Are infant surgery and PTSD linked?

Many of us dismiss the possibility that our adult well-being can be affected by anything that happened to us in our first weeks.  After all, how many of us remember, let become nervous and unsettled, by thoughts of our short but uncomfortable passage into the big, bright and breezy world?  Or by having our umbilical cord cut, or possibly by our circumcision?  In fact, not many of us can remember anything before our 4^th or 5^th year.

More worryingly, at least some in the world of medicine thought as much until quite recently.  The many published medical journals I have read seem to show that general or local anesthetics, although crude by today’s standards, were commonly used with infant surgery, even back in the 1920’s.

But these reports also show that at least some surgeons did not bother with pain control, at least until the late 20^th century.  After all, local and general anesthesia each had disadvantages, and a baby wasn’t affected by pain.  That’s how many doctors spoke to anxious parents.  These doctors used sugar cubes or alcohol to pacify the baby-patient, strapped it firmly to a timber frame, and closed their minds to the screaming and body language of agony as they went about their work.

And so infant surgery, especially in smaller local hospitals and at the hands of certain surgeons, could be “rather basic” in the days before these kinds of procedures were centralised in large and specialist children’s hospitals, and before the development of our current understanding of infant sensitivity to early starvation, severe pain, maternal deprivation, and the long-term effects of early trauma.

Very early in my life I underwent surgery to remedy pyloric stenosis (PS).  My parents would never talk about this for reasons I can only guess at, and they chose to dispose of any medical records they might have had.

Not unexpectedly, I have felt a deep-seated need to understand as much as I can about this mystery-ridden and hidden early chapter of my life, so I have read widely and come to some tentative conclusions:
1)  My surgery was done as sensitively as was possible in 1945 (as we say now, “world’s best practice”),
2)  I was affected in several ways by the severe malnutrition and dehydration that all-too-often comes with PS,
3)  My mother and I were affected by probably two weeks of maternal deprivation during my post-surgery hospitalisation, and
4)  As I have explained in earlier posts, I find no reason to doubt that I have been affected by the above circumstances and their flow-on effects on me and also my parents.

From what I observe, far from everybody who has experienced very early surgery is living with clearly recognisable long-term effects.  Is this because many don’t recognise or care about the symptoms or because they choose to ignore or live with them?  All things considered, we surely know many troubled people whose problems could be related to trauma.  I think of people who abuse physically or emotionally, those who have an anger management problem, and folk who seem to run into trouble with anyone in authority.  Are we sitting on a mountain of personal and social problems linked with formerly routine male circumcisions and the occasional life-saving but also hazardous infant surgeries?

It also seems to me that my PTSD has been brought out or exacerbated by my genetic make-up, personality, and / or my complex relationship with my parents.  I am reminded from time to time that our understanding of PS, the infant mind, trauma, and genetics are “works in progress”.

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My infant surgery and PTSD

For most of my life I battled privately and secretly with what I have recently come to recognise are the symptoms of post-traumatic stress disorder (PTSD).

One thing I knew: that the weird and unwanted urges and emotions deep inside me were the result of having had pyloric stenosis (PS) and an operation to correct it as a baby.

But why the never-ending internal turmoil?  Many people I knew had had surgery and it seemed to have no lasting effects.  In time I got to meet a few people with a history of the same infant condition and surgery as mine… but did they feel the same inner pain?  Unsurprisingly, I saw no obvious evidence of this, and I found it far too daunting, even unwise at the time, to ask.

As I grew up, I came to decide that my parents and my four siblings were different from me.  I must be unique because I alone was scarred, and hypersensitive, introspective and self-obsessed about it.  I tried to train myself to be more positive, confident and outgoing, but to little or no avail.

In adulthood I was helped by the safety of my secure marriage and my sensible family.  I slowly came to terms with my disfiguring and obvious abdominal scar so that I no longer hid and foolishly denied having it.  But modifying my inner emotional life and moving beyond the inner turmoil were another matter: I continued to battle with symptoms (albeit mostly mild ones) of anxiety, distrust and even hostility towards people in authority, self-consciousness about my scar and at the mention of certain words, and difficulty dealing with conflict and stress.

