Tag Archives: self-consciousness

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.

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!

Dealing with scar shame

One of the common results of infant surgery is scar shame.

Self-Confidence2 smlIt doesn’t affect everybody, of course.  Some of us are extroverted, self-confident, ready to take on the world.  I well remember my youngest granddaughter showed these wonderful traits from the day she was born!  And 3½ amazing years later she still does… much to her parents’ delight (and occasional frustration)!

But we’re not all like that: two of her siblings are introverted and hyper-sensitive like I tend to be.  Their struggles and hurts are painful reminders of how hard I have often found it to think of myself and my issues in more realistic and objective terms than I tend to.

Recently one of my correspondents in the UK went online with a holiday photo of herself in a bikini and the caption, “this is the first photo I’ve ever posted of my scar.”  Her photo showed a deeply indented scar across her middle; her life had been saved at a very early age by surgery to remedy pyloric stenosis (“PS”).  Now, many years later, she went on to write how glad she was she had taken this step of “going public”: “I’ve no idea how many photos I have with my arm placed strategically across my scar.”  Others have written lines like, “Have been embarrassed by my scar all my life and never wore a bikini.”

Many others have gone online to say that their scar has never been an issue, never give it any thought, or that they’re proud of it.

My UK correspondent went on to publish images of a recent Cosmopolitan UK article (April 2015) by Natasha Devon.  Ms Devon is also an infant PS survivor and two years ago she suffered a ruptured spleen which resulted in her having a large laparotomy (the opening of the abdomen from top to bottom).  I had read one of Ms Devon’s blogs some years ago and want to recommend her work and writing to my readers who might be helped by them.

Art Body trolls-2 150517 FbMs Devon does excellent education and advocacy work in the UK via the spoken word, print and electronic media.  Her gifts and life Art Body trolls-1 150517 Fbexperiences have equipped her well for this work: her struggle with her PS scar resulted in a childhood obsession which seems to have been very like what I went through in my younger years.  In her teenage years this obsession became fixated on her scar becoming deeply indented giving her what look like two spare tyres around her waist.  Her concern over her body image then developed into anorexia nervosa.

Now well and truly recovered and adult, Natasha Devon has devoted herself to helping particularly girls and young women who battle with their own body image, with society’s worship of the “body beautiful”, or the predatory behaviour of insensitive and repulsive people in our various home and societal circles and via the media.

Here are some links to read more if you are at all interested –

Loving your Tum (2012, The Real Beauty Debate) – Why do many women struggle so hard to have or get a flat tummy?  Accept and love your body!

My Body is Freaking Awesome. Fact. (2013, The Real Beauty Debate) – Natasha launched a series of 4 tee-shirts with this message or alternatively: BeYou-tiful!  She also tells the story of how she recently survived the belated diagnosis of a ruptured spleen: My body is strong, resilient, clever for healing itself.

Why we should all feel sexy (2013, Cosmopolitan UK) – this article responds to a UK survey that found that many women lack self-confidence, and addresses the causes.

Cellulite, scars, tattoos, hair, bingo wings and bellies: It’s summer – so feel free to get it all out (2013, The Independent) – Natasha celebrates the start of another chancey UK summer with a call to get out into the sun, shed some of that British reserve and enjoy the freedom to dress down a little.

I beat sick internet trolls who said my body was disgusting… and now YOU can too (2014, The Sun – UK ) in addition to ‘They said my body made them puke’ Baring scar in bra left woman troll target (2014, Daily Star) and also Body Image Campaigner Shuts Down Bullies With Bravery (2014, Girl Talk HQ) – After being abused on the internet for showing and telling about her scarred body, Ms Devon takes on the trolls, defending her advocacy and giving some tips on dealing with internet bullying.

Dear Jamelia & Protein World….. (2015, The Real Beauty Debate) – Natasha takes on the fashions and food industries and how they play on the insecurities of many women to market their products, referring to her own struggle with her body image.

I found it interesting and refreshing to read some of the story and writing of someone who has worked through some of the most difficult issues I have had to deal with myself, but from a woman’s viewpoint.  Some of women’s struggles are of course not mine, although I am sensitive to them.  But in other ways men have their own distinctive struggles.

