknowledgement that the infant and adult forms of PS are related, and that the infant form does not necessarily end with a simple surgery.  Far from it, as many of us have well come to know!

The second report can thankfully also be read in full by those interested in more detail.  It outlines the very large decline in the number of adult PS sufferers needing surgery.  I have already posted about this.

downward_graph_smallThis study was undertaken by a York (UK) body gathering data on peptic ulcer disease, and based on the statistics from the 3 kinds of stomach surgery done on 4,178 adults and how often adult PS was found during these procedures.  The study ran from 1929 to 1997 and included people born between 1889 and 1959.  It found that the age at surgery fell during these years, that PS was found in 17% of the earliest patients, and just 3% in the last group, and that gastric surgery rates fell markedly (although not uniformly) during the almost 70 years under the lens.

These results show very clearly the effectiveness of modern medical treatment for stomach conditions and introduced in 1977; this includes acid-suppressing medication which reduces the formation of gastric ulcers and resultant scarring of the stomach wall and pylorus.  However, the reduction of PS numbers was even greater than the falling numbers of stomach surgery, suggesting that a number of factors are at work, including diet, medication, and the management of upper bowel disease.

Once again, the great majority of readers will be less interested in the medical messages of the report than in what it might mean for interested lay people.  What do these figures mean for you and me whose history includes PS?

  • yay1People who have had infant PS are less likely to have serious long-term effects than they might have expected some 40 years ago or earlier, thanks to better diet options and medication.
    The fact that today we can read much more about the long-term problems experienced after infant PS is a reflection of our access to the media, not of rising numbers.
  • People who have had infant PS are ever less likely to need further surgery for ongoing problems including a renewed stomach blockage. We need to be aware that for some of us these problems are significant, testing, and often interminable.
    The report states what many have found (as I have read), that surgical responses to such problems are not only severe but also likely to be ineffective in the longer term.
  • Peptic ulcer disease continues today but it now very rarely results in PS.

So – generally good news for the PS-aware community!  My next post will review several other medical articles on adult PS.

“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.

Recognising and treating the pain of long-ago infant surgery

Early this year saw the passing of someone I have never met but whose work has formed a very important landmark in my life, one I would not like to do without.

Dr Louis Tinnin

Dr Louis Tinnin

Dr Louis Tinnin was an American psychiatrist, therapist, medical school professor and reformer of the care of those affected by mental illness and trauma.  He died of congestive heart failure last February at the age of almost 82 years.  Interested readers can read an obituary online.

In 1992 Lou Tinnin began to research new approaches to the healing of trauma sufferers, and four years later, now retired, he set up the Trauma Recovery Institute (TRI) with his wife Linda Gantt.  This was a clinic based on his findings and new therapies.  In 2006 the TRI was closed and the two set up Intensive Trauma Therapy (ITT), an institute committed to the research of trauma, to its treatment and to training therapists.  Lou and Linda became known as “Ma and Pa Trauma”.

I have posted about Dr Tinnin on this blogsite several times in recent years.  For the countless people like me who have been affected by trauma but are unable to benefit directly from the ITT’s programs, the ITT’s website has been very informative and generous, and it was linked to Dr Lou’s blog – which I’m very grateful is still online.

This blogsite is not a large “read” but is a “must see” for anyone who has had infant surgery, especially if this was before 1990, and if they struggle with mystery symptoms which may have resulted from trauma.

Wendy P Williams is my blogging partner on the effects of infant surgery and the treatment of trauma-caused dis-ease; she has also posted a tribute to Dr Tinnin and it is well-worth reading.

How have I been helped by Dr Tinnin’s work?

Like many others, I developed infant pyloric stenosis (a form of stomach blockage) and had surgery, in my case just 10 days after my birth in 1945.  My parents must have been so traumatised by this that they would never talk about it to me.  Much infant surgery was shockingly crude before the transformational work and writing of Dr K J S Anand in the later 1980s about which I wrote (again) in my previous post.

Anesthetising under 2 year olds was especially hazardous before the advent of current materials and methods, and so doctors were taught and spread the mantra that “babies don’t feel or remember pain”.  It is now known that this rough-and ready surgery is indeed not remembered by the conscious memory, but is recorded as trauma by the sub-conscious or body-memory – in another way and by another part of the brain.

Added to that early operation, I was affected by some 2 weeks of maternal deprivation during the standard recovery period in hospital when mother and babe were kept separated to minimise the risk of infection, and by my growing up with my parents unable or unwilling to help me with my internal turmoil.

How this kind of trauma affects people in their growing and adult years is remarkably typical, and deeply troubling.  I experienced that.  Before the internet made it possible to share stories and compare notes, I and those like me were left to ourselves in isolation, feeling “different”, troubled, even wondering if we were crazy.

