Tag Archives: long term effects

Brain damage after Infant Pyloric Stenosis

Patient & doctor03“If my baby has had pyloric stenosis (“PS”) and had surgery to remedy it, will there be any longer term after-effects?”

Most medical professionals will brush this parent concern away: “No, once your baby recovers, you and your little one can put this episode completely behind you!”

If only this were true…

We must all understand this:

Surgeons’ competence and interest are in the immediate surgical “fix”, paediatricians may follow the infant’s story for a few months, but very little has been done to follow these “Py-children’s” stories over 10, 20 or more years.

However, the very few studies that have been done have identified several possible hazards. This blogsite has dealt with most of the most significant ones:

  • continuing gastro-intestinal (“GI”) instability presenting as GERD or reflux, as IBS, or as a tendency to vomit (in over 50% of PS survivors as one study found) – all due to the high gastric acidity levels which helped trigger the PS in infancy and remains high lifelong in many or even most PS survivors;
  • in a substantial minority (estimated 5-15%) of cases adhesions develop as a result of the PS surgery and will cause pain and distress to a significant extent;
  • a minority of PS survivors take many years to come to terms psychologically and emotionally with their surgical scar – acknowledged as a lifesaver but growing more obvious with the years, in which they had no say, and which some parents decline to talk about;
  • a very small number of older PS survivors have gone public about struggling with symptoms of PTSD diagnosed as resulting from the rigours of older style infant surgery, when many surgeons believed there was no need for anesthesia (“babies don’t have a memory”) and when long maternal separation was part of many hospital routines.
  • There is at least one other area of possibly long-term damage that can come with PS and infant surgery.  This is damage to the brain from starvation resulting from delayed diagnosis of PS, and/or repeated anesthesia, especially when the PS came with another hazardous condition of infancy.

This is the subject of this post.

Here follow some of the facts that have been established by medical research and reporting. I have included a link for every point noted but have collected many more reports. Readers are free to ask for my full reference list; contact me by email via the “About me” or “About this blog” tabs at the top of the page.

Fact 1:  Single use anesthesia probably causes no long-term damage

 A 2016 report clearly established that single and simple surgery for hernia repair resulted in no brain damage at 36 and 48 months.  This report has been widely quoted to reassure worried parents.  Lengthy or repeated anesthesia for more complex procedures was found to be damaging.

The anesthesia used in the typical pyloromyotomy (to stop PS) is part of one fairly quick and simple surgical procedure.  However, almost all PS surgery occurs in the first weeks of an infant’s life.  I have not found any study of the effect of a single short anesthetic episode on the brain of a very young infant.

So repeated surgery using general anaesthetic certainly does affect the infant brain.  Prevailing opinion is that single use does not affect a baby, but the studies “establishing” this did not involve newborns but children at 3 and 4 years old!  In matters of life and death general anaesthesia is a known and acceptable hazard.  But contrary to the prevailing opinion of the medical work, most PS babies can quite easily be treated with medication. And it is in many countries. More targeted studies are needed.

Fact 2:  PS-related malnutrition does have long-term consequences

 

A baby’s PS episode can easily result in significant starvation, as prompt and accurate diagnosis is sometimes difficult and sometimes suffers from negligence, lack of the required skills or unnecessary delay.  A baby is developing rapidly and is wired to need regular feeding: this is especially true of the human brain.

Starvation and resulting malnourishment are very real hazards with PS, and several studies including an Australian one published in 2018 have shown that PS infants and children have significantly higher levels of brain damage than control groups.  The cognitive (thinking, reasoning, remembering, imagining, or learning words), receptive language (the ability to understand information), and motor skills (the precise control of muscles in order to perform a specific act, whether in the classroom, in sports, or personal clumsiness) scores are most clearly affected.

I cannot but link these findings with the observation that several of my skills in these areas are clearly below those of my four siblings. This is not to deny that a PS survivor can never be a top athlete, accountant or academic – all I observe here can be questioned… but my lifelong observations remain!

A 1973 Scandinavian study found links between PS-caused starvation and below normal social and communication skills and described them as pervasive developmental disorders (PDD). It found that parents could recognise the symptoms before the age of 3 years.

But it added that if recognised early and given special remedial support, children with these difficulties will usually overcome the worst of their handicaps.

Fact 3:  There is a possible link between infant PS and Autism Spectrum Disorders (ASD).

