Tag Archives: anesthesia

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

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.

Pyloric stenosis surgery – “somewhat improved”

Has the treatment of infant pyloric stenosis (“PS”) improved with the years?

Yes!  In a recent post I listed many of the clear and obvious ways it has.

Adults struggling with IBS, adhesions, or PTSD may well doubt that; any and all of these can at times be linked with their infant surgery.

The mother I read about recently must surely also doubt that much has been learnt: she was diagnosed with PTSD a few months after suffering with her newborn through several weeks of slow and shoddy diagnosis followed by “last minute, life-saving” PS surgery.

And the continuing avalanche of parents’ posts on social forum sites like Facebook and BabyCenter show this hapless mother is far from alone.

However, what I wrote in the above-mentioned post stands: it is beyond doubt that, thank God and thanks to the medical community, infant surgery including the treatment of PS has made huge progress.

Infant surgery03Last year I read the summary of a 2014 report that supports the claim that the actual surgery to remedy PS has also improved – but only marginally.  The survey evaluates the records of 791 little PS patients of a pediatric surgeon over a 35 year period (1969-2003).

Most of the results reported in the Abstract of this article (sadly, all that is publicly available) merely confirm the usual facts about PS, information that will not surprise those who know something about this condition.

  • 82% of the patients were male and 18% were female.
  • The average age (presumably at surgery) was 38 days and ranged from 7 days to 10 months.
  • Only 5% were not Caucasian.
  • 10% had a family history.
  • 15 babies (3.1%) were premature at the time of diagnosis (so in fact, many more).
  • 9% had other conditions or abnormalities.
  • 10 babies (1.2%) developed PS after surgery for another condition.
  • 13 (1.7%) were treated medically and avoided surgery.
  • All the pyloromyotomy operations were done by open surgery: the incisions used were sub-costal, transverse, or upper midline.
  • 14 babies (1.7%) had other surgical work done (presumably including herniation).
  • 87 of the operations (10%) were followed by complications: 1.1% happened during the surgery, and 9% post-operatively.
  • 2 babies died.
  • Other evaluation results showed some areas of improvement.
  • When ultrasound imaging was used, the age at diagnosis was reduced by about 10 days.
  • All the operations were done using general anesthesia and endotracheal intubation (breathing tube).
  • From 1982, precautionary antibiotics were given before surgery and this resulted in wound infections being reduced to 3.9%.

This surgeon was also responsible for correcting the inadequacy of the work of some non-pediatric surgeons, and these statistics make grim reading:

  • There were 13 such little patients, 12 of them transferred from non-pediatric surgeons.
  • These 13 accounted for 16 complications including one death.
  • 5 of the babies needed further surgery: 4 for an incomplete pyloromyotomy and the other for a perforation of the pyloric canal.

The report drew these conclusions:

  • IHPS should be considered in any vomiting infant.
  • Ultrasound examination allows earlier diagnosis.
  • Serious complications are uncommon and avoidable, but recognizable and easily corrected.
  • Surgeons who do more than 14 pyloromyotomies per annum see fewer complications.

This report (as stated above) deals only with the actual surgical treatment of PS, and not the complaints of many about the total management of this condition.  The report featured does not survey the standard of the diagnosis of PS, nor the often uninformed, sweeping, and simplistic reassurances given about the possible short- and long-term after-effects of PS and its surgical treatment, about which so many doctors and parents seem to be quite “in the dark” (or possibly in denial).

RUQ PLM-3This blogsite and the social media posts of countless parents and patients express gratitude for the survival of almost every PS baby, ever since the Ramstedt pyloromyotomy (surgical operation) rapidly became the standard treatment after 1912.

It is often remarked that the Ramstedt pyloromyotomy is one of the few surgical techniques that has continued as the standard and virtually unchanged since it was introduced.  It is relatively quick and simple to perform, and almost always immediately effective (as much as can be expected of any surgical procedure).

