Tag Archives: medical narrative

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!

How we deal emotionally with infant surgery

Even after many years of reading the infant pyloric stenosis (“PS”) stories of patients and parents on web forums and blogsites, there are still some that still especially move me.  Notable among these are narratives that make me realise, This story could be part of my own story.

My mother and me, I assume a short time after my return home

My mother and me, it would seem a short time after my return home.

My parents refused to talk about the PS surgery I had as a 10 day old in 1945, no doubt in part because many parents did not talk about such things in times past, and I’m sure it was also because they were too traumatized by what actually happened.  I’ve written about this under the My Story tab on the header.

Recently I found a brief interaction between a mother and reader on a German web site. What would move a woman who chose the web-name of “Sewing-monster” to write about her baby son’s PS 5 years after the event?  Traces of the answer are not hard to sense.  Readers of German can read the brief interaction (starting at #6) complete with native idiom; what I give here is a readable translation.

Yes, an operation for one of our mini-mice is always terrible for the parents…

My Big Boy (who is now 5 years old) was operated on for the first time when he was just 10 days old.  Two days after he was born they said he had “adjustment difficulties”, but things went from bad to worse and then after a week they said “pyloric stenosis”.  By then he was only vomiting and keeping none of his food in.  Because he was supposedly too young for this illness and they were also uncertain about this at our hospital, he was referred to the University Hospital in Greifswald and then operated on at just 10 days old.  He survived everything well, slowly became accustomed to food, and at just under 5 weeks we were allowed to take him home.  But for me it was a nightmare.  I remember well how I just cried.

But today he is a squealing 5 year old, except that he still does not like to eat very much.

The second operation followed when he was a good 3 years old, for a congenital umbilical hernia which had not cleared itself up.  Luckily, that was only as an outpatient and after 4 hours I was able to take him home again.

Luckily my mouselet cannot remember any of these two operations.  He does sometimes ask us why he has such a large scar on his stomach.

Another mum, Bianca, replied –

How crazy!  Even this early!  You have already been through a lot.  It tears at our hearts when we see our little ones lying there like that!  I found the children’s ward “prison beds” especially terrible!  If I may ask, what does the scar look like to you when you see it so fresh?  In our case they made the cut in an abdominal crease and we hope it will be hard to see in later years!

“Sewing-monster” responded with –

The usual practice is to make the incision in a fold, and nowadays they’d probably use keyhole surgery.  But yes, he was such a “special case” that already now he has quite a long scar – certainly 10 cm.  It is quite pale now but you still see it quite clearly.

What stood out for me?

  • This mother’s son had his PS operation at 10 days old – exactly the same as I did.  I feel an immediate connection, just like I do with people who had any infant surgery as long ago as I did.
  • The first signs of this lad’s PS emerged only 2 days after his birth and it took a full week for him to be diagnosed and recommended for surgery.  From what I have read this time lag is quite typical, and in the little I know of my circumstances the same was probably true of my case.  Parents often wonder why this delay in diagnosis occurs so often, especially when a baby is so small and frail and the key symptoms of PS are very clear.
  • This baby spent several weeks in hospital after his operation.  We’re not told why; today most PS babies are discharged just one to three days after their surgery.  In 1945 two weeks in hospital was the norm and now wonder if I also had to spend longer there because my PS too was so early.  I have mentioned my mother’s regular commuting by steam train to get breast milk to me in the city hospital.  All this may or will have been part of what made my mother so anxious.
  • Mothers of PS babies routinely tell us that their baby’s extreme sickness and surrender for surgery were the worst time they have ever had to endure.  This German mother adds how upset she was when her son was returned to her care at home.  Many parents also mention this: besides their natural anxiety there is often continued vomiting, they now have a baby who has never yet learnt to feed normally, there is sometimes a wound infection or a developing hernia, and they feel deeply insecure about whether any or all the unexpected uncertainties portend failed surgery or further problems.
  • Like my mother and me, “Sewing-monster” and her 5 year old clearly care about aesthetics and their appearance; she comments on her son’s 10 cm scar (huge by most standards) and mentions that at 5 years old he often wants to talk about it.  Although my scar even today is less than 10 cm long, it also shows very clearly how little many 1940s surgeons cared about their patient’s future emotional well-being.
  • PS babies grow up as normal people do, but one wonders what's going on deep inside.

    PS babies grow up as normal people do, but one wonders what’s going on deep inside this young man.

    This German post also shows once again how important it is for parents to be able to air their pain, anger, and sadness, and how much most children who have had early surgery that they cannot consciously remember need to repeatedly hear and “process” their story and their emotions about it.

There is clearly a lot in this brief web exchange with which I immediately connect.

There is also a lot to instruct and reassure parents and patients, and to challenge the medical professions.

