Tag Archives: K J S Anand

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

Advertisements

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!

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.

Pyloric stenosis surgery’s possible long-term effects

One of the things that so often angers me as a survivor of infant pyloric stenosis (“PS”) is a key assurance that doctors so often give the parents of these babies (as reported by them) and so common on information websites –

Superman MD1“PS and the surgery for this condition have no long-term effects.”

If only it were true!

While this is promise may be true for the majority of sufferers (and please note: “may be true”), it is at least a gross generalisation.

The facts are –

  1. Web forums such as Patient UK and Topix, several blogs devoted to this and related subjects (see the Blogroll to the right), and online social pages such as Facebook include people’s accounts of unhappy experiences.
  2. In 17 years of researching this subject area online, I have not found even one substantial medical research report on the long-term effects of PS and the pyloromyotomy (PS surgery).  There have been several small and narrow studies based (say) on 10-15 years of following-up those having surgery in a particular hospital, but many of the problems people have are much more long-term and yet seem to be linked with the condition and/or operation.
  3. It is significant that my 2011 post on this topic is the 6th most read on this site.  A total of over 50,000 visits hardly represents the majority of the world’s PS people – but it’s not a trivial sample either.  More than half of my 160 posts to date have given significant attention to this subject: interested readers can find them (and their titles) by clicking on the “long-term effects” tag to the right.  These 86 posts include some written about my own struggle with the long-term effects of PS and the operation I had in 1945.

A post I wrote recently surveyed much of this subject, under several sub-headings.  This post will restrict itself to a somewhat more personal “take” of how others and I have been affected by PS.

Adhesions

As mentioned in recent posts, post-operative adhesions may affect seriously only a small proportion of those who have had abdominal (and other) surgery. I have corresponded with survivors who are afflicted with adhesions and I have found their stories heart-rending.  Everyone develops adhesions after PS surgery, but if they trouble you, the pain, complications, untreatability, side effects and uncertainties are almost always never-ending.

So why does the medical profession dismiss the documented and significant risk of adhesions as “a minor risk” when in most cases PS surgery can be avoided?  Why aren’t parents empowered to understand and work through the facts and make their own choice?  Why do information sites and powerful medical staff so often and/or effectively present surgery as the only real choice?

Post-traumatic stress disorder

PTSD is another area of known risk that is shrugged off by the medical establishment (including its training, practice, policy, research, publications, administration, etc).

PI know and am grateful that much more is known and done about PTSD today than in even the fairly recent past.  But knowledge does not nearly always translate into knowledge-based practice, especially when any degree of self-interest is involved.

In Australia we plan to spend 4x as much on the centenary of a World War I conflict (Gallipoli) as we’ll spend over the same 4 year  period on the support and rehabilitation of our military who have returned home from recent scenes of conflict with PTSD.  In some countries and circles, male and female circumcision are still routinely or commonly practised, both with and without analgesia (pain control).

Even when parents follow this practice for religious or family tradition reasons, it is inexcusable to dismiss the use of pain management.  To many outside the USA, it seems there may well be a link between the prominence of emotional and physical violence in US society and the prevalence of male circumcision.  Who can know how much depression, home and public violence, suicide and other signs of dysfunction are the result of PTSD recognized or unrecognized as caused by infant surgery?

It is not hard to trace the link between my PS surgery in 1945 and the relatively mild PTSD that has dogged me for much of my life.  Most infant surgery past and present causes a lot of trauma:
– the condition itself and
– the all-too-frequent effects of tardy diagnosis,
– the desperate needle-sticking and perhaps a cut-down to establish an IV line,
– awake intubation,
– separation from parents,
– pain and
– hospitalization.
To this we must add the relayed effect of what most parents tell us was their most traumatic experience ever.

Until the late 20th century, most of these factors were magnified: especially the maternal separation and hospitalization lasted for weeks and sometimes months.  To this we must add: awake surgery with a paralysing drug and intubation, often without even local pain relief and the “comfort” of a sugar cube laced with alcohol.

All this would not matter if we could still maintain today that “babies do not really feel and certainly don’t remember pain” – as many did until the 1990s.  But in 1987 Dr Anand proved that to be nothing more than wishful thinking, and much has changed since then – but far from everything that needs to change.

Again: how can doctors today maintain that the surgical remedy for PS is free of long-term effects?  Why aren’t the issues around this condition and the surgery considered responsibly and parents given the missing facts?

My personal story

ponderNot for a moment have I ever thought that everybody who has had PS and/or infant surgery will have struggled as I have.  For many years I dealt with my troubles alone, but with the coming of the internet I have been able to link up with and learn from others with the same past – and all kinds of stories of their personal journeys.