1          Dr Louis Tinnin’s blogsite tells of his “search for tell-tale characteristics of adult victims of infant surgery without anesthesia”.  Here at long, long last was a medical doctor who
(a) did not deny the past practice of infant surgery without anesthesia,
(b) described exactly all those troubling feelings and weird hang-ups with which I had struggled for most of my life, and
(c) gave hope: there were therapies, treatments and places where people like me could find a way forward.

2          Dr Louis Tinnin’s blogsite also shows very clearly how he made himself accessible to people like me.  Just look at the 75 comments (to date) below his key post.  His patience, humility and faithfulness in responding to the questions and comments I and others like me had was truly exceptional, in fact unique!  As mentioned in my previous post, in recent years several people have shed valuable light on recovering from old-style and crude infant surgery, but only Lou Tinnin has made himself so available.

Thank you, Lou Tinnin!  We miss you but you have left a legacy that will not be soon forgotten.

Minimising the pain of infant surgery

“Twenty-five years ago, when Kanwaljeet Anand was a medical resident in a neonatal intensive care unit, his tiny patients, many of them preterm infants, were often wheeled out of the ward and into an operating room.  He soon learned what to expect on their return.  The babies came back in terrible shape: their skin was gray, their breathing shallow, their pulses weak.  Anand spent hours stabilizing their vital signs, increasing their oxygen supply and administering insulin to balance their blood sugar.”

Anand KJS 2014Hickey Paul R 2014The previous post here mentioned Drs K J S Anand and Paul R Hickey, who came to prominence in 1987 by exposing the fact that much infant surgery to that time was being done without sufficient or any pain relief because of the often-heard and widely-held mantra that “fetuses and babies don’t feel or remember pain”.

In a research report in the leading New England Journal of Medicine these men told of the scientific work and findings that had led them to expose this fallacy.  The distinguished New York Times promptly publicised Dr Anand’s work in 1987 and several more times in later years.  A quarter century later, articles in the magazine USA Today in 2005 and in 2008 The New York Times again helped give the Drs Anand and Hickey’s world-wide publicity.  The quotation above is from the latter article; here is another excerpt from journalist Anne Murphy Paul’s February 2008 NYT feature, The First Ache:

“When the surgeon lowered his scalpel to the 25-week-old fetus, [anesthesiologist] Paschall saw the tiny figure recoil in what looked to him like pain.  A few months later, he watched another fetus, this one 23 weeks old, flinch at the touch of the instrument.  That was enough for Paschall.  In consultation with the hospital’s pediatric pain specialist, ‘I tremendously upped the dose of anesthetic to make sure that wouldn’t happen again,’ he says.  In the more than 200 operations he has assisted in since then, not a single fetus has drawn back from the knife.”

The Just Facts website gives a factual summary of the current knowledge of when and how we humans begin to sense and remember pain – starting not in our first years but much, much earlier, in the first months after our conception.  Fetal or pre-natal surgery has become possible for a list of congenital conditions including spina bifida, tumours, and heart defects which can threaten a newborn’s hold on life or its quality.  The proof that foetuses feel pain has clear implications for pre-natal surgery and other medical practices.  And, we might argue, how much more so for newborn infants.

This quotation from the website makes one wonder why the medical world has denied the reality of pre-natal and infant pain for so long:

“Physicians know that foetuses feel pain … because [among other things]: ‘Nerves connecting the spinal cord to peripheral structures have developed between six to eight weeks.  Adverse reactions to stimuli are observed between eight and 10 weeks…. You can tell by the contours on their faces that aborted foetuses feel pain.’”

The ground-breaking study of Drs Anand and Hickey has had far-reaching consequences since 1987.

  • The September 1987 issue of the USA-based Pediatrics journal posted its revision of the policies and protocol of US pediatricians. However, I have noticed that an American Society of Anesthiologists overview of the history of pediatric anesthesia in the USA published in 2011 made many references to major and significant changes in this field but no mention of the landmark work of Dr Anand and others, of the major revision of their policy and practice, nor of the opposition to these changes in some quarters!
  • Baby anesth01Change there has been nevertheless, supported by the growing recognition that pediatric surgery and anesthesia are indeed specialist disciplines, and by the development of safer drugs and management of their use. Crudely performed infant surgery and minimal pain control of medical procedures on infants are increasingly regarded as unacceptable and should become increasingly rare.  The incidence of long-term trauma effects will also be greatly reduced.
  • Dr Anand’s work is part of a growing and worldwide recognition of the trauma that old-style infant surgery could cause. In the previous post I mentioned other specialists in the fields of medicine, psychiatry, clinical psychology and child development who have contributed greatly to this recognition and thus also to its management and treatment.  In coming posts I plan to review the contributions of such people.

Those who have needed infant surgery (and even those subjected to elective infant circumcision) and their distressed parents owe Drs Anand and Hickey and their like a huge debt of gratitude.  As someone who had rather basic pyloric stenosis surgery back in 1945, I have certainly learnt much and been hugely helped in my own self-understanding and healing from the long-term effects of my infant surgery.

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.