Category Archives: Medical narrative

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.

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.

We survive infant surgery in our own way (2)

I feel very relieved nowadays!  I have been significantly (though mildly) traumatized by my infant surgery (for pyloric stenosis) and what went with it – but this hasn’t make me weird or unique.

For much of my life I was pretty sure that I was rather unusual, not helped by the fact that sometimes others who’d had similar surgery but had travelled a different road clearly thought I was “in need of help”.  I know that I was, but perhaps not in the way they were writing me off!

I have had a lot of help.  The internet has given me the opportunity to find, compare notes and learn from many others who have travelled the lonely and scary road I have.  Most in a passing and superficial comparing-notes kind of a way.  With other people, both they and I have felt free to really open ourselves and sometimes we have become good and trusted friends.

The web has also given me a mass of detailed information: about the infant pyloric stenosis I had, how it would have been treated almost 70 years ago, how that condition and infant surgery can sometimes affect the infant patients and their parents, and what long-term effects may continue to trouble survivors.  Not everybody needs or even wants all that detail, but I had craved for it for so long.  At long last I could access publicly available documents which answered most of the questions I would have loved to ask my parents or a doctor, but never had the courage or the open door to do.

Human variety1Infant surgery survivors write in widely different ways about how it has affected them.

Most men (but certainly not all) simply don’t write about having had surgery as a baby and what it’s meant for them.  If they talk about it at all, it will most likely be with bravado and a profession that they never think about their early surgery or scarring and that they are quite unaffected by it.

Men typically like a challenge to “fix” something and to brag about their successes.  They don’t like issues about which they feel uneasy and that cannot be remedied or explained 1-2-3.  Many men bond by telling tall stories and tales of bravery with bravado.  On the surface, it seems that the experience of pain and shame has not touched many men, or they have fire-walled them as a personal and private matter.  The fact that so many men love weapons, powerful bikes and cars, empire building, or may be abusers tells the world that we men are not always “real” about ourselves.

man-woman01I recognize that I am a “gentle” man.  My mother worried about whether I’d survive my life-choice to work with people.  It runs in my family: some of my children and grandchildren struggle with the gentleness for which many people love them.  A nephew lasted only a few weeks in the army (he still doesn’t know how he woke up one day in a hospital bed).  I am grateful that none of my immediate family needed infant surgery as it has touched me!

A quick search of the web will show, however, that I am far from the only man who has struggled with symptoms of trauma after infant surgery.  Though thoroughly outnumbered by women, many men have clearly travelled a road similar or parallel to the one I have described on this blogsite.

With women it’s a somewhat different matter.  It is fairly typical of women that they bond by what may be termed (sorry! a tad roughly) “bitching”: sharing gossip, grievances, and stories of their pain and suffering.  Put more respectfully, women like what may be termed “the ritual lament”.

This divide is not simply gender-based.  Consider the passionate prayers and psalms in the Bible (many of which are also “ritual laments”) and the haggling that goes on in a Middle Eastern market; compare that with the ancient Greeks’ love of philosophy and the Roman Empire’s legal and military prowess.

One wonders whether women on average live longer than men because they are better able to share and deal with life’s hurts and complexities rather than maintaining appearances with the proverbial stiff upper lip.

Is it any wonder that “gentle men” like me often feel more comfortable talking with women than joining in sessions of “men being men”? And that I am comfortable being perhaps “different” but not weird or unique.

John’s life-changing infant surgery

As I observed in my previous post, reviewing 2012, one of the heartening things has been the growing number of people connecting with this site to tell their infant surgery and PTSD stories, to network, and some to interact as trusting friends – as those with a shared experience or passion will often do.

This post moved me deeply and conveys the message of this blogsite so well.  I am sure it will bring home to many of our readers that infant surgery was usually and can still be traumatic, both at the time and in its after-effects.  Whilst I am thankful that anesthesia and pain management are now much safer and more advanced, John’s story certainly underlines many things for me.

This week’s post belongs to John, who writes…

Thank you for your blog.

I had infant surgery for a congenital cataract at age 8 months in 1975.  I now know from your blog and from other research that the surgery was conducted without anesthesia.  In the recovery room, my eye was bandaged and my arms were taped to boards so that I could not bend them to tear at the bandages.  I was sent home in this condition and remained bound, I believe without pain medication, for one and a half to two weeks.

I am wearing blue, am about six months old and have not had any surgery.  I appear to be a normal healthy baby who is happy.

I am wearing blue, am about six months old and have not had any surgery. I appear to be a normal healthy baby who is happy.

Here I am wearing white, I am about a year old and have had my first surgery (at about 8 mos.).  You can clearly see how severely I was affected.  I appear to be younger in the second picture than I am in the first.  I am holding my head and my body, in particular my left arm and leg, in a very un-natural way, and I am squinting with my left eye--the eye which was operated upon.  In looking at the picture, I feel like I must still be trying to get away from the pain.

Here I am wearing white, I am about a year old and have had my first surgery (at about 8 mos.). You can clearly see how severely I was affected. I appear to be younger in the second picture than I am in the first. I am holding my head and my body, in particular my left arm and leg, in a very un-natural way, and I am squinting with my left eye–the eye which was operated upon. In looking at the picture, I feel like I must still be trying to get away from the pain.