My own “Little Red Book”

This post was written while I am enjoying and working  in Tasmania, which hangs under the Australian mainland as its smallest State and like a heart-shaped earring.

My connection with Tasmania is slender in terms of time: I have lived here for only 5 years, the shortest chapter of my life, and yet these five years were the most formative of my life.  I have posted about this elsewhere, but for here and now, just one small sample.  Forgive my reminiscing in this post.

One evening this week I attended a function for the local Dutch community.  At this function I met up with an older man who lived across the road from us when I lived in Tassie.  This reconnection brought back a flood of memories: he was a successful and generous businessman who gave my brother and me our first job as teenagers.  He also asked a couple of our family’s youngsters to mind his younger family whenever he and his wife had an evening engagement.

Library search1It was during one of the first of these evenings that I discovered a small red Pan paperback on this family’s bookshelf.  It was written by a pediatric surgeon and devoted a chapter to each of a goodly list of the conditions of infancy that could be remedied by surgery.

One of the chapters was of immediate and compelling interest to me: it dealt with pyloric stenosis (“PS”), the reason for more early infant surgery than anything else (other than circumcision which of course is purely elective and unnecessary).

In my first 16 years I had been ravenous for a chapter like this.  My parents had made it abundantly clear that they thought it best to tell me almost nothing about the weird scar pattern that was so “front and centre” on me.  Mum and Dad had one book on child health which had one meagre sentence about pyloric stenosis.  On starting high school I discovered “the library”, and several times a year after learning about the cataloguing system I would scan the shelves for any book that would help me to understand anything about PS or scars or surgery or abdominal anatomy and complaints.  There were some more passing comments in the encyclopedias, but I learnt nothing really new.

My “little red book” became required reading every time I babysat.  I found a copy of this book in one of the city bookstores but foolishly decided it wasn’t worth a good part of my very small savings – after all, I could reread the chapter of interest so close to home and any time I was in the city!  Sadly now, I have never been able to find another copy…

This one chapter told me so much more than I had ever known: the symptoms of PS, the condition’s obvious effects on the baby and the parents, the diagnosis and the surgical procedure, and what could be expected during the recovery period.  I read and reread that chapter countless times: this became a ritual, but more than that, it engraved the basic information about PS indelibly into my memory.

Book search2During my first five decades I learnt little more of any significance about PS.  It was when I gained access to the internet in the later 1990s that my knowledge really took off.  The last 15 years have also made me aware of what my “little red book” never told me – or I suspect could tell me.  The problems that have dogged me because of my PS history would not be managed by growing my knowledge of the condition and its treatment.  There was another dimension.

In the 1960s, the medical world knew little or nothing about the somatic (body’s) memory of pain and deprivation in early infancy, or about the long-term effects of this, including the possibility of post-traumatic stress.  Medical-land was unable or unwilling to consider (let alone discuss with the patients of pediatric patients) even the possibility of babies being affected by surgery without anesthesia, and by being quarantined from their mothers to fight infection.  Besides this, in most Western countries many surgeons were becoming increasingly addicted to the wonders and kudos of surgery as effectively the only treatment for infant PS, and again, would never discuss treatment options with parents.

The internet has allowed blogsites like this and web-based discussion forums to share information about experiences, management options, hazards, and the possible outcomes and long-term effects of PS and its treatment.

For me the value of this was kicked off long ago, when my “little red book” was able to tell me what my parents and my paediatrician uncle never would.

Why this blog?

A few of the things I have been reflecting on during an otherwise busy week… consider this with me, please –

  1. writer-thumbDuring the past week several people have taken the time to add a Comment to several of my posts to this blogsite.  Some of those who find this blogsite clearly appreciate what they receive here: what I read consistently is: helpful and reassuring information, useful advice, careful writing, kind and balanced judgment.
  2. Some time ago I found an entry on my pet subject, infant pyloric stenosis (“PS”), on an information website, Answers.com.  Because I thought it fell somewhat short of what I would have liked to find and there was an invitation to edit it, I gave it some time.  Since then I have had a steady flow of “Like” messages from this site.
  3. Because I am writing weekly posts on many of the human issues (and some of the medical ones also) around infant surgery and especially PS, I am often surfing the web for new medical reports and personal experience stories.  In doing so I am struck by how often Google offers links to one of the posts on this blogsite.
  4. Recently somebody asked me, Why do you spend so much time and effort writing so much on this “pet topic”?  What expertise do you have to write publicly and offer advice on this subject?

All of the above is of course tremendously encouraging and affirming – but is it all true, and if substantially so, what’s the significance of that?  All of this made me decide to devote a post to this.

