Tag Archives: counselling

An email from Sarah

A hardly-known fact is that many of the people who had surgery in infancy before the 1990s were not given a general anesthetic, and of these not everyone was given pain killers.  This awful fact has understandably been kept out of the public domain as much as possible, which was not very difficult before the advent of the internet and social media, but it is now reported and conceded by many.

frustrated01Giving a general anesthetic to infants in the first two years was too complex and risky for many doctors until the later 20th century, and because locally administered painkillers affect the tissue around the incision, many surgeons chose to have their infant patients simply intubated (given an artificial breathing tube down their throat) and then paralysed. It seems parents were rarely told the details of what infant surgery involved, and probably chose not to ask. After all, the life of their new treasure was at stake. Can we blame them?

Most medical students accepted the mantra that “babies do not feel or remember pain” and so surgical procedures ranging from circumcision to abdominal and chest surgery were often done without pain management – and without much further concern.

Several of my posts have been about the huge change forced on the medical establishment by the research, writing and advocacy of  Drs K J S Anand and P R Hickey since 1987.  (You can find these posts using the “Categories” Search-box at the top right.)  Together with their work, it also became clear that many who had had early surgery without pain control had struggled (usually lifelong) with post-traumatic stress.  The late Dr David Chamberlain, the late Dr Louis Tinnin, Dr Robert Scaer and others have studied, published material on pre-verbal memory and trauma, and developed therapies to treat PTSD arising from infant trauma caused by abuse, surgery, and tragedy.

One of the links most relevant to these matters is to the blogsite Restory your Life, published by my friend and blogging colleague Wendy P Williams.  Her blogging has concentrated on what has been written about PTSD after infant surgery, and on therapies that have been developed and found helpful.

But there is always more to be said and explored on this subject area.

This past month I received an email from Sarah, which I pass on with minimal editing –

blog-writing1Firstly, just wanted to say thanks for your great blog.  I have found a lot of reassurance and inspiration.  My infant trauma was different, but as you know there’s not a lot of info out there, especially written by people who have experienced it, so it’s been so helpful.  Also I’m sorry for what you went through and how it was (not) handled.  It’s great that you’re helping to make things better for babies now, I hope that also gives your young self some comfort.

I found some more stuff and you may already have it, but thought I’d send it just in case you haven’t.

The first is the book The Trauma Spectrum by Robert Scaer.  It has a really great chapter on pre-verbal trauma.  He also points out similar things to you about infant pain management.  It’s ridiculous to think babies wouldn’t feel pain.

The second is an article by Dr Bruce Perry, How we remember.  It’s about infant sexual abuse, but I think the principles are the same.

The third is a PDF written for caregivers of traumatised children and infants.  It’s by Dr Perry too.

Fourth, a book called Transformative Nursing in the NICU: Trauma-Informed Age-Appropriate Care by Mary Coughlin.  Can’t afford it and haven’t read it, but it looks like something all medical professionals helping infants could really use.

People think I’m kind of weird when they find out how much I think and read about trauma, so it’s sort of nice to ‘meet’ another person who has handled theirs in one similar way.

Well, keep up the excellent work, I wish you all the very best.

 In response to my emailed thanks and response, Sarah replied –

Of course you can pass my email on, and put on your website.  It’s the least I can do to thank you for your very much appreciated blog.  Thanks for introducing g me to Wendy’s blog, I really liked the artwork.  It was interesting hearing a little more about how you found healing, I somehow imagine a lot of us are big readers.  The networking is such a good idea, I’m glad you eventually managed to find more people.

I found another book, it’s called Pre-Parenting: Nurturing Your Child from Conception.  The relevant bit is about how even foetuses have consciousness, memory, feelings and other important things.  It has some amazing stories of very young kids accurately telling their birth stories when they learn to talk.  Interesting to think about what he’s written in the context of infant trauma.

Thanks and best wishes to you too.

Shhh02I had infant surgery to relieve a fairly common and fatal stomach blockage (pyloric stenosis) in the dim, distant and tongue-tied past; in 1945 most people didn’t talk about unpleasant matters.  So I know almost nothing about the operation and associated matters and had no help in coming to terms with their consequences.  It has taken me much of my lifetime to piece together the puzzle parts that tell me that whatever happened to me (and my parents) resulted in the clear symptoms of PTSD (albeit mild) with which I have struggled until recent years.

PTSD which results from something that happened in our infancy is lodged in our pre-verbal memory.  This makes it more complex and much harder to recognise, understand and treat than traumatic events which we can consciously remember.