According to the medical literature, infant cataract surgery remained a “controversial procedure” with no standard technique or outcome (or even measurement of outcome) until the early 80’s.  My surgery was one of thousands performed between about 1960 and about 1980 when a viable procedure was finally developed.  Prior to 1980, all infant cataract surgeries were, to say the least, experimental.

My outcome was poor.  I never gained vision in my left eye and suffered three more surgeries by the age of ten – one, another experiment to remove scar tissue that had grown into the space they had tried to open in the first surgery; the other two for acute angle glaucoma, a very painful and (although not known at the time) common side effect of infant cataract surgery.

As part of the experimental protocol, I was subjected to aggressive vision therapy during my toddlerhood.  This “therapy” (again with no known outcome) consisted of my wearing a contact lens in the blind eye and for several hours a day wearing a patch over my “good” eye.  The patch effectively rendered me blind while I wore it.

At age 26 I ultimately lost my left eye due to the earlier surgical trauma and now wear an ocular prosthesis.  Last year I received a diagnosis of PTSD and have been seeing a very experienced trauma therapist for 20 months.  My prognosis for a full recovery is very good; however, things are fairly hard right now.

My PTSD cost me my job and my marriage.  I am employed again (as a web developer with a flexible schedule) and rebuilding.

I suppose I am writing just as a way to reach out to the nascent community of survivors of this special brand of torture.  I am not certain that many of us have survived into adulthood, or survived the PTSD if we did.  Others may not know the truth of what happened to them.  I think that many things are coming together now to help us all connect: the Internet, changing attitudes that allow old things to come to light, and the tendency of PTSD to manifest very strongly in one’s thirties–the age bracket of those of us in the “last wave” of infant surgery without anesthesia.

It is good to know that I am not alone.  The last six weeks have been especially hard.  Your blog has made it a bit easier.

Peace,

John

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.

Creativity can be healing (2)

The first still-available website I found that is dedicated to the sharing and exploration of our scars was Canadian Svea Vikander’s rich Life Lines blogsite and its associated sites.

When I discovered this address I knew I’d found a long-lost friend.  Here at last was somebody who (despite her rather different experience) understood and cared about a deeply hidden part of my psyche, someone with whom I could identify and link up in ways that had proved rare and hard to find throughout my 60 or so years.  It wasn’t hard to affirm and offer my support for Svea’s threefold aim for the project:

a) to address the oppression felt by people whose physical appearance marks them as ‘other’.

b) to encourage a safe (anonymous) exchange of stories and images about personal struggles to overcome illness, disease, accident, violent attack, surgical procedures, etc.; and finally,

c) to encourage viewers to reconsider their ideas about their own bodies, as well as the bodies of others.

Svea Vikander was excellently qualified to undertake the Life Lines project.  She was saved by abdominal surgery very early in her life, is a capable writer with training as a psychotherapist and in the visual arts, and so between 2006 and 2010 she collected the stories and images of more than 50 people who’d paid for their survival with the indelible marks of lifesaving surgery in infancy or later life, or from overcoming serious injury.  Svea launched the Life Lines project by show-and-telling her own story; she then interviewed and photographed some of her friends and acquaintances, and via the website she enabled anyone interested to narrate their experience and thoughts.  People from around the world responded, and she exhibited her collection in galleries and academic contexts as well as publishing it online.

In Looking at Life Lines Svea has posted some of her academic work in psychotherapy, with perceptive and clarifying exploration of our deepest feelings about ourselves and our imperfections, studied in the personal and societal contexts.

Fred - 1945

Tamara - c. 1985

She also reflected on several of her subjects’ narratives: in this essay Svea picked up on something that had also fascinated me: the very different feelings expressed by Tamara and Fred (and that’s me) about quite similar scars from the surgery for their common disease, infant pyloric stenosis.

Svea Vikander’s selection is quite wide, the interviews and writing sensitive and perceptive, and her photography is stark and powerful.  The Body in Writing is a small kaleidoscope of what others have written about their own and others’ feelings about their badges of surgery and accidents.

She concludes with this observation:

Contrary to popular belief, there is no clear correlation between the size or appearance of a scar and the psychological distress that it causes; generational divides have also been shown to indicate oppositional perceptions of scars’ appearances, meaning and importance.  As with other facets of bodily identity, the scar’s representation is fluid, determined by one’s location in place, time and larger socio-historical narratives.  Life Lines participants demonstrate their efforts to navigate the ever-shifting personal and social complexities engendered by bodily experience.

My Dutch roots enabled me to find and participate in a much smaller project managed by another pyloric stenosis survivor, Jennifer Jacobs.  Despite her Anglo-sounding name and the same being true of her Scarred not Scary blogsite, all the posts are in the Dutch language.

Jennifer’s comments convey goals that are are similar to those of Svea Vikander, if also more basic:

This site’s aim is to get us thinking more positively about scars.  This site shows scars instead of hiding them.  By talking about your scar you come to realise it says something about you.  Others should accept you, including your scars.  The more open you are willing to be about them, the less they will worry you.  And the easier others will find it to accept them.

For me, “coming out” among my family and friends, and more publicly still via the web has been the single most important part of my healing after a lifetime of struggle coming to terms with my pyloric stenosis scar and story.  I thank God for the internet and for the people who have welcomed me into what is really a world-wide and therapeutic community.