Most of us, whether female or male, feel vulnerable and insecure in certain situations.  Some of us have few of these challenges, others have them as part of their daily life, perhaps even habitually.  If you can identify with this, Natasha Devon is well worth a visit!

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.

A pyloric stenosis baby

These are the very first photos of my mother with me, and 69 years later they keep touching me deeply.

Pic 12194510-1 FLVClick on the images to enlarge them. Yes, they are very grainy: they were taken just a few months after the end of World War 2: my Dad was never much of a photographer, but more to the point, my parents and their country (the Netherlands) had just been liberated from five terrible years of occupation and oppression.  But despite the obvious poverty of the photography these images capture enough.

My composed mother

Photos of a yummy mummy with her first baby are usually drenched with glowing pride, obvious health and radiant happiness.  Sadly, both these photos are somewhat different.

Despite being a devout Christian committed to a life of serving others as a Jesus-follower, Mum’s life of 28 years to this point had not been easy.

  • As a child she had sustained a head injury which left her with frequent and severe migraine headaches and later, early onset Alzheimers.
  • During the early Depression years she had left home in an idyllic small town and moved 200 km north to Amsterdam, hoping to study medicine. But her frequent headaches forced her to abandon her studies.
  • The student with whom she fell in love was a good man but also a compulsive networker and more interested in following lectures and making new friends than in finding work so that he could marry his fiancée. In later years she would still remember the nightmares she had in those years.
  • During World War 2 the Dutch witnessed ruthless Nazi destruction and atrocities, the programmed dehumanisation and then menacing removal of Jews, and the brutal suppression of Dutch dissent. In 1943 my father at last obtained a church appointment which enabled my parents to marry.  But this also meant that my Dad as a public figure in town was sought as a hostage whenever the Germans carried out reprisals for some act of the Dutch Resistance.  He survived this time but did develop TB (which we are grateful was treated without apparent damage).
  • As was normal at the time, my mother was never very open about her inner life and its stories. Not only did she not speak easily about herself; she batted away questions she found uncomfortable.
  • Early in 1945 she became pregnant with me, her first child. The joy and glow of pregnancy must have been somewhat clouded by living over 300 km from her parents and sisters, a relatively small distance today, but not in the ravaged Netherlands of 1945.
  • The day after I was born Dad wrote to his parents: “he loves sleeping and eating, in this he is like both his parents, not to mention one of his grandparents… we don’t need to tell you how much we have enjoyed and been thankful for so much good fortune and wonder, for answered prayer and dreams fulfilled!”
  • Less than a week later my parents’ firstborn was vomiting himself to death and was diagnosed as suffering from infant pyloric stenosis. On day 10 my lanky little form lay on an operating table, bundled up for warmth and strapped to a small cross to keep me still, as general anesthetic was usually regarded as too hazardous for infants under 2 years old.
  • Infection was still a huge hazard in 1940s hospitals and particularly after surgery on tiny people in an emaciated condition. This meant a standard of two weeks of post-op care in hospital, and for much of that time, isolation from family including even a nursing mother.  Mum had to express milk daily and deliver it herself to the hospital 15 km away by steam train.

These two photos were clearly taken after my return home.  As is fairly usual after pyloric stenosis is corrected, my weight and condition quickly returned to normal, and this is confirmed by the weight chart my parents sometimes showed me (but sadly, later tossed out).

On one photo my mother is uncomfortable with the bright sunshine.  Both show her as young, well and caring, but also as formal, unsmiling and preoccupied with her damaged child.  All this is how her children remember her.

The sleeping baby

On both these photos I look well but am not just asleep: this baby looks exhausted!  I can only wonder whether this was the truth or whether it just showed my parents’ lack of (or disinterest in) photographic skill!

To me these photos reflect sadness.  Under all those warm clothes was a scarred little body which reminded them every time my parents bathed or changed me of what they and I had just endured.  Scar belly01cBy the time I was allowed home, the incision wound would have healed to the point that the scabs were crispy crusty and starting to fall off.  But the wound had been sewn up with heavy and deep stitches to prevent it rupturing as I cried and strained, and in case there was more vomiting (as there often is after this operation).  These sutures would have been only recently removed, leaving longish wounds with dried blood where the threads had cut through the tender young skin.  Although the photo I have posted here is of an adult male it accurately conveys what my dear Mum had to confront many times each day.