A large 2009 study conducted in Western Australia over 15 years found that PS babies did not have a higher incidence of ASD than a control group, whereas babies with many other birth defects did.  But it mentioned that several other studies had found that infant PS also occurred significantly more often in children who were also diagnosed with ASD.

autism01Another large study was reported in 2009: the Autism Spectrum Disorders Report, which is also readily available online.  Like the WA Report, it found links between ASD and many categories of birth disorders, but not with PS.

As with the effects of anesthesia on the fast developing brain, the medical world is not agreed on this subject.  This clearly is one of the areas in which more research (read: more funds) is needed – but of course there are many even more serious conditions that are crying out for more interest and funds for research. It has not been established that there is a common cause of IHPS and ASD (such as a higher incidence of defective genes and/or environmental factors in these children) or that one condition actually triggers the other.

Conclusion:  Greater awareness and more studies are very much needed

My reading list on this subject area reflects a telling lack of clarity and agreement, and this is far from the only subject area of infant PS on which studies have arrived at conflicting and sometimes troubling conclusions.

In 2013, the Journal of Neonatal Surgery published a widely disseminated overview article marking the centenary of German doctor Conrad Ramstedt’s publication of his discovery of and success with the PS surgical technique that quickly became and has remained the standard way of dealing with infant PS.  Dr Raveenthiran Venkatachalam’s remark (as “Athena”) on the subject of this post is worth including here:

Dramatic relief of symptoms following pyloromyotomy has lured many pediatric surgeons to declare a cure after one or two follow-up visits. Long term results are generally presumed to be good rather than proved by evidences. Two recent papers question this com-mon assumption. Using Baylay scales, Walker et al [21] assessed neurological development of 52 infants with HPS and 211 healthy infants at 1 year of age. Cognitive, receptive language and motor scores were significantly lower in HPS infants than in controls. It is unclear whether this adverse outcome is attributable to the dis-ease process or to anesthesia administered during surgery. Although further studies are needed to conclude whether this difference is of any practical significance, the findings of this study are certainly a source of concern. Saps and Bonilla [22], in a case-control study, studied 100 HPS patients and 91 controls in their late childhood. The mean follow-up period was 7.2 years. Nearly 25% of those who underwent pyloromyotomy in infancy developed chronic abdominal pain at a later age; while only 6% of the controls were so. Irritable bowel syndrome, functional dyspepsia and functional abdominal pain were more common in HPS group than in control group. Athena considers these two studies as eye-openers necessitating long-term follow-up of HPS infants.

What most doctors seem to remember about IHPS from their med school classes and textbooks is necessarily basic and general.  If more is said, it’ll be even more easily forgotten.  Medical science is such a huge body of information.  Although PS is quite common, most medical professionals will see very few if any cases.

We can be thankful that in general PS and much infant surgery today have no major ongoing consequences. If there were any life-threatening conditions or obvious disabilities, the medical world would know about this and PS parents would not be silent.

One of the most traumatic events new parents can experience is finding their baby vomitting uncontrollably, forcing them to submit their newborn to life-saving surgery.  We can be thankful that almost all babies and their parents nowadays survive pyloric stenosis (“PS”).

Once that crisis is behind them parents’ next question is inevitably: will this condition or surgery affect our child’s future?  Reliable and informative answers to this question remain challenging and usually unreliable – but few doctors, parents, and survivors seem to be aware of this.

Because of this blogs like this one and social media discussions will continue to advocate for far greater awareness of the facts.

See also my post: Is a sick and starving baby affected for life?

Can Pyloric Stenosis come with long-term effects?

Ask your General Practice doctor or a pediatric surgeon about the long-term effects of infant pyloric stenosis (“PS”) and you will almost certainly be told there are none.

However, the volume of questions, complaints, and feedback to online social forum sites such as BabyCenter/Centre, Facebook, MedHelp, Patient, and Topix is a clear sign that the answer to this question is not quite as clear and simple!

The issue of possible long-term gastro-intestinal (“GI”) and other complaints after PS is in fact a complex subject.  The social forum interest mentioned above shows that there is a short list of long-term effects that those affected suspect may not be unrelated to having had infant PS and/or the surgery to remedy it.

However, many of these complaints are hard for medical science to study and possibly recognise, and therefore for your doctor to treat.  So unfortunately for us, many busy doctors will brush off patients’ attempt at consultation about them as a waste of their time; others will recognise the problem but can usually offer little more than sympathy!