Although my family was 100% reassuring and accepting of me and of the very little of this anxiety and inner turmoil which they could see, I myself remained in the dark about the nature and cause of what only I knew was going on inside me, and thus hesitant (to say the least) to be more open about it.  I was a freak and just had to live with that, I felt.  My wife would have wanted me to get on with real living, and the few fellow PS sufferers with whom I tried to “connect” via the internet denied they had any problem, ignored me, or told me to get some counselling.

In 2006 I came across an invitation for people who had had infant surgery and their parents to get in touch if they had issues which might be the result of this part of their life story.  I responded and found someone whose struggles and symptoms were an almost exact mirror image of mine.  Three months of tremendously revealing email traffic added depth and reassurance that I might not be so unique, weird and lonely after all.

Three years later I read a brand new blog that once again resonated immediately and powerfully with my inner self.  Email correspondence once again confirmed that my experience, which whilst certainly not inevitable after infant surgery, was far from unique: once again I had found somebody whose inner struggles were largely similar to mine, and had in fact been even more scary and disruptive.

During the three years since 2009, my co-blogger Wendy Williams and I have discovered a growing list of people who reported or showed a similar story to ours.  Most declined to explore this and some tried but found it too threatening.  It left us wondering how many people with stress-type problems might be nursing PTSD of one kind or another.

We have also discovered journalists, researchers and therapists who have recognised and helped shed light on the possible traumatic effects of infant surgery.  Material relevant to this subject started to be published some 30 years ago by researchers and advocates such as Dr K J S Anand, Terry Monell, and the The New York Times (1980s), by Dr David Chamberlain (1990s) and more recently by Dr Louis Tinnin.  Interested readers are encouraged to follow the links and search the web for other relevant material.

Bloggers like Robert Clover Johnson, Jolene Philo, Wendy Williams and me (here) have unwrapped and explored the trauma and related issues that can result from infant surgery.  We are heartened by the responsive comments and contributions we have received, and realise that much advocacy and education remains to be done.

Much has changed for the better in recent years for those of us indelibly affected by infant surgery and its causes, methodology and after-effects.

• Like others I have found that too much time has passed for me to discover the exact circumstances which gave rise to my PTSD: our medical records were destroyed and my parents died long ago.  But largely thanks to the internet, medical information and journals have become far more accessible and these have enable those interested (like myself) to explore and reconstruct much of our story.
• The facts about long protected secrets of the medical world (such as infant surgery without anesthesia and analgesia because “babies don’t feel or remember pain”) have at last come to light.
• The workings of the human mind and the nature and causes of PTSD remain complex but are increasingly well understood, and it is realised that trauma can affect not only returned military and accident survivors but also children and even infants.
• Although I will never know the exact cause of my problems, I now realise that I could well have been affected by any of the starvation that PS brings, by the surgical techniques employed (especially in earlier times), by the two weeks of maternal deprivation normal during hospitalisation in my time, by my parents’ own trauma which affected my ability to embrace my story, and by my personal response to any or all of the above.
• Understanding my story and my “freakish” inner pain, together with the formation of a community of those who share and identify with the trauma – these have been unimaginably reassuring and healing for me.

Pyloric stenosis – and the cross of Christ

Regular visitors to this blogsite probably know that for almost all my adult life I have been a Christian pastor and preacher – and even a mission administrator and church historian, all good tutors in many ways.

Not until after my retirement did I think of working out how the story of my escape from death at 10 days old by pyloric stenosis (PS) could be used in my work as a Christian teacher.

I have often mentioned how thankful I am towards God for this gift of my life, to my parents for what they endured, and to the medical people who did their best for me and countless others under tough (1945) conditions and using rather basic surgical techniques and hospital routines.

I wanted to avoid repeating the truths that we might expect Christian PS survivors to utter: that life and all good things are gifts of God, and that both nice and ugly things can be used by God to build compassion and character.  All true, but…

Two posts earlier this year got me thinking.

Chris Welch blogged about his PS, arguing that the Christian church has PS: it enthusiastically drinks in the death of Jesus on the cross as the means of God’s forgiving us, but vomits out the “we are crucified with Christ” bit.  “All gain – but no pain please!”  True?

Then Wendy Williams wrote about her English students reading and reflecting on some of her myincision posts, and their at times soul-searching, heartening and affirming responses.