Sarah’s emails and the references she has shared here underline that people struggle with PTSD caused by all kinds of events which they have remembered pre-verbally (in their “somatic” or body memory).

Sarah has also reminded me that all those affected by infant trauma share similar feelings and frustrations, and can draw on the same interpretations and treatment of our symptoms.

And finally, Sarah’s reference links make me feel encouraged that there are always more people than I had known about or imagined working to bring healing to those of us affected by trauma of infancy.

Recognising and treating the pain of long-ago infant surgery

Early this year saw the passing of someone I have never met but whose work has formed a very important landmark in my life, one I would not like to do without.

Dr Louis Tinnin

Dr Louis Tinnin

Dr Louis Tinnin was an American psychiatrist, therapist, medical school professor and reformer of the care of those affected by mental illness and trauma.  He died of congestive heart failure last February at the age of almost 82 years.  Interested readers can read an obituary online.

In 1992 Lou Tinnin began to research new approaches to the healing of trauma sufferers, and four years later, now retired, he set up the Trauma Recovery Institute (TRI) with his wife Linda Gantt.  This was a clinic based on his findings and new therapies.  In 2006 the TRI was closed and the two set up Intensive Trauma Therapy (ITT), an institute committed to the research of trauma, to its treatment and to training therapists.  Lou and Linda became known as “Ma and Pa Trauma”.

I have posted about Dr Tinnin on this blogsite several times in recent years.  For the countless people like me who have been affected by trauma but are unable to benefit directly from the ITT’s programs, the ITT’s website has been very informative and generous, and it was linked to Dr Lou’s blog – which I’m very grateful is still online.

This blogsite is not a large “read” but is a “must see” for anyone who has had infant surgery, especially if this was before 1990, and if they struggle with mystery symptoms which may have resulted from trauma.

Wendy P Williams is my blogging partner on the effects of infant surgery and the treatment of trauma-caused dis-ease; she has also posted a tribute to Dr Tinnin and it is well-worth reading.

How have I been helped by Dr Tinnin’s work?

Like many others, I developed infant pyloric stenosis (a form of stomach blockage) and had surgery, in my case just 10 days after my birth in 1945.  My parents must have been so traumatised by this that they would never talk about it to me.  Much infant surgery was shockingly crude before the transformational work and writing of Dr K J S Anand in the later 1980s about which I wrote (again) in my previous post.

Anesthetising under 2 year olds was especially hazardous before the advent of current materials and methods, and so doctors were taught and spread the mantra that “babies don’t feel or remember pain”.  It is now known that this rough-and ready surgery is indeed not remembered by the conscious memory, but is recorded as trauma by the sub-conscious or body-memory – in another way and by another part of the brain.

Added to that early operation, I was affected by some 2 weeks of maternal deprivation during the standard recovery period in hospital when mother and babe were kept separated to minimise the risk of infection, and by my growing up with my parents unable or unwilling to help me with my internal turmoil.

How this kind of trauma affects people in their growing and adult years is remarkably typical, and deeply troubling.  I experienced that.  Before the internet made it possible to share stories and compare notes, I and those like me were left to ourselves in isolation, feeling “different”, troubled, even wondering if we were crazy.

1          Dr Louis Tinnin’s blogsite tells of his “search for tell-tale characteristics of adult victims of infant surgery without anesthesia”.  Here at long, long last was a medical doctor who
(a) did not deny the past practice of infant surgery without anesthesia,
(b) described exactly all those troubling feelings and weird hang-ups with which I had struggled for most of my life, and
(c) gave hope: there were therapies, treatments and places where people like me could find a way forward.

2          Dr Louis Tinnin’s blogsite also shows very clearly how he made himself accessible to people like me.  Just look at the 75 comments (to date) below his key post.  His patience, humility and faithfulness in responding to the questions and comments I and others like me had was truly exceptional, in fact unique!  As mentioned in my previous post, in recent years several people have shed valuable light on recovering from old-style and crude infant surgery, but only Lou Tinnin has made himself so available.

Thank you, Lou Tinnin!  We miss you but you have left a legacy that will not be soon forgotten.

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.

My pyloric stenosis obsession

Spring has come again to the southern half of the planet Earth, and with it the season for beach walks and swimming (my favourite forms of exercise), and for barbeques, a fun if not always healthy way of sharing a meal.

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Wooloomooloo Bay on Sydney (Australia’s) iconic harbour includes one of the city’s swimming pools, popular picnic spots and jogging routes, a finger wharf converted to elite homes, a marina, the Botanic Gardens, and the Art Gallery. Something for almost everyone.

