Category Archives: PTSD

Post traumatic stress disorder affects not only children and adults. We know now that babies can be affected by trauma which their brain cannot yet record but their body can (“somatic memory”).

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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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!

Is there a link between infant PS and later abdominal trouble?

Most General Practitioners (GPs) will reject any link out of hand.  Some GPs have even been known to ask their patient (or client) what “PS” (pyloric stenosis) is.

We can be sure that every medical textbook and training includes at least a page or part of a lecture on PS, which is the most common reason for non-elective surgery on infants in their first months and years.  But who can blame a medical student for not remembering everything they are told and read over six or more packed years?

However, the almost universal denial of a link between PS and later abdominal trouble is more than a nuisance.  It may be “textbook” but it misleads and misinforms the parents of a PS baby and most will continue with this false assurance until they discover the truth – usually only after much frustration.  As for PS survivors, they are the immediate and personal subjects of the widespread ignorance and misinformation about the possible long-term gastric and other problems that can come with PS and/or its surgery.

113This kind of trouble does not seem to afflict the majority of PS survivors, and may only affect a small minority.  But considering PS affects between 2 and 5 in every 1,000 babies, that is still a lot of people!  I have on file hundreds of stories just from those who have told something of their story on Facebook’s several PS Group pages – and elsewhere!  There are several other social forum sites carrying the stories of worried or unhappy PSers.

The pattern is typically like this:

  • The “survivors” endure some years of increasingly nagging (though not mortal) discomfort, pain and frustration with real but unidentified gastric and/or other abdominal symptoms (tightness, pain, bloating, irritable bowels, dietary misbehaviour, vomiting, etc.
  • Their doctors seem loathe to acknowledge these symptoms, giving their patients medication or dietary advice.
  • There is outright rejection of PS possibly having long-term consequences – the high acidity of PS, damage to the gastric passage and even the lungs (from ingested vomit), post-surgical adhesions, and trauma after old-style infant surgery and hospitalization are just some of the hazards which should be considered.  All of these possible conditions have been documented and reported in medical literature.
  • It seems that often the “survivor” discovers the link between their malady and their PS past only when they stumble onto an online forum where they find they are not alone.

Sadly, because PS-related problems are low on the medical world’s radar for several reasons, there is virtually no interest in researching them.  Hence the medical juggernaut rolls on in rejection and ignorance.  However, there have been a few small studies and (from what I have found) just one very large study that have confirmed that infant PS is not always free of long-term consequences.

If the reader is interested to trawl through enough pages of stories on this blog and on the screens of the largest three of Facebook’s PS Groups, they will also find reports that several GI specialists have (usually after many, many consultations) admitted to a connection, agreed on tests, and arrived at better advice treatment.

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.

Pain01Lay reading of medical journals and even a basic understanding of how our gut and PS work tell us there certainly can be a link.  More specifically, the high acid that causes PS continues with the patient, raising the risk of related issues including reflux, irritable bowels, esophageal damage, and gastric ulcers and cancer.  Reduced gastric emptying could well be caused by damage to the vagus nerve or adhesions from the operation constricting the working of the stomach and gall bladder, whilst the throat / voice problems are likely caused by erosion / scarring of the esophagus caused by reflux, high acid, or lack of care with the breathing tube during surgery.

Of course anyone with any such symptoms would need a proper diagnosis but it’s not hard for even lay people to understand the links.  With countless numbers from my Facebook networks, I plead with the medical profession, parents, patients and the family and friends of PS survivors to recognise and help spread the awareness of this quite common condition and its possible ramifications.

And if what you the reader has learnt here “rings a bell” … I sincerely hope that you have been greatly encouraged to pursue your problem and get it sorted out.

Coming out – about our scars after infant surgery

Many of us feel most comfortable conforming, not drawing attention to ourselves.  Many others pride themselves in being different, “standing out from the pack”.  I envy them!

I very much belong to the first lot: I totally hated my 9 cm (3½”) scar from a pyloric stenosis operation back in 1945 when I was just 10 days old.  My scar shame was quite apart from the symptoms of post-traumatic stress which (as far as I can discover) resulted from the story of my first illness.