Two Sundays ago and following the Church’s agreed Lectionary (3 year cycle of set Bible readings), I spoke about Jesus’ meeting with Nicodemus (see John’s Gospel ch. 3 vs 14-21).  I spoke from the heart more than from prepared notes, and said something like this:

Although the Bible often talks about God’s judgment, it is significant that when Jesus talked with Nicodemus he spoke only of personal choice.  Don’t blame God or deny the obvious, we judge ourselves, the verdict is in our hands.

Jesus referred to the bronze snake Moses had to put on a pole and commend the people to look up to it as a sign of their decision to trust God rather than grumble.  Some trusted their leader Moses and survived.  We are told that those who did not died.

Jesus linked this old story with his approaching death on a cross: “This is like the way I will be lifted up in crucifixion so that that whoever puts their trust in me won’t die but have life.

A snake and a crucifixion are ugly things, and people can argue they don’t need that, that I’m living an OK life and don’t need God or forgiveness or Jesus to die a horrible death for me.  But by the snake and the cross, God says to us, “sin” IS an ugly word but it’s real.  Trusting God, or a bronze snake or a man dying on a cross may seem silly, even ugly ways to deal with my failings, foolishness and imperfection (summarised as “sin”) – but the choice is ours.

Soon after I was born, I had an operation to save my life, I was vomiting myself to death, my parents were told I needed this surgery, and I was too young and small to spend time looking for alternatives.

When I was younger I hated the scar I carry, and felt ashamed and embarrassed about it.  But I’ve come to realise that what is ugly may be necessary if I want to be here today.

In reading about what happened to me I came across the story of one family from about the same time.  Because the parents hated the idea of surgery, they lost 2 sons to the same problem as I had.  When the third child had it too, they decided he’d have the operation, and he survived.  These parents learnt that when you have this condition, it’s no use hating an operation, a permanent scar on your baby, or blaming the doctor for what he said, or blaming God because your prayers were not answered.

For me what is hated and ugly is now a picture of an important truth.

John tells us that Jesus said:  Whoever believes in him is not condemned, but whoever does not believe stands condemned already because they have not believed in the name of God’s one and only Son.  This is the verdict: Light has come into the world, but people loved darkness instead of light because their deeds were evil.  Everyone who does evil hates the light, and will not come into the light for fear that their deeds will be exposed.  But whoever lives by the truth comes into the light.  (vs 18-21)

Don’t blame God for a problem that cannot be denied or avoided: Jesus says here that the choice as to what we do is ours.

After the church meeting (of some 50 people) one man told me that he’d also had the operation for PS.  He detailed something of the circumstances of his surgery (about the same time as mine) and was grateful for the way I’d been able to link it with Jesus’ teaching about the cross of Calvary, an ugly but life-giving truth.

It all made me realise again how supportive belonging to various communities is for us all: especially when we can get them to intersect.

Here today, not always gone tomorrow

Having surgery as a baby can have ongoing effects: immediate, middle and long term problems are far from unusual.  This is more often the case with the most serious forms of infant malformation and malfunction like a congenital diaphragmatic hernia, a gastroschisis, or Hirschsprung’s disease.

But even relatively simple problems such as infant pyloric stenosis (“PS”), the most common reason for infant surgery in the first weeks and months after birth (as well as one of the easiest to remedy), still today all too often cause ongoing frustrations – for the parents at first and for patients in later years.  As I have mentioned in a recent post, this gets little to no attention in the countless medical articles and reports which are available online.

After the surgery

As we are routinely informed nowadays, there is a list of risk factors associated with all surgery, such as a failed procedure, collateral damage, infection, the anesthetic, problems affecting the lungs or heart, allergy, and wound rupture. With PS surgery these are not common but any setback is unexpected, unwanted and upsetting when it occurs.  Hernias are fairly common after some of the surgical techniques used to treat PS.

It is not abnormal and to be expected that in the days immediately after PS surgery, some vomiting continues.  The swelling and bruising inevitable with surgery usually take a few days to subside enough for the finely tuned gastric apparatus to resume its normal functioning.