But this violence and ugliness had also given me life – in fact one that would enjoy great length and blessing!  We can also be grateful that all wounds soon get past their unsightly worst, and most people’s scars soon fade: after a year or two the damaged tissue has changed into white or pale-pink kanji markings.  Despite this, the unevenness and lumps often remain and the incision line, especially in babies, can become disfiguringly sunken.  My scar is sometimes hardly noticeable but it can also look like hollowed pockmarks left by a shotgun blast.

As I have mentioned elsewhere, my mother seems to have struggled with how best to help her damaged son but did this in ways I have always regretted.  She stonewalled and procrastinated, promising to explain “sometime” but talking to friends within my hearing, she made a variety of clothes that sometimes framed and sometimes hid my scar, and she embroidered words based on the word “pylorus”… Clearly, she had been deeply affected by the pyloric stenosis of her first child, the hospital stay that followed, and the 1940s scar that became a kind of sacrament (or is it a “scar-ament”?).

Strangely for some, unsurprisingly to me, my gnarled midriff was something I hated and hid from public sight for many years.  Although I now feel pride in being a survivor and belong to a community of people who share my experience and understand my emotions, every time I see my body I am still flooded with mixed emotions.

Sharing some of these feelings and reflecting on my parents’ and my experiences with one of the maladies of infancy, with infant surgery and with being “damaged goods” all help me and have helped countless others among the many readers of this blog.

Pyloric stenosis – surgery or medical therapy? (2)

When I wrote this post there had been only one response to the question I posed at the end of my previous post: If you were the parent of a baby dying with pyloric stenosis (“PS”), and you knew of the choice you could make between surgical and medical treatment, what would you ask, choose and why?

Since then my web searching and reading have yielded two more sources which are worth considering.

RubyOne is from Michelle, who wrote a forum post about her infant daughter’s hemangioma (“strawberry birthmark”) and the very different responses to this by two mothers who had also had a child with a facial birthmark.  One had opted for prompt surgery and the other had waited and seen her child’s blemish almost disappear by age 7.  Neither child had ever shown being bothered by the surgery or growing up with the birthmark.

Michelle set these two quite different stories next to her own, as she had been “really self-conscious … particularly as a teenager” about the disfiguring scars from the PS operation she had had as a baby.

Three different people and three different reactions to a very personal issue!

The second document I found was a Spanish powerpoint about PS surgery – which I was able to get translated.  Further to what I stated in my previous post, Dr Christian Pérez Pulgar actually presented in a fair way the alternative way of treating PS: by a course of medical therapy.  The careful attention he devoted to this was of much interest to me –

  • Before the widespread use of Pyloromyotomy, hypertrophic pyloric stenosis was treated medically with atropine.
  • However, the excellent results associated with the Ramstedt procedure [pyloromyotomy] have led to a virtual abandonment of the non-surgical treatment.
  • According to theory, the [drug] Atropine temporarily suppresses muscle contractions and decreases gastrointestinal peristalsis, and therefore breaks the cycle that caused the symptoms.

The key details of the most recent article advocating the value of the medical treatment alternative (and published in 2005 by a team of Japanese doctors) follow on the next screen –

  • Atropine Sulfate injectn1Dr H Kawahara used atropine intravenously (0.01 mg / kg / day) in 19 patients 6 times a day, 5 minutes before feeding.
  • Treatment with atropine was successful in 17 of the 19 patients.
  • The total average hospital stay was 13 days, the range being 6-20 days.
  • The duration of the intravenous and later oral atropine therapy was 7 and 44 days respectively.

Sadly, Dr Pulgar does not give us his personal evaluation or comment.  However, from his first screen (as above) and the further content of his document, we may conclude that he concurs with the strong advocacy of surgery for all but the mildest of PS cases.

Where does all this leave the parents of a PS baby?