  • I had PS surgery at a very young age and have done battle with several deep-seated and mostly private emotional problems through much of my life of 67+ years: I was sure there was a connection but didn’t understand what it might be until I started using the web, which slowly but inexorably enabled me to connect the dots.
  • Another of the benefits of web access was that it enabled me to find and interact with others who had ahd PS or another infant surgery.  I found that whilst many (and probably most) of them claimed they had not had the “several deep-seated emotional problems” with which I had struggled, quite a number had, that these problems had much in common, and that they were as frustrated with their lot as I was.
  • blog-writing1On the web and in the book trade others and I began to discover a small number of professional people who had found and were advocating for the very clear possibility of a link between what can happen before, during or after infant surgery and the development of post-traumatic stress.  Their professional knowledge gave “body” to what we “traumatised survivors” had experienced.
  • The web also revealed to me that most of the medical world was oblivious or in denial about this link: in fact, much of the Western world believed that “babies don’t feel or remember pain” and that PS and infant surgery have no long-term after-effects.
  • From web-based forums (discussion sites) I quickly learnt that not only babies can be traumatised by infant illness, surgery and mother-infant separation.  Almost every parent describing their experience with a sick baby that involved surgery wrote that it was “the worst experience they ever had” and “more traumatic than giving birth”.  Again, reflecting on my own story and hearing those of others, I have recognized that parental trauma, although different, can contribute to the long-term effects of infant surgery on their child’s future emotional health.
  • Web-based forums also made clear to me that there are many, probably a silent majority of parents, who are very grateful for the care, support and healing they received from their doctor, paediatrician, hospital and surgeon.  Sadly however, the great majority of those who write in are scathing of one or more of these.  Ignorance of the symptoms, poor diagnostic work, an aloof, arrogant or condescending manner, dismissiveness of parents’ personal story, experience and careful research: these are the common complaints about the medical community, and they are repeated ad nauseam, unfortunately.
  • I think & blogFinally, I need to get a bit more personal.
    1)  I have been greatly helped towards healing by working on all the above.
    2)  I care about those who have experienced what I have but for whatever reason continue to struggle with poorly understood and unresolved questions and self-doubt.
    3)  I have the interest and time to devote myself to the reading and writing necessary to publicize what I have learnt in both mind and soul.
    4)  Years of training for and work with a wide range of people in a pastoral care context have dovetailed with other aspects of my upbringing, personality and Christian ethos to help me to contribute to the available body of information on PS and infant surgery issues for the benefit of people who have walked on a road the same as or parallel to mine.
    5)  I am often heartened by the response I get from others on these life journeys.
    6)  I have found that my reading, research and writing are personally interesting, clarifying and healing.

A busy blog on infant surgery

writer-thumb2012 was a great 2nd year for this blogsite.  Traffic more than doubled, and feedback even more so.  There is clearly a need for accurate, well-researched, responsible and comprehensive information about my subject, infant pyloric stenosis and its treatment.  I pay particular attention to the surgery for this condition and the possible after-effects of the condition and its treatment, which although far from universal are far from exceptional.

An American friend and co-blogger has posted about this subject since early 2009, giving special attention to how she has experienced PTSD after her infant surgery (also for pyloric stenosis), and to the therapies that she has found helped her towards healing.

WordPress hosts this blog, and it’s the most popular and I believe the best host in the business!  WordPress gives me (the blogger) lots of information about how I’m going and can do better, and every year it provides a summary of results.  Here are some of the details.

I started to post to my blogsite SurvivingInfantSurgery after retiring from full-time work late 2010, having started to research my subject quite thoroughly since I gained access to the web in 1997.  During the first 13 months (from December 2010) I posted 106 times and WordPress recorded almost 8,000 visits, a daily average of 22.

blog-writing01During 2012 I posted 54 times, and the visits rose to almost 18,000 with a daily average of 49.  The rate of visits fluctuated, however: the monthly average of “hits” ranged from 26 to a whopping 73.  The average daily for the first week of 2013 was 70.

On one day last October, the blog recorded 339 visits, the great majority being from Pakistan and looking at a post that sought to create a better understanding between pediatricians and the parents of sick babies.  I can only conjecture that a medical school was advised to read it… any better (or whackier) ideas?

I was interested to note that the five most-read posts last year were all written in 2011.  In order they were –

  1. one of the posts on adhesions following infant and other abdominal surgery;
  2. The first of 3 posts on the effect of post-surgery adhesions and scars on a pregnancy;
  3. healthy doctors and patients (referred to above);
  4. the long-term effects of pyloric stenosis and its surgery; and
  5. a post on the way pyloric stenosis was treated in the 1940s and ’50s (of strong interest to my generation) – one of two on this period and part of a series reviewing the 100 years of this surgery.

