Category Archives: Trauma

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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Three responses to infant surgery

Infant surgery does different things to different people.

This post introduces readers to three men whose infant surgery recently prompted them to go public, each in his own way.

yay1Dave Outred went online to express his joy and gratitude for his full and satisfying life, apparently unaffected by the rather messy start to life he had.  After developing pyloric stenosis (“PS”), he was operated on twice in a London hospital in 1955 to remedy this rather common condition when he was about 6 weeks old: when it became clear that the first “procedure” had not dealt with his stomach blockage, it was repeated a day or two later, leaving him with two rather large and untidy scars.

But, he wrote on Facebook (to a “closed” Group) –

I say, be proud of your scars because you are a survivor!  I have had a great life: played sports for my town as a school boy, enjoyed camping and an outdoor life with the scouts, been married twice [currently 31 years], followed my football [soccer] team through good years and bad, semi-retired at 48 after many years of working 6 and 7 day weeks.  Lots of friends and a full life.  Recovery from P.S. is the start of a life you may never have had.

ButchBee02aJay Jacobs’ infant surgery was to deal with volvulus, a twisting of the bowels that like PS blocks the passage of food but can also quickly cut off the blood supply, causing gangrene and death of the affected intestines.  Perhaps because he was not expected to live, perhaps because cosmetic concerns rated rather lowly in 1957, perhaps because of his earlier weight problem, he has also been left with a very large and sunken scar.

Jay Jacobs found it harder than Dave Outred to feel accepting and confident about his disfiguring scar and count his blessings… until he found his niche.  Jay Jacobs always had a weight problem but in his later adult years he succeeded in beating this: he found diets and fitness programs that worked for him, participated in the Biggest Loser program on TV, and developed and promoted his discoveries, weight-loss and new-found wellness to become a successful entrepreneur!

Quite likely because of his accomplishments, he was also persuaded to rise above his negativity about his abdominal scar.  He appeared “topless” on TV and online, and wrote about his former “shame” and new-found confidence about his torso and story.

Henry Fox like Dave Outred also had PS and early surgery to remedy it.

Genes baby1It left him with a lifelong passion for the importance of medical research.  Many PSers realise that up to about a century ago, the diagnosis of infant PS was almost always a death sentence: the surgical remedies then on offer were so crude and horrific and so rarely successful that most parents preferred to see their little one simply expire.

Henry Fox knew this and also that there are still many conditions of infancy that although less common than PS need research funds and workers.  He wrote –

Owing to the type of research now carried out by Action Medical Research, I was able to undergo a small operation to rectify this and am now able to make the most of my ability to digest properly…!
Since then, Action Medical Research together with its most famous sponsor, Paddington Bear, have stayed very close to my heart.  I spent several days as a young child attending Action Medical Research’s Paddington Bear tea parties, over-indulging in a fair few marmalade sandwiches to help raise funds for their life-saving research!!  This association has stayed with me and it is rumoured that (aged 27) I may still possess a Paddington Bear duvet cover.

 Henry is seeking sponsorship for his running in the 2016 London Marathon (24 miles or 40 km on 24 April) to raise funds for medical research.

Nerdy MD2For many years now I have been reading and writing about the many issues around infant PS, and seeking greater recognition of the turbulence that affects a fair number of those affected by this rather common ailment.

I have been intrigued by the unity among parents affected by PS: those who write report as one that it was their most traumatic experience ever – and that all too often it left them feeling cheated in one way or another.

On the other hand, those who themselves have had PS respond and reflect on it in many different ways, and the reports above are typical but only samples of many very different responses.

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!

Reflecting on my 70th

Birthdays and anniversaries are times for celebration, and reaching “three-score years and ten” years is certainly worth a big three cheers! But they are important for reflection as well.

150926-25 sml

Renmark Reunion September 2015

Gratitude to God and to the most important people in my life over these 70 years are features I’d like to be emblematic of me.  I am still surrounded with so many loving and kind people, I have enjoyed wonderful peace and excellent health, and my contribution in several circles is still wanted and apparently appreciated.

Ten days ago Helen and I gathered to celebrate my 70th birthday with our 4 children, their spouses and our 11 beautiful grandchildren.  A wonderful 5 days . . .

October 6th is ten days after my birth-day and  marks the 70th anniversary of the life-saving surgery I had in the Netherlands.  I would not be writing this but for that day in my life!

Together with the country of my birth and background, my weary and expecting parents were struggling to emerge from the ordeal of World War 2.  And then I arrived, their long-awaited first child, but soon clearly defective: scary, uncontrollable and life-endangering vomiting (infant pyloric stenosis – “PS”).  And these were times when medical science was pretty rough and ready by today’s standards and when people didn’t dwell on what they’d rather forget.

Pic 12

Mother with me – October 1945

So October 6th marks what I now realise was the gift of a new and wonderful second start in life, but also the beginning of a life-shaping journey of exploration and discovery – outside of me and within.

Outside, my parents were unwilling or unable to answer my reasonable questions about the 10 cm scar on my belly, and this drove me to look for information elsewhere.  But until the advent of the web, this search yielded only cold textbook medical data about PS and the then 33 year old surgical fix for the condition.  And explanations of my deeper issues were nowhere to be found: there were no pointers to where these might be unearthed and no ways of identifying people who could help me to realise (as I do now) that my pain was by no means wacky.

Book coverWithin, I was tormented with private pain from the dawn of my self-consciousness until recent years.  Even now I am still working to piece my private pain-puzzle together, although the web has given me access to much information, clarification and to networking with fellow-survivors, all of which has enabled me to receive and share much healing.  Since 2012 I have blogged about my journey, and in 2014 a pediatric surgeon friend and I published a small book, in which he explained what many still regard as the elusive cause of PS and I outlined my personal experience of this condition. It so happens (in Australia at least) that October 6 falls in “Mental Health Week” – and my own story has certainly helped me to feel a sense of identity with people challenged by mental health issues.

Time changes things!  The past 70 years have taught us the value of openness in the home, the importance of both listening and speaking for healing, of collaboration in achieving goals, and (by no means least) we have learnt much about trauma.

70 years have also brought huge changes to surgical technique and to holistic care in the hospital and home.  Time seems to have done less to change the unhelpful attitudes of some in the medical profession – but that’s due to human nature being far from perfect.

What do these changes (and their lack in some respects) mean?

120327-07-WgHcThe kind of trauma symptoms I struggled with is rare among more recent PS survivors.  Their surgical scars are sometimes almost indiscernible, usually tidy and very rarely as gnarly.  Affected children’s and their parents’ questions are typically answered much more fully and sympathetically, and the children are helped to understand, “own” and even feel pride about their story.

As I see it, I have discerned this is the growth in myself.  I am indeed a survivor from a bygone era of medical practice and parenting, and my scar is an exhibit of mid-20th century surgery.  I know it’s not socially correct for a cultured older gentleman like me to proudly show off his scar as an 8 year old lad might… but I’m catching up on lost joys and enjoying it!

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Postscript

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

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!