Besides this, GI problems in general (apart from PS) are the most common complaint we take to the doctor, so unravelling their cause and getting effective treatment is a painstaking business! In fact, a small but significant percentage of GI complaints have no verifiable cause at all – and even have a name: “Functional Abdominal Pain Syndrome”.

So… what is beyond doubt?

All surgery (even today) comes with short and long-term hazards, which are acceptable if a life is at stake.  These hazards have been minimised and some virtually eliminated in recent decades – but several remain.  The list of possible immediate and short-term hazards includes anesthetic complications, an unsuccessful procedure (so repeat surgery), wound disruption, and infection.

Those that can arise in the long(er) term include surgical adhesions, collateral damage (usually to the duodenum, stomach or vagus nerve), and emotional issues ranging from scar shame and emetophobia to pre-verbal trauma or mild PTSD.

If the baby has been significantly starved for any reason (usually poor and delayed diagnosis) there may be lifelong effects on several areas of brain function.  Emotional damage can also result from (as happened quite often in the past) the baby’s surgery being done with inadequate pain control, accompanied by significant maternal separation, or by the parents’ trauma resulting from the PS and surgery in any way being conveyed to the infant or to the growing child.

Then there is a short list of GI issues, which are common (also) among people without PS and PS surgery in their early history.  However, these problems seem to be experienced more often by survivors, and are acknowledged as possibly linked by some medical professionals and by several (mostly small) studies.  The theory that high gastrin levels (a blood hormone that controls gastric acid release in the stomach) causes PS in babies is one of the most obvious and plausible among the causes / etiology of IHPS, and this theory links strongly to GI problems in later life. It would also explain why GI problems can arise directly from the subject’s history of PS (the condition), and not the surgery.

The list of long-term GI complaints common among PS survivors includes reflux (or GERD or heartburn), several other GI development faults of infancy, high acidity causing IBS, and sometimes gastric dumping, ulcers and cancer.

There have been more than a few small studies reporting all this, and a few social forum reports of medical professionals who recognise the linkage from their own research and experience.

It may come as a surprise that so little is known (or recognised) about the possible long-term medical issues after PS.  It is because PS is so easily and usually successfully dealt with, and I suspect because the long-term problems are not life-threatening, that there have been no large studies of this subject area.  Besides, there are many more pressing medical challenges that need research time and funds.

The only large study that has stood out showed that the risk of PS is very much raised by mother or newborn using any of the macrolide family of antibiotics – which also relates to gastrin levels!

Despite all this, there has been at least one recent attempt to set up a sizable and robust study of the subject – which the PS community awaits with great interest!

In the meantime it must be realised that the medical community continues to submit to the surgeons’ love affair with PS and repeat the med school mantra that there are no long-term issues to keep in mind in relation to PS.

You can find all the above information on the web. If you need or want my evidence of the above, you’re invited to message me with your email address. I have a list of some 1700 reports and other material which can be accessed via the web.

Is there a link between infant PS and later abdominal trouble?

Most General Practitioners (GPs) will reject any link out of hand.  Some GPs have even been known to ask their patient (or client) what “PS” (pyloric stenosis) is.

We can be sure that every medical textbook and training includes at least a page or part of a lecture on PS, which is the most common reason for non-elective surgery on infants in their first months and years.  But who can blame a medical student for not remembering everything they are told and read over six or more packed years?

However, the almost universal denial of a link between PS and later abdominal trouble is more than a nuisance.  It may be “textbook” but it misleads and misinforms the parents of a PS baby and most will continue with this false assurance until they discover the truth – usually only after much frustration.  As for PS survivors, they are the immediate and personal subjects of the widespread ignorance and misinformation about the possible long-term gastric and other problems that can come with PS and/or its surgery.

113This kind of trouble does not seem to afflict the majority of PS survivors, and may only affect a small minority.  But considering PS affects between 2 and 5 in every 1,000 babies, that is still a lot of people!  I have on file hundreds of stories just from those who have told something of their story on Facebook’s several PS Group pages – and elsewhere!  There are several other social forum sites carrying the stories of worried or unhappy PSers.

The pattern is typically like this:

  • The “survivors” endure some years of increasingly nagging (though not mortal) discomfort, pain and frustration with real but unidentified gastric and/or other abdominal symptoms (tightness, pain, bloating, irritable bowels, dietary misbehaviour, vomiting, etc.
  • Their