The first years

But it’s also quite often that a milder form the vomiting or various degrees of reflux continues for months or even years.  In this, there seems to be little difference between PS babies treated surgically or medically.  Babies treated medically often need years or a lifetime of patient (but not critical) care, and sometimes decide on surgery after all.  After infant surgery, it may be hard to establish if the vomiting is due to the original PS, the operation, or the baby’s constitution or diet.  When the baby’s life has just been saved, who wants more tests unless they are absolutely necessary?

Many parents report any of a considerable list of frustrating behaviour, failure to thrive or gain weight normally, irritable bowels, and pain being the most common complaints.  Sometimes these mask other perhaps unrelated but chronic and certainly nasty problems such as Crohn’s disease or ulcerative colitis.

Informed parents know that the early years of childhood can be trying, but one only has to read some of the many parent reports on the web to sense how frustrated parents can be when their pediatrician has brushed off any further complaints, dismissed the possibility of ongoing health problems after PS surgery, and bulldozed the anxious parents with stories of PS babies who grew up to be tall, handsome, thriving and sporty people.

Parents who have a baby or growing child with continuing worries after surgery like that for PS need to do several things –

1              Read the available information on the web and compare notes with other parents on web-based forums.  Be as well-informed as possible but evaluate what you read: every baby and every child’s constitution is different; does or could this parent’s report really apply to my child?

2              Consult with a reputable pediatrician and be (a) reasonable with the doctor and realistic about your child’s problem, (b) insistent on your case being treated with respect and due diligence, (c) prepared to get a second opinion or see another specialist.

3              Don’t go alone if you think you may need support to present your case calmly and firmly.

If you and your closest confidant feel secure about your doctor’s explanation or recommendation, trust them and follow their advice, even if it means waiting patiently for further developments.  Many PS parents have seen their baby rescued from near death by dehydration and starvation, and in the process their faith in the medical world has sometimes taken a beating.  However, we must trust and hope (sometimes against the odds and always with discernment) that the medical world doesn’t allow many infants to die in our times and while in their care.

Adult life

Especially those people who, like me, had infant surgery long ago are quite likely to have continuing problems throughout their lives.  Such problems are perhaps hard to link scientifically (read: beyond reasonable doubt) with PS or its surgery.  But we read such stories so frequently now and they have so much in common that those involved find the silence of the medical literature deafening.

1                    Physical problems in later life in the area of the surgery scar (such as bloating, irritable bowels, other discomfort, or pain) are usually caused by adhesions which result from the operation.  Sometimes they are caused by the discomfort from other abdominal problems in later life, possibly masked by the scarring or adhesions of their PS surgery.
Search the web or read my four posts on Scars that Strangle for more details on what adhesions are and their effect and treatment.
Because finding the cause of abdominal problems can be so complex and trying, and because many doctors believe the textbook mantra that PS surgery is always successful and without long-term effects, those who have problems often find it almost impossible to get a hearing, let alone help in finding their actual cause.
As I wrote recently, the only medical interest in the long-term effects of PS that I have found has been a small number of articles about the effects of PS on growth, mental development, or stomach function.  Despite finding some significant (though far from universal) effects, these reports dismissed their findings as “insignificant”.
Conclusion: it may be difficult to get help for a problem which to the adult patient seems it may be connected with their infant PS or its surgery.  From what I have read, if you cannot live with the issue and when it’s hard to get help from your GP, the best course is to ask to be referred to a suitable specialist in gastroenterology.  And insist if you need to.

2                    Emotional problems in later life after PS and its surgery seem to be fairly rare, and will probably disappear in time as better, more developed techniques of hospital care, anesthesia and surgery have now been fairly standard for several decades.
However, I suspect that non-physical consequences are more common than is generally recognised.
It seems to me that PTSD (post traumatic stress disorder) in any of its many forms is at the top of this list.
But who of us hasn’t had some traumatic experience that has continued effects on our body or mind?  Many of us are able to live fairly well despite memories, obsessions, physical quirks, occasional outbursts, times of sadness, etc.  And most of us can live a fairly normal life as seen by others, whilst we often deeply troubled by what’s happening on the inside.
I know this from personal experience, I have close links with others of whom this is true, I have networked with yet others of whom this seems to be true although acknowledging it is just too painful for them, and I sometimes wonder how many “difficult” people I’ve known in fact have an underlying PTSD.
This is the subject for another post.