Like some and unlike others I grew up in a secret world of –

  • self-obsession (I’m sure I wore out a few mirrors and certainly wasted loads of time),
  • self-injuring (I learnt a lot and am thankful I did myself no lasting harm), and
  • searching libraries for anything to explain my scar and what caused it.
  • I discovered that I was fearful of especially doctors but also of anyone I regarded as in authority, and became passive-aggressive, internalising my anger.
  • Although I have functioned quite well in my work and relationships I am also known as the sole reserved, introverted reclusive in my immediate family of seven and even my extended family.
  • I love the water but at the pool and beach I never felt able to relax and enjoy myself except actually in the water.  For many years when out of the water I would keep my arms tightly folded to hide my scar from curious eyes and tug my shorts or swimmers up to my chest, forever annoying my mother who kept reminding me that this looked ridiculous – which I didn’t really care about as much as…
  • I lied, denied and pleaded ignorance when people did ask me what “that” was on my belly or what my scar was from.  I avoided phys-ed classes at school, sports and overnight camps which involved changing or showering in public, and my face blushed and heart raced whenever I heard any of a short but telling list of words.

way-forward-signIn one of my earliest posts I wrote at greater length about how I feel PS and my operation have affected my life. Whilst I have learnt that I’m not typical it’s also been reassuring to discover that I am not unique and a freak.  This is just one of the reason I urge parents considering surgery:

“Spare the knife and don’t spoil your child!”

And to any PS survivor “with issues” I say:

“Shit happens, but don’t let this spoil your life!”

When infant surgery causes ongoing trouble (3) – signs of PTSD

If you had surgery as a baby before the 1990s, it is quite possible this has resulted in undiagnosed post-traumatic stress disorder (PTSD), with its clear symptoms probably undiagnosed.  The general belief that babies don’t feel or remember pain was conclusively challenged in 1987 and thereafter gradually abandoned (see my previous post).  Until this research was published much infant surgery included the use of a paralysing drug to keep a baby still but it gave the baby no general anesthetic because of its hazards.  Some local numbing or a sugar cube was all the infant was deemed to need.

PHowever, the symptoms of PTSD caused by infant surgery may be hard to diagnose.

Problem #1: Very few if any of us have conscious memories of our first years.
Problem #2: It has been established that a traumatic event of even very early infancy will affect the body (“somatic memory”) for life in ways similar to how conscious memories affect us.
Problem #3: Some of the signs of PTSD are similar to certain character traits.

So diagnosis takes special care, awareness and thoroughness.

The work and therapy of Dr Louis Tinnin is very important in this regard: his post on infant surgery is a “must read”, together with the lengthy discussion that follows it.  This is Dr Tinnin’s paragraph on the possible symptoms of PTSD after infant surgery –

Adult survivors report life-long symptoms of anxiety (constant nervousness and spells of terror or panic), hostility (temper outbursts and urges to smash or break things), depression, self-consciousness, distrust of others, and a high vulnerability to stress.  The life-long aspect of these symptoms leads to the faulty clinical perception that they are personality disorders instead of recognizing them as persisting reactions first elicited by the brutal surgery.  That recognition opens the way to curative treatment of the adult survivor.

He then adds 10 diagnostic questions –

1)      Did you have an infant operation before 1987?  If so, what was it?

2)      How old were you then and how old are you now?

3)      Do you feel it has affected you over the course of your life constantly, only at times, or not at all?

4)      How would you describe your symptoms or if no evident symptoms then your quality of life in general?

5)      Had you connected the operation with your symptoms and if so how did you make that determination?

6)      How long have you been aware of this connection?  If not aware have you suspected there was something deeper at work in your life that you did not understand?

7)      Have you sought treatment and if so what kind?  How did you feel about its effectiveness?

8)      Was the operation ever discussed with you, as a child, as an adult?  What importance did your parents or caregivers place on its possible long-term effects if any?

9)      Have you ever considered suicide?

10)  Do you believe your life can improve with proper treatment?

In a Comment on this post, one of the people greatly affected by his early surgery for pyloric stenosis (PS) “fleshed out” Dr Tinnin’s information with his own experience –

  1. ponderWondering “why”.  Why did they hurt me?  Why did they keep me away from my mother and father?  Did I do something wrong which caused me to be punished?
  2. The last question has led me to blame myself and conclude that there must be something wrong with me.  Otherwise, they would not have tortured me.
  3. Extreme sensitivity to criticism.
  4. Fear of abandonment.
  5. Heightened fear of death and all things associated with it like hospitals, doctors, nursing homes.
  6. Desire to hide or disappear in stressful situations and fantasies of invisibility – in hopes I can escape notice by those who wish to do me harm.
  7. Withdrawal tendencies, especially in crowded rooms.
  8. Introversion.
  9. Difficulty with small talk, initiating conversations.
  10. Submission to authority figures.

I have found it unusually difficult to self-diagnose.  We need to be involved in another’s diagnosis of our personal health or other problems, but we need somebody else who knows us well and knows their subject well to walk with us in diagnosing PTSD after early surgery.  Allow me to reflect personally.

I must answer almost all of Dr Tinnin’s 10 Questions with my “Yes!”

The same is true of 10 points which the doctor’s Comment-poster has listed.

But ticking these two lists is not necessarily conclusive, as the 10 questions and fears are fairly common also among people who have not had old-style surgery in their infancy.