What the report implies but fails to acknowledge is that many older surgeons continue to perform Ramstedt’s pyloromyotomy using the old and often disfiguring open incisions.  Other recent statistics show that the new and cosmetically superior laparoscopic surgery is now used in over half of PS operations.  Understandably but sadly, many older surgeons resist mastering current best practice.

What then is clear from the material collected and reviewed in the two posts (this one and the linked post)?

  • The overall management of PS has seen huge progress.
  • The actual surgery for PS has changed little in a century, but continues to be marginally and slowly improved on.
  • There remain several areas of immediate and significant concern to PS patients and their parents which the medical community is loathe to recognise, let alone seriously tackle.

And therefore numerous PS parents and patients will continue to speak up, network – and post!

Pyloric stenosis then and now

Medical science has made huge progress in the past century.

  • If I had been born 30 years earlier my infant pyloric stenosis (“PS”) would have given my parents a horrible choice: Submit your long-awaited 10 day old firstborn son for major and horrific surgery (probably without an anesthetic) that killed around 75% of babies, many of shock, blood loss or infection – or see your little one die of thirst and starvation.
  • Modern medicine01My father suffered from mild diphtheria and tuberculosis – diseases that are now virtually unheard of in developed countries.  My family is thankful that Dad does not seem to have been seriously affected.
  • One of my grandmothers was almost blind for the last decade of her life and although my father was able to have his cataracts removed, it meant several days in hospital and wearing thick and heavy glasses for the rest of his life.  My eye problems were solved with three day-surgery procedures: a retinal detachment restored 95% of sight in that eye and my 2 cataracts were replaced by lens implants that make life much easier than having to wear glasses.
  • My mother-in-law had 4 children, then suffered post-natal depression and never recovered, dying at age 90; in this sad and dark condition she had another 5 children.  My wife and I have been able to manage our fertility and enjoy life as well as loving the family we planned.

The several PS Groups’ Pages on Facebook and other internet forum sites (e.g., BabyCenter, MedHelp, PatientUK, and Topix) make it clear that even today, the distress of having a baby with PS does not always end after the scabs from the surgery fall off.  Even in adult life, the long-term effects, although not universal, can be inescapable and extremely troublesome. But just think of the changes from what PS and its surgery were like when the older readers of this post (and their parents, most now passed on) experienced it…

  • General anesthesia, especially for a baby and even today, will always carry a small risk and may still be found to have long-term effects, but it is nevertheless always used and widely regarded as very safe.
  • breastfeeding1PS babies undergoing surgery no longer suffer maternal deprivation: the danger of infection is usually well-managed and hospital rules and staff are no longer as severe as they were.  Mother and baby only need to separate for only an hour or two.  In my case in 1945 it seems to have been some 2 weeks – and both Mum and I continued to feel it.  Today almost all babies can be held and nursed almost immediately after they recover from the operation, and most are cleared to return home within 2 – 3 days.
  • Single port pyloromyotomy scar

    Single port pyloromyotomy scar

    Surgical techniques have improved vastly.  PS surgery once involved an incision which left a scar that grew to an average of 10 cm (4 inches) and usually became quite indented and puckered.  The wound was closed with sutures that left significant additional dimple scars.  No wonder many of the generations who were disfigured by their life-saving surgery took years to come to accept their scar – if ever.  Single port laparoscopic surgery for PS has now become “best practice”: all the work is done through one port (or tube) which is inserted through the navel, and if it is well done and under the right conditions this leaves no visible scarring.

  • Parents and PSers now have access to information, networks and therapies that can help them to understand the physical long-term damage and the psychological and emotional effects that are possible after infant surgery.  When fully effective treatment healing is not possible, the availability of the above help and support will still give many benefits.

This blog, like many of the parents and adult PSers who subscribe to the online forums, wants to see PS becoming more quickly recognised more often, its immediate and long-term after-effects better understood, acknowledged and managed, and not a small number of the medical profession having a much better (more respectful, informative and honest) attitude to PS parents and patients. But I also want to take note of and celebrate the progress that has occurred in important aspects of this condition… in my next post.

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!

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 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!”