When I read that infant surgery and pyloric stenosis as many including me have experienced them in the mid-20^th century is “nothing” and “here today, forgotten tomorrow” – I wish that it could be so easily dismissed.  Despite my gratitude for a long, happy and productive life.

Helping parents in pain

Parents whose baby has had to be go to surgery for conditions like Pyloric Stenosis are agreed on one thing: this was the hardest time of their lives.

It’s so sudden and overwhelming

Surgery comes to some babies in a crisis.  Some conditions with which we are born need immediate correction.  Others like pyloric stenosis (“PS”) which I had and which apart from hernias is the most common condition of infancy requiring surgery, arise at varying times during the days, weeks and months after birth.  Others again like a cleft palate can be dealt with at an appropriate time.

I had PS at 10 days (and some have it even earlier than that) and it would have been a heavy blow to my parents.  They had been though a very hard time during World War 2, PS wasn’t (as far as I know) in the family, and they had probably never heard of it despite it being fairly common: many parents only learn about PS when their baby is in sudden and deep trouble.

PS becomes a “shock and awe” experience, again unexpectedly and suddenly for many.  Sometimes the vomiting becomes more frequent and violent over several weeks, and sometimes it is so mild that the baby can be coaxed through it without an operation, possibly with medical drugs and guidance, and certainly by careful feeding and much patience over several months with a sicky baby.

But in my and a fairly large minority of cases, the PS started early and the severity was obvious from my weight chart.  How utterly distressing it must have been for my parents to have their long-awaited first baby vomit everything with a force that by many accounts can cause much mirth later (“I would puke across the room”) but which for them meant that their baby was vomiting himself to a quick and ugly death?

If PS causes considerable weight loss in the first month, surgery is usually the only real choice: the baby is too small and frail for a time trial and the possible failure of the medication option.

My parents would have had no time to prepare.

It’s often hard to get a good diagnosis

Although my parents maintained their traumatised silence about my sickness to their graves, I have been able to research and conjecture towards a fairly plausible reconstruction of what happened.  One of the reassuring things is that their doctor apparently did not mess around with his diagnosis: within a few days of my weight chart dropping it was on the rise again and my first operation was over, all within my first 10 days.

This sadly is far from what many parents experience with PS today.  Why?

Because the medical world is so vulnerable to the legal liability culture prevalent in many countries today, because there are some dozen medical conditions in babies which involve vomiting, because no parent wants to hear that their “baby didn’t need that operation after all”, and because of the patronising ethos of far too many doctors.

The effect on parents can be very distressing and quite unforgettable.

The medical world can be so cold and clinical

How would you feel if you had been physically and emotionally scarred by a PS operation, as perhaps had others in your family circle, and you had successfully raised several other children through their infant years – only to be told that you’re being over-anxious, or that PS doesn’t occur in later babies or in baby girls, or (in as many words) that “I’m the doctor and I know better than you”?

Many parents report having received good, caring, informative and sensitive help from their doctor and specialist, but understandably and sadly, the great majority of reports on the web about PS diagnosis are from very frustrated and disappointed parents.

There have been some very telling and poignant stories written by medical doctors about their experience as a patient with a serious illness.  How would it be if all doctors had to submit to an actual (not simulated) patient experience as part of their training, and if pediatric specialists had to meet with a selection of parents who had been through a hard time when their baby or infant had had surgery?

An operation on my baby is scary

Having to hand my baby over to a nurse, anesthetist or surgeon is much, much harder than submitting to surgery myself.  Just read with me the numerous accounts from parents who have done this: as one they say, This was the hardest thing I’ve ever had to do.

I have had several surgical treatments during my adult life and they come nowhere near being “traumatic”.

Younger readers must also realise that the way infant surgery was done mid last century was quite crude and distressing compared with today.  Very basic or even no pain control, large disfiguring incisions and stitches, lengthy and isolating hospitalisations… look up my recent posts on the relevant decades.

Some of the parents who posted about their experience with a PS baby said they were greatly reassured by the comprehensive, careful and patient explanation of the baby’s condition, of what the anesthesia and the operation involve, and of what to expect during the recovery period and the following days.  Knowing and preferably having a little time with one or more people who have been through the same experience is also most helpful.