  • As my blogging colleague Wendy Williams suggests, most parents of a PS baby will not have the time or tranquil mind to dig up the facts, weigh up what they discover, and then muster the confidence to discuss these matters with a time-pressed and typically single goal-oriented and controlling doctor.
    However, up to about 20% of PS babies have a parent or close family member who has been through PS surgery and these parents will be far better prepared than most – and also well able to guess at how their child is likely to handle the future wearing surgical scars.
  • 110908 sick bub1My years of researching this subject have shown very clearly that while the majority of those who carry a surgical scar were troubled by self-consciousness and self-hatred in their growing years, and many of these people still don’t like it, there is also (what seems) a minority who profess never to have been bothered by being scarred in their infancy.  And then there seem to be just a small minority (as far as I can assess that) who have significant to major ongoing effects from their surgery and/or the way their closest relatives failed to manage it well.
  • Laparoscopic (or “keyhole” or “minimal access”) surgery can in theory greatly reduce scarring from surgery.  However,
    (1) not every baby has access to this, as it requires considerably training for the surgeon and team, is more costly, and not available in every hospital; and
    (2) because scars resulting from infant surgery grow with the patient, the already disfiguring pitlike scars left by laparoscopic surgery will usually become at least 3 times larger and more obvious and disfiguring.

My conclusion?

We are each very different and unique. And we know ourselves best.

Therefore if parents have reason to think that their baby may in time be significantly affected by the scars they inherit from their battle to survive, they should (if they can) seriously consider pressing their doctor to support them in trying the medical therapy alternative to surgery.  It will take longer and will cost them more patience and perseverance, and perhaps some more money.  But they can be assured that in about 80% of cases (see Dr Pulgar above and also my previous post) they will be successful, they may well save their child trauma and other emotional pain, and their child will probably thank them one day in a most wholehearted way!

Improvements in infant surgery (2) – Tidy scars

Those of us who have had abdominal surgery realise sooner or later that scars take on a look of their own.  Our bodies are each unique, as are the skills of a surgeon, the standard of their work, the course of healing and the interaction of all these factors over what is typically a 2 year healing period.

Adults usually choose when to have surgery and sometimes their surgeon, and as a result they have some sense of involvement and perhaps sometimes even some control as to the outcome of their surgery and the appearance of their scar.  In the course of my lifetime of work with people, I have been amazed how many adult people regard their new scar as an interesting showpiece, even a badge of their fortitude or survival skills!

P1060101aThis is not always so after infant surgery.  I had pyloric stenosis (“PS”) surgery at the tender age of 10 days, and cannot remember being greatly aware of my scar until almost 6 years later.  It was then that I remember feeling traumatized by continual embarrassment and humiliation as my parents stonewalled my questions about the weird and alien “thing” on my belly, and by feeling lost both for words and emotionally in dealing with the curiosity of classmates and grown-ups.

Now I realize that my PS scar is above average for 1940 surgical work: not unnecessarily large but a bit untidy (off center) and surrounded by a galaxy of sizeable pockmarks from the kind of needlework which of course grows with the baby and is now used very much less routinely.  I am especially struck by the number of people who having had infant surgery and have considered or acted to have their scar modified and reduced.  Only the most extroverted and confident of us whose lives were saved by early surgery seem to find it easy to talk about or flaunt our scar.

Now at last, after almost a lifetime, I have come to terms with my stomach scar, and have learnt that this is what most of us find as we age.  I also realize it’s not bad compared with some others of the time, and don’t think it can be much improved now.  But knowing my own and others’ struggles with this bit of self-acceptance, I am rather too often angered by the haughty, patronizing, dismissive or flippant way some surgeons go into print about their attitude to their work of cutting into and repairing their clients’ bodies and to their patients’ feelings and deeper needs.  Here is an example –

In the vain world in which we live, patients often consider the quality of the skin closure as a benchmark of our technical skills. Although it is of minimal overall importance, clean, neat and well approximated skin edges without evidence of suture material often impress and please patients.
(Reference available on request.)

If this petty peeve were an isolated example, I would not be writing about this subject.

Surgeon01Almost all of us whose lives have been saved by infant surgery are I am sure thankful for this gift, but it is very difficult for any patient to be grateful for the insensitivity of this and similar surgeons.  They should find other work, perhaps in a butcher’s business, an abattoir, or a veterinary clinic.  Not strutting their stuff on my and other people’s bodies, especially when their little patients aren’t near old enough to challenge them about their work or attitude… something that’s also too often impossible among adults.

Most medical workers have very clear ideas about which doctor they would consult and which surgeon they would allow to work on their body.  I wonder why?  The medical world may take many of each year’s smartest and most promising students – but it still has a lot to learn.

I am glad that one of the most-read posts on this blogsite is devoted to a better understanding between doctors and patients.  Here’s hoping.