I try to include several images with each post, if possible to illustrate or further explain the text, and otherwise to break up the print that results from my verbose information-giving.  Many of the visits are from people looking for illustrative material on the subjects I write about.

Understandably, the great majority of readers were from the USA, followed by the UK, Canada, Australia, India and (yes) Pakistan.  But our 2012 readers live in 133 countries, most of them without English as their first language.  Thanks to modern communications, our world is fast becoming a global village!

My blog has become noticeably more evident and traceable on the web, as any search for its subject matter will quickly show.  The number of visits also means it gets a good rating with search engines, and including links to other subjects on which I have posted has also served to increase traffic.

Fred blogging01wThe success of my blogsite has been most gratifying to me personally.  I find writing satisfying: it prompts me to continue researching my subjects, helps clarify my thinking, and has therapeutic value, as I enjoy writing and especially when I know that I have at very long last overcome most of my deep-seated embarrassment and inner pain and struggle about what was for so long a closed chapter.

But just as much, it gives me enormous satisfaction that my research and blog have occasioned networking with others who have also experienced post-traumatic stress after infant surgery.  Some of these contacts have been brief, others extended and a very few have resulted in ongoing friendship that comes with continuing interaction.  Many of those who write to me have feelings of relief and being understood that are mutual.  Hooray and I thank God.

A third area of great satisfaction is that during the past year I and others have increasingly interacted with health professionals: we are becoming more visible and widely heard, and others are entering the areas of our concern.  In most cases these surgeons, paediatricians, and therapists are in compatible work.

It remains my hope that SurvivingInfantSurgery will continue to flourish, informing, encouraging and strengthening the community of those who as parents or survivors (and sometimes as both) recognise and support the need to raise parents’, patients’ and doctors’ awareness of aspects of pyloric stenosis and other conditions of infancy that have been denied or ignored for far too long.

Dealing with PTSD after infant surgery

People who have had infant surgery for pyloric stenosis (PS) or other maladies deal with this in many different ways.

The human tribe has been compared to a zoo: the homo sapiens species also includes a large range and variety of animals, characters, looks and lifestyles.  Dr Gary Smalley has aptly and colourfully compared our different human temperaments with those of the beaver (Melancholy/Compliance), golden retriever (dog, Phlegmatic/Steadiness), lion (Choleric/Dominance), and otter (Sanguine/Influence).

Years ago I discovered a blog by Randy Friedman in which she chronicled her release from the after-effects of her PS surgery at 6 weeks and “leveraged” from this to promote her life coaching and golfing clinic.  Her site breathes energy and is well worth a visit.

This past week I came upon Laurie A Wheeler’s account of how she too overcame the post-traumatic stress resulting from her difficult PS surgery in 1969: it had affected her mother as well as herself, and before she reached adulthood she suffered many years of multi-faceted abuse at the hands of a family member.

Laurie Wheeler also not only survived but overcame the PTSD that resulted.  She wrote to me –

I don’t have any problems, but that’s because of Body Electronics (a form of sustained acupressure done with group work)… I actually processed on the table the very early conscious memory of the operation, it was very odd because it was from an infant’s point of view so no real language to describe other than wanting the “warm thing” (mom).  No fear, no pain really, no way to cognify self, but somehow cognifying other… forced individuated consciousness [that] must be part of the trauma.

She explained further –

I found using a variety of alternative methods to traditional counseling and yak sessions actually helped.  I have been involved in a process called Body Electronics and then helped develop a discipline called the Compass Way (or embodied grace practice) where you learn how to identify your self protective, every day, and grace (at your best) consciousness.  The last is what cleared my PTSD completely.  Sadly that was from a mixed bag, most likely from the infant surgery to start [with] (though I asked mom and she said I was under general [anesthetic] at least, I suppose there’s a blessing for that…
They had never seen a baby born with [PS] and [the doctor] explained that [my pyloris] was not swollen shut, but was solid.  [Mom] had tried for five days to get me into a doctor; one of them told her I was allergic to breast milk.  Poor mom, she cries even now 43 years later.

Laurie’s website is also well worth a visit, and I was challenged and inspired by the way she wrote up her nutshell life story – as an example of the kind of writing that others will read.

A large part of a zoo or botanic gardens visit is to see and appreciate the rich variety of animal and plant life on our planet.  Every such visit also helps me to recognise that as a Golden Retriever / Beaver (to use Smalley’s characterizations) I will never manage to think, feel and act like a lion or an otter!

It seems clear to me that Laurie and Randy both have Otter/Lion temperaments, and I’m grateful to savor and learn from the way they have been able to manage their PS and PTSD.

Dogs and beavers I’m sure would like to be bigger and more fun-loving than they are, but they also seem to be quite happy being what they are and doing what they do best.