But my worst area of obsessive-compulsive disorder (“OCD”) has also responded to the rise in temperatures!

Wikipedia tells us that with an anxiety disorder, persistent, intrusive thoughts produce uneasiness, apprehension, fear or worry (or obsessions).  Repetitive behaviour develops, aimed at reducing the associated anxiety (compulsions).  The disorder may show as excessive washing or cleaning, repeated checking, extreme hoarding, preoccupation with sexual, violent or religious thoughts, relationship-related obsessions, aversion to particular words, places or numbers, and nervous rituals such as opening and closing a door a certain number of times before entering or leaving a room.  How many of us don’t struggle with some odd habit or even a full-blown obsession?  It is believed that a third to half of adults with OCD report a childhood onset of the disorder, suggesting that such anxiety disorders can continue across our lifespan.

In my case, yesterday was the 69th anniversary of my first surgery, a very early operation in very different time which I had to remedy pyloric stenosis, a fairly common stomach blockage.  This surgery certainly saved my life but it also left me with a relatively mild but nevertheless vexing and indelible form of post-traumatic stress disorder (PTSD) and also with an obsessive-compulsive disorder (OCD).

This post is devoted to this aspect of my inner life, but not because I revel in it (“pity me”) – in fact, only my most immediate family and those who read my posts here know about it.

The reason for this post is that so many PS survivors I have “met” online share my pain in a variety of ways, and until the web enabled us to share this trauma, many of us struggled with yet another obsessive fear : that we were “different” and “strange” because of our PTSD and OCD.  The web has made possible all kinds of community, and countless infant PSers have found information, reassurance and help thanks to blogs like this one and to networks like those I have mentioned in my most recent posts here.

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This scene I captured of some of my family at Sydney’s harbour heads is typical of early summer.  But notice the sunlovers on either side of our group… Since I can remember, one weird reason I really like a beach or coast walk is so that I can scan lots of bare midriffs for anything like the 10 cm scar on my belly.  And believe me, I am not alone in this.

In my younger years this was a blind obsession; I have slowly realized why I learnt to do this from such an early age and why it has seemed to me impossible to shake off.

One of the first things human babies start doing after their birth is to scan their admirers’ faces (especially the eyes and mouth), first to learn to recognise those nearest and dearest, then to “read” those faces for approval (or otherwise), and then to learn how to mimic sounds and speech.  In other words, babies are programmed to seek and belong to a community.

At a different level, it seems that I and many like me were and remain hungry for a sense of community based on our deep and uncomfortable awareness that in certain everyday summer situations our body looks different.  Other people must have thought so too by their looking, pointing, asking questions and making comments we could not handle when young.  It needs to be added that my parents could have helped me but (notably in those long-ago days) probably did not know how to.

The combination of deep seated feelings, traumatic experiences, and repeated damaging ways we responded to these can give rise to OCD, and often even the best available counsel will not bring much change, the more so after many years when the brain’s pathways (learned behaviour) have become established.

So at the beach or pool, or sometimes when reading a magazine, my eyes are in scanning mode.  Hardly immoral or threatening – but a major nuisance I’d love to be without.  And on the positive side, when I do find a person with a body scar, I feel a sense of identity that over the years has yielded some good friendships, occasionally some very helpful mutual discoveries, and always a reminder that I am after all not unique in my being “marked, different and “damaged”.

OCD affects people in other ways too.  Recently my fellow PSer and blogging partner Wendy Williams wrote about this subject, and I identified strongly with what she mentioned about triggers, another way in which OCD shows itself.  We survivors can develop very deep feelings about a scar that we have always had, which for whatever reason we did not learn to embrace from the dawn of our awareness, and of which we are daily reminded, sometimes in ways that upset us.  I “see” images of my scar in many places, ranging from patterns on clothes and buildings to occasionally the contrails of jet aircraft.

140829-13smlDuring our recent family visit to the Netherlands, we were walking around a lake which included an adventure playground: I looked inside the entrance and instantly my attention was locked onto a small tent – for no other reason than that the markings around its “door” represented to me … what?  I saw what my little baby-belly must have looked like 69 years ago to this day.  Click on the photo if you cannot see what I saw.
Now, is that a pleasant, useful or interesting discovery?  It’s not something I wish on anybody – and that is the nature of OCD – uninvited, unhelpful, unpleasant, useless but inescapable.