And to make matters still more complicated, I have a grandson who is developing more than a few of the same challenges and has been diagnosed with Asperger’s Syndrome in the Autism spectrum of disorders (ASD).  And I recognize myself in many of my grandson’s issues.

However, we must add to this that I have found several websites and forum discussions which suspect some link between PS and ASD, and it is known that children with ASD can often largely overcome or manage their symptoms when given loving and sensitive care and guidance through their growing years.

So where do I think I stand?

PS is always recognised as being multi-factorial: it may be caused by one or more of genetic, maternal, biochemical and environmental factors – and quite probably this list should be longer.  I suspect that my personality and life challenges are similarly rooted in several aspects of who I am and what has happened to me, including not least that early and rather rocky time when I developed PS and probably had some fairly rough surgery and after-care.

It would be helpful to hear from others who had a similar bumpy start to life and can also find themselves in the two lists I have quoted above.

Infant surgery without anesthesia (3): choices have had consequences

The previous two posts have explained the three ways in which surgery has been done on babies during the past century.  In brief, babies were worked on using general or local anesthesia – and also using no pain control at all.

The effect of infant surgery without any anesthesia on those patients in later life can be severe, lifelong, and even life threatening: the evidence of this is all over this blogsite – by way of readers’ Comments and links to academic reports.

The work and report of Drs K J S Anand and P R Hickey (1987) were crucial in making this terrible practice and resultant damage abundantly clear.  These men’s findings started a major (and still continuing) change in public attitudes to infant surgery without anesthesia, ranging from circumcisions to cardio-thoracic procedures.

The medical professions concerned have also changed their policies and attitudes, sometimes (it seems) under duress.  The available literature suggests that the practice of pediatric surgery in the USA may have been at the forefront and most influential in promoting the convenient and wishful fantasy that “babies do not feel or remember pain”.

How much have practices around infant “procedures” and surgery actually changed?

As stated, here has been significant change at the formal, official level.  Online we can find many reports and postings reflecting hospitals and associations of anesthetic and pediatric specialists that have revised their protocols, policies and (one hopes) their procedures.

Old Doctor1However, also online are far too many mentions of the old attitudes and ways continuing.  It may be that it’s only the “dinosaurs” of the medical profession who are guilty of this: doctors well past retirement age, unwilling or unable to update their methods, but in blind love with their life’s work and/or buoyed up by naively grateful patients.  I have heard and read too many stories about such people.
(I write this as one who during my professional life strove to keep my work “state of the art”, and then “moved aside” on my 65th birthday because I believed my work responsibilities required this.)

It seems also that many of the surgeons persisting with outdated practices are being “sheltered” by small local hospitals – of which there are many.  There can be a clear co-dependency among those interested in their financial and professional well-being rather than referring their youngest patients to more expert and specialist centres.

This blog is dedicated to informing, networking and reassuring those patients and parents who have been troubled by infant surgery.  My own experience with the effects of a 1945 pyloric stenosis operation (which was a lifesaver, but…) has motivated me to compare notes with others who have experienced something quite or exactly similar to what I have.

Below are some of the quite recent and deeply troubling comments about the present practice of infant surgery which I have gleaned from the web.  Read them and judge for yourself.

Hospital small1Dr Rae Brown wrote 21 August 2009 –
The surgical treatment of patients with pyloric stenosis is straight forward; the anesthetic management is not.  Infants still die in the United States because of attempts to manage cases in medical centers that have little to no experience with newborns.  This is usually because a surgeon feels that they can take care of a child but doesn’t consider the other health care professionals involved in the babies management.  This case should only be done in centers that have substantial experience with babies and especially anesthesiologists that take care of infants as a regular part of their practice.

Dr Jeffrey T Jung wrote in December 2010 –
Many hospitals still do circumcisions without local anesthesia, instead tying down the baby’s limbs and cutting with a scissors — or worse, strangulating off the offending tissue with a piece of string (ouch!).  Babies needing surgery for pyloric stenosis are often intubated ‘awake’ – which anyone who understands intubation knows is not a pleasant experience.  Until a couple of decades ago, babies underwent surgery on the heart–including splitting the sternum or breaking ribs – with only a paralyzing agent, for fear that babies wouldn’t tolerate narcotics or anesthesia.

A 1988 report on infant PS operations in the UK stated –
One patient underwent operation under local anaesthesia for religious reasons, but the remainder had general anaesthesia with endotracheal intubation.
Infants were extubated when fully awake.  Opiate analgesics were not prescribed because infants of less than 46 weeks’ gestational age (full term plus six weeks) have an appreciable risk of postoperative apnoea…
A modification of Robertson’s gridiron incision was used in all but the infant having the operation under local anaesthesia.

Finally, a note to the parents of babies who need surgery.

baby trusting1Often the surgery that is advised is life-saving – but not always.  Most pyloric stenosis (“PS”) operations today are done competently – but they may also be unnecessary.  Check the “Categories” box to the right if you’d like to know more about the alternative medical treatment.

But whatever you decide, consider your baby’s future emotional wellbeing by informing yourself of the options – and the possibility of your own child being treated without general anesthesia.