“Positive psychology” is increasingly advocated today as an effective way of managing predictable traumatic events (like war) that often result in debilitating PTSD.  Essentially, it means working through what can be expected to happen and teaching management strategies.  How I wish my parents had been helped by “positive psychology”!

There is a tendency for some parents and doctors to belittle the experience of infant surgery.  True, for many parents PS surgery seems simple, quick and straightforward – once it’s behind them.  From the doctor’s viewpoint this will also be true, as PS is not only the most common but arguably also the easiest surgical condition to fix once it’s diagnosed.

But dismissive talk or writing will do nothing to reassure anxious parents.

“What did I do wrong?”

When a brand new baby becomes dangerously sick and needs surgery, it is almost inevitable that the parents will wonder whether this was caused by something in them (genes or an inclination) or something they did or failed to do or eat.

Several answers to these questions have been reported, but some of these “findings” have also been contradicted.  There can indeed be a genetic factor in PS, even a strong one, but apparently not in the majority of cases.  Gastrin (a stomach acid) production in the mother, perhaps caused by her constitution or by stress, is a strong candidate (though not without challenge).  Breastfeeding and maternal age seem to be in the “perhaps” category.  The studies and discussions continue.

“My baby is not perfect”

More personally, from my knowledge of my mother I am sure that she would have had a deep sense of personal failure and disappointment at her first child, who looked so perfect and beautiful at his birth, was after only 10 days marked by a series of ugly red scars right down the middle of his tiny little belly.  And she could have guessed that if this child was anything like her sensitive and perfectionist self, he would grow up having great difficulty accepting this so-prominent blemish.

I know that my mother and I are not unique in having to struggle to overcome this feeling of ugliness and imperfection.  I just wish that parents liable to suffer this kind of pain would seek and been offered help for themselves and their affected children.

In the past: a stressful recovery time

One of the things I sometimes overheard my mother telling others about was the stress of having to maintain the breastfeeding of her first baby over a distance.

I believe (research and conjecture again) that she had to travel to the hospital every day to deliver expressed milk: this meant a 25 km journey by two steam trains and return.  For whatever reason (usually fear of cross-infection, but possibly also post-War conditions or poverty) mothers in those times were often in this kind of situation.

Remember also that often no physical contact was allowed between the mother and her baby, again because infection killed so many hospitalised infants, especially those weakened by illness.  And finally, remember that in the 1940s babies were usually kept in hospital for about two weeks after surgery.

Is it any wonder that my mother and I were both deeply affected by the circumstances around PS surgery as catalogued here?

I am very grateful that although infant surgery will always be difficult for parents as well as the little patients, there have been huge improvements in many of its facets.

And I’m so thankful that I can recognise that I have been able to work through the lasting effects of my infant surgery through the various stages of my life.  Especially the last decade has seen the formation of networks of similarly affected survivors, breaking through the taboos, silence and loneliness.  The release of volumes of medical reports have shed much technical and historical light on what were for so long regarded as secrets of the medical world.

The Pyloric Stenosis story and my story (2) – some Negatives

In recent months I have researched and briefly chronicled a century of medical articles and reports about infant Pyloric Stenosis and many of its aspects.

The previous post mentioned some of the things I learnt and valued and which have benefitted me as I digested this material.  In this post I must mention some of the things I did not like.

1          No interest in counsel to parents

When new parents have to surrender a tiny recently born baby with pyloric stenosis (“PS”) to a hospital’s operating room team, it is by almost all of the many accounts we can read online the most difficult thing these parents have ever had to do.  No matter how kind the surgeon, reassuring the anesthetist and caring the sister in charge, most parents are traumatised to an extent that makes it unlikely they will be unaffected for life.  To take my mother as an example, she refused to talk about my sickness and although a very caring soul, she could not help me come to terms with my very clear discomfort.  Yet for the rest of her life she played with the word “pylorus” – every time sending a shaft of adrenalin through my system.

I’m quite sure my mum’s and my PS pain were not unique.

However, in all my years of searching and reading medical journals about the world of infant PS I have never ever come across even the briefest mention of this, let alone a recommendation that many parents of PS babies may benefit from some counsel on how to manage this trauma.

The reason I raise this as my first concern is that so many PS survivors who feel troubled enough by their experience to go online with it mention their own parents’ difficulties in helping them.  I consider this subject so significant that I’ll devote at least one post to it as I follow up my review of the years of discovery and improvement in the treatment of PS.