 

141001-04e-smlBack in Australia I was given the tools for a barbeque last week when we had lunch in a national park with our family.  The thick sausages were still frozen, so after some initial sizzling to firm up the outer meat we decided to slice them open to ensure they were well cooked right through.

image2Immediately the realization: this is almost exactly what the surgeon did to open up my stomach’s pyloric muscle all those years ago: cut through the outer layer (but not too deeply, keep the gastric passage intact), spread the slit to open up the inside (to allow the gastric canal to reopen), and extend the cut towards both ends to be effective (but again not too far: don’t damage the stomach and duodenum ends).

Again: is this photo and what it represents helpful?  pleasant?  useful?  Yet the link was inescapable to me.  And no, I didn’t tell my wife exactly why I wanted her to take that photo!  Of course, if another aspect of my obsession had not prompted me to find images of the Ramstedt pyloromyotomy operation and watch online videos, I would be unaware of the connection between my barbeque and my first surgery.

My OCD makes its continuing presence felt in other ways also, as I have mentioned in other posts and on the “My Story” page of this blogsite: with certain words, images, places and people. However, I am grateful that these various triggers now trouble me a lot less than they once did. I have come to understand and embrace my story and what came with it.

*     *     *

OCD is a pain!  But my friend and colleague Wendy summed up the positives very beautifully:

Though triggers are frightening, they are teachers.  Through them, we understand ourselves.  We discover where we still need to heal.  And we go where we are led to find more freedom from trauma – to become more of who we are, and have always been, at our core.

Pyloric stenosis hits new parents hard

Bear with me as I again reflect on the horrible pain parents endure when their newborn pride-and-joy –

  • becomes horribly unwell, unable to keep down any nourishment,
  • loses instead of gaining weight and condition,
  • causes them to find (as many do) that their usually trusty doctor n be terribly condescending and dismissive (“typically anxious  new parents,” and “try another formula”), only to be told by another voice in the medical machine, “I’m sorry but your baby is close to death, you should have brought him / her in much earlier… you’ll have to submit your baby for surgery.”

A few days ago my family marked the centenary of my father’s birth, and I dug up some of the 1945-vintage documents he left me, including (1) his receipt for paying somebody to announce my birth to the town notables, and (2) a short letter he wrote to his parents on the day after my birth.  Both are clear evidence of the extreme joy, excitement and pride my parents felt after many years of waiting to start a family.

Baby unhappy01What happened immediately after that has been wiped off the record: I have no documents, no letters and no stories about my pyloric stenosis (PS).  It must have been only a day or so after these carefully conserved sheets of paper were written that I started to throw back everything my frightened mother gave me.  Ten days after my birth their tiny frail baby was tied down on a large operating table in a nearby city hospital.

After many years I can well understand that my parents did all they could to delete the PS page of my story from their lives.  But their doing this did not help me to come to terms with my story, nor my understanding and managing the distress of PTSD that resulted.

What has helped me understand and accept my parents’ pain has been what others have written about the intensity of what they endured with their baby’s sudden and violent sickness followed by surgery.

One such account was written early in 2013 by a British father who like my father is a church pastor and who like my parents went through PS quite unexpectedly and with their first child, also a boy.  Under a powerful title, When your son goes under the knife – a dad’s experience, Roy Summers wrote –

Child under the knifeIt is one thing to be in hospital for a personal operation as an adult, but quite a different experience as a parent of a child.  As a general rule my family of six have enjoyed remarkably good health, for which we thank God.  We had an early scare with our firstborn, who had pyloric stenosis as a baby and was only a shade away from death; but apart from the normal scrapes of family life the Lord has granted good health.

Roy Summers then reflected on what he has learnt from a more recent experience, when another of his sons suffered a ruptured appendix and complications after the operation.  I recommend going to Roy Summers’ post and reading it in full, as I regard it as portraying a thoroughly human response to inner pain and beautifully integrated with Christian faith and pastoral care.  I would like to pass on the main headings to whet the reader’s interest in what Roy and his wife Yvonne learnt.

  • The last kiss?
  • Trust – placed Where?
  • Why was the first operation not “successful”?
  • How often and passionately do we pray the more important prayers?
  • Why didn’t God answer a little boy’s prayers?
  • Thank you for the medicine

Roy goes a long way beyond merely writing (as many such parents do), “This was the worst experience I have ever had!”  I am grateful to him for this.

parent-talking-to-childAlthough many of the details of this father’s experience and reflections are related to his son’s appendicitis and peritonitis operation and are therefore somewhat different from those he would have had when his first son had PS, the emotions, questions, Christian response and character-shaping issues are exactly the same.