This deeply felt sensitivity about my scar was probably not unconnected with the psychological effects on me of the surgery, but it mushroomed when I became conscious of wearing a scar that is “front and centre” and very obvious in the bath and at the beach.  Asking my parents about it clearly unsettled them, further intensifying my own discomfort.

The internet has shown me that my obsessive sense of shame is far from universal among those who have needed infant surgery, and that many flaunt their scar with pride and think up fantastic stories about having been stabbed, or attacked by a shark.

But I have also been greatly comforted to learn that many have felt as I did:  my emotions and inner pain are hardly freakish or unique.

yay1One of the things that has helped me to find peace with myself is the number of people who have used the web to share their own struggle towards the self-acceptance of their disability or disfigurement.  Often their life was much more difficult and their blemish more severe than mine

I have also joined the many who have also gone online to “objectify” their scar: to post a photo of it or of them wearing it in public, empowering us to break through what is very much a self-imposed complex and to see ourselves as others do.

Again and again the posts and comments on social networking sites like Facebook express gratitude at the opportunity to network and share something that in the past was all too often a lonely and endless ache.

For those interested, here are some links to blogs that others and I have found liberating –

Angella Dykstra – Scarred for life

David Fetterman’s story about Father and son

Maggie Van Buskirk’s story

Nathan Long – Forced to fast for peace

Enjoy!  Grow!  Share!

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!

Are Pyloric Stenosis problems history yet?

In my previous post I explored the horrible old mantra that “babies have no brain and therefore will not feel or remember pain”.

When I was just 10 days old I had my first surgical operation, for a pyloric stenosis (“PS”, a blockage at the stomach’s outlet) which occurs fairly commonly in between 2 and 5 baby boys and about one girl in every 1,000.  In 1945 (and for several decades after this) the trauma easily caused by what is today regarded as simple surgery was not understood –

  • the operation was often done without a general anesthetic, sometimes even without local pain control because of the major hazards and possible side-effects of each;
  • hospital stays after such an operation were routinely 2 weeks;
  • in hospital sick and recovering babies were routinely separated from their mother to reduce the danger of infection and they were fed on bottled milk;
  • the effects of these practices on the infant’s parents were usually discounted and masked by a code of silence, which often made them even more toxic in the long-term on parent and patient.
  • What I have outlined here has had a lifelong effect on me, and most likely also my parents, although they maintained their silence to their deaths many years ago.

Nerdy MD2One effect of this on me has been a lifelong and obsessive interest in PS and infant surgery.  In recent years what I have learnt and continue to learn has been channelled into teaching and advocacy for the a list of “issues” around these two subjects –

  • What is PS and how was it treated yesterday and is it treated today?
  • Can surgery for infant PS be avoided?
  • How can PS and its surgery affect the infant’s parents?
  • How can they affect the patient in the immediate and long-term?
  • Why is the diagnosis of PS often so frustratingly delayed and what can be done about this?
  • How can parents deal with the problems babies frequently have after the operation?
  • How can PS survivors deal with some remarkably similar problems that all-too-often arise in adult life?
  • Do babies feel and remember pain and other trauma of their pre-verbal stage of life?
  • What are the symptoms of PTSD that seem linked to early infant surgery, and what therapies and programs are available to those affected?
  • Since gaining access to the internet in 1997, I have learnt much about all the “issues” listed, from websites, blogs, social forums, and some valuable personal interactions and friendships that have resulted.

In 2015 I plan to continue sharing and interacting with the PS community via this blog, as well as on several social forums, notably the various Facebook Groups committed to offering support, sharing information and raising awareness about PS.

SeatonHarlan age 4 Fb 140502-2PS survivors and their parents on Facebook sometimes express their profound gratitude that some of the issues I have listed above are now largely becoming consigned to the historical record.

Greatly improved support for parents, good pain management, new surgical techniques that much reduce disfigurement, and short hospital stays are now standard.  Parents may also remark that there seems to be a slowly growing change in the medical professions’ awareness of PS and their attitude to PS parents: less professional paternalism, arrogance and conceit.  Changing social attitudes and better education in medical school seems to be germane to this.

However, it is also quite clear that we are far from being able to “move on” and go fishing!