2          Little interest in long term (human & other) effects

Not unconnected with the previous censure, I found that in the available medical literature relatively little attention has been given to the later and often lifelong effects of PS surgery.  Interestingly and probably tellingly, there is a number of articles about the physical effects of PS such as on growth, mental development, or stomach function.  But the possible emotional and psych-somatic effects, although very occasionally listed in passing, are never dealt with or the subject of a research project.

Part of the reason for this and the previous observations may be that far from all PS survivors recognise and report physical and/or emotional difficulties which result or may have resulted from their infant surgery.  And true, this can be a complex matter to diagnose well.

When somebody grows up with self-image, self-confidence and/or PTSD challenges, there will always be at least several possible causes of that.  Who of us can escape the bumps and bruises of life?

I believe that -
(1)  there is no evidence that very serious (that is, life-threatening) personal problems result from the majority of routine infant surgery (like that for PS) for its survivors; and
(2)  there is compelling evidence that in a substantial number of those who have had infant surgery, especially in less recent time, there have been serious ongoing and life-affecting results from a short list of causes.

Again, I plan to write more about this soon (and have done so already).  Check out and watch this blogsite!

3          Disinterest in cosmesis

Not PS surgery - but careless surgeons are not confined to adult work or another country

Also not unconnected with the above, the medical journal articles related to PS have until recently shown scant regard for the cosmetic effect of the surgery.

Only a minority of ex-patients report concern over some of the long-term physical effects of their surgery, but many if not most of the PS people whose thoughts about their experience have gone onto the web have strong and negative feelings about their scar.  The majority of complaints are about their scar’s unnecessarily messy appearance and discomfort or pain caused by their scar.  And it must be recognised that some of the comments and images people have posted online show that a small number of surgeons who operate on babies do some pretty rough work.  In today’s world we have good reason to read: “abusive”.

I do not include in this assessment those whose weight gain has affected their scar J  There is nothing a pediatric surgeon can do to prevent an otherwise tidy job becoming buried in later years by a bulging belly.  As a pediatrican-uncle of mine said long ago:  Ieder pondtje gaat door ‘t mondje” – “Every pound goes through the mouth.”  Good cosmetic surgery can improve this damage.

Reports written in the earlier 20^th century show a clear division between those surgeons who considered how their PS babies might feel about the look of their scar in years to come, and others who were expressively disdainful of considering this with the put-down line, “Be grateful!  I’m doing what I must do to save a life!”

4          Carelessness about alternatives, pain and infection

The last negative comment I make is that although there has been a century of steady improvement in infant surgery and the treatment of PS in particular, my reading has far too often come across signs of negligence with regard to recognised areas of discussion within the medical world.

I mention three very significant examples just briefly.  I have written about each of these in passing and will no doubt do so again, hopefully digging a little more deeply.

(1)  Medical or surgical treatment
Recognising that there are indeed many considerations, I remain troubled by the nature of the “PS treatment by medicine or surgery” issue.  Very briefly:  seeing many articles on each side of the debate have come to plausible and supportive but opposing conclusions, why does the medical world remain so polarised on the choice of treatment?  Why is medical treatment common in some Western and Northern European countries but almost unheard of in (e.g.) the U K and USA?  Am I too cynical when I ask if certain medical interests or traditions are responsible for the disparity?

(2)  Babies can suffer too
Like so many who have spoken and written about this, I am appalled that the medical world allowed infants to be operated on for so long without suitable pain management, accepting the unlikely mantra that “babies don’t feel or remember pain”.  And like so many online, I am angry that infant circumcision is still allowed as a routine procedure in some circles and that all-too-often still without pain management.

(3)  Infection control
It is also shameful that (as often reported in Great Britain and therefore almost certainly elsewhere as well) during the previous century infant surgery was allowed for so long in ways that showed hugely different survival rates.  For many years even after World War 2 PS surgery in British public hospitals came with mortality rates of up to 25% when other UK institutions and other countries reported less than 1% of PS babies dying after their operation.  Reports from the 1920s to 1960s stated that this disparity had two reasons: rich vs poor and careful medical staff vs those who paid little attention to the ever-present possibility of (cross-) infection.  But why was so little done to correct this chasm for so long?

Valid criticism and the need to know

This blog has I believe made some very significant and valid points of strong criticism about how PS in babies has been managed in the 100 years since Prof Dr Conrad Ramstedt discovered how this malady could be “fixed” quickly, safely, and with a much, much greater success rate than was ever possible earlier.  There have been many positives but also some clear negatives.  This is to state the evidence-based obvious, not to congratulate myself.

My aim has been to know and understand better how PS has been dealt with during the past century, to discover how the joys and pain of my story fit into the story of PS and of infant surgery, and to share as much as possible of this journey with those interested.

If you, the reader, would like to continue on this journey of discovery with me and others, and I hope get a bit more involved, do make a Comment, subscribe to this site, and / or contact me by email.  There may even be sufficient interest to discuss some of these matters on a subscribers’ forum.

Pyloric stenosis history and my story

During the past few months I have thoroughly enjoyed learning and writing about and passing on some of the history of treating pyloric stenosis (PS), the condition that 100 years ago used to starve to death the great majority of babies afflicted by it.  Today the deathrate among PS infants in most countries is (or should be) minimal: well under 1%.

What have I learnt and how have I benefitted?

1                    I was heartened by the continuous improvement with new treatment techniques and new drugs.
I have been able to trace and inwardly celebrate these advances.  100 years ago, medical treatment (albeit crude) was strongly preferred to surgery; the surgical techniques were terribly harsh on a weakened infant and rarely successful.  Today the medical treatment avenue has benefitted from better versions of the basically same drugs, it is usually quite responsible and successful, and the medical world should be much more aware of what can and cannot be done by the medical management of PS.
In many developed countries the health industry has become so sophisticated and costly that for mainly cost/benefit reasons, most pediatricians will send almost all recognised PS babies straight to a surgeon; the medical treatment route is simply and sadly even more expensive.
The improvement of the surgical option has often been held back by surgeons being bogged down in their training and habits, but over a century the progress is still very obvious: I have posted a considerable number of scar illustrations to make this clear.
With the ageing and passing of two or three generations, scars from PS and several other kinds of surgery should become far less obvious.

2                    I now understand much of what my traumatised parents did or could not explain to me.
Like I imagine many of us, I could not bear to go through life with a foreign, obvious and ugly scar and not know what caused it.  Even as a child I already wanted to know what physically happened to make such marks on my body.
My parents (like many, I have discovered, and quite understandably so) could never bring themselves to answer my questions, let alone take the initiative in raising the subject.  I also realise that with the advent of the internet, I can answer my childhood and later questions so much better than they could ever have done.
On this blogsite I have appealed to parents of scarred children to talk.  But I also increasingly realise how hard many parents find this.  I plan to devote a blog to this area soon.

3                    I now understand the essence of some of the issues that divided the pediatric and pediatric surgery community over the past century.
Why did so many surgeons refuse to give babies pain relief, let alone local or general anesthesia?
Why did those who recognised that babies are affected by pain divide over whether to use local or general anesthetic?
Why wasn’t I treated with medicine as many were over this century?
When both avenues of treatment (medicine and surgery) were respected, why were some babies treated with medicine and others sent to the surgeon?
Why were (and are) some babies intubated awake while the majority are “put to sleep” before a tube is inserted into their airway, a terribly traumatic experience because it induces the gag reflex in babies even more so than in adults?

4                    I have a much better appreciation of why PS and other life-threatening conditions of infancy are still so partially (and actually poorly) understood.
Despite having been recognised for around 300 years, many studies, and “modern medicine” being (arguably) a century or so old, the causes of PS are still only partially understood and the object of much debate and even argument.
Researching this subject has given me a deeper understanding of the complexity of the causes of PS and the sheer vastness of medical knowledge that needs to be assimilated.

5                    I realise that physical and emotional trauma and scarring from PS treatment have been much reduced.
Despite the fact that many areas of ignorance, uncertainty and debate remain, the improvements that have occurred to date are (I am grateful to say) obviously reducing both physical and emotional trauma and scarring.  This area is of the greatest interest and concern among people like me whose lives have been long and deeply affected by our infant surgery.

Next time: some of the negative thoughts I had as I worked on the medical journal material on PS.