 

When infant surgery causes ongoing trouble (3) – signs of PTSD

If you had surgery as a baby before the 1990s, it is quite possible this has resulted in undiagnosed post-traumatic stress disorder (PTSD), with its clear symptoms probably undiagnosed.  The general belief that babies don’t feel or remember pain was conclusively challenged in 1987 and thereafter gradually abandoned (see my previous post).  Until this research was published much infant surgery included the use of a paralysing drug to keep a baby still but it gave the baby no general anesthetic because of its hazards.  Some local numbing or a sugar cube was all the infant was deemed to need.

PHowever, the symptoms of PTSD caused by infant surgery may be hard to diagnose.

Problem #1: Very few if any of us have conscious memories of our first years.
Problem #2: It has been established that a traumatic event of even very early infancy will affect the body (“somatic memory”) for life in ways similar to how conscious memories affect us.
Problem #3: Some of the signs of PTSD are similar to certain character traits.

So diagnosis takes special care, awareness and thoroughness.

The work and therapy of Dr Louis Tinnin is very important in this regard: his post on infant surgery is a “must read”, together with the lengthy discussion that follows it.  This is Dr Tinnin’s paragraph on the possible symptoms of PTSD after infant surgery –

Adult survivors report life-long symptoms of anxiety (constant nervousness and spells of terror or panic), hostility (temper outbursts and urges to smash or break things), depression, self-consciousness, distrust of others, and a high vulnerability to stress.  The life-long aspect of these symptoms leads to the faulty clinical perception that they are personality disorders instead of recognizing them as persisting reactions first elicited by the brutal surgery.  That recognition opens the way to curative treatment of the adult survivor.

He then adds 10 diagnostic questions –

1)      Did you have an infant operation before 1987?  If so, what was it?

2)      How old were you then and how old are you now?

3)      Do you feel it has affected you over the course of your life constantly, only at times, or not at all?

4)      How would you describe your symptoms or if no evident symptoms then your quality of life in general?

5)      Had you connected the operation with your symptoms and if so how did you make that determination?

6)      How long have you been aware of this connection?  If not aware have you suspected there was something deeper at work in your life that you did not understand?

7)      Have you sought treatment and if so what kind?  How did you feel about its effectiveness?

8)      Was the operation ever discussed with you, as a child, as an adult?  What importance did your parents or caregivers place on its possible long-term effects if any?

9)      Have you ever considered suicide?

10)  Do you believe your life can improve with proper treatment?

In a Comment on this post, one of the people greatly affected by his early surgery for pyloric stenosis (PS) “fleshed out” Dr Tinnin’s information with his own experience –

  1. ponderWondering “why”.  Why did they hurt me?  Why did they keep me away from my mother and father?  Did I do something wrong which caused me to be punished?
  2. The last question has led me to blame myself and conclude that there must be something wrong with me.  Otherwise, they would not have tortured me.
  3. Extreme sensitivity to criticism.
  4. Fear of abandonment.
  5. Heightened fear of death and all things associated with it like hospitals, doctors, nursing homes.
  6. Desire to hide or disappear in stressful situations and fantasies of invisibility – in hopes I can escape notice by those who wish to do me harm.
  7. Withdrawal tendencies, especially in crowded rooms.
  8. Introversion.
  9. Difficulty with small talk, initiating conversations.
  10. Submission to authority figures.

I have found it unusually difficult to self-diagnose.  We need to be involved in another’s diagnosis of our personal health or other problems, but we need somebody else who knows us well and knows their subject well to walk with us in diagnosing PTSD after early surgery.  Allow me to reflect personally.

I must answer almost all of Dr Tinnin’s 10 Questions with my “Yes!”

The same is true of 10 points which the doctor’s Comment-poster has listed.

But ticking these two lists is not necessarily conclusive, as the 10 questions and fears are fairly common also among people who have not had old-style surgery in their infancy.

And to make matters still more complicated, I have a grandson who is developing more than a few of the same challenges and has been diagnosed with Asperger’s Syndrome in the Autism spectrum of disorders (ASD).  And I recognize myself in many of my grandson’s issues.

However, we must add to this that I have found several websites and forum discussions which suspect some link between PS and ASD, and it is known that children with ASD can often largely overcome or manage their symptoms when given loving and sensitive care and guidance through their growing years.

So where do I think I stand?

PS is always recognised as being multi-factorial: it may be caused by one or more of genetic, maternal, biochemical and environmental factors – and quite probably this list should be longer.  I suspect that my personality and life challenges are similarly rooted in several aspects of who I am and what has happened to me, including not least that early and rather rocky time when I developed PS and probably had some fairly rough surgery and after-care.

It would be helpful to hear from others who had a similar bumpy start to life and can also find themselves in the two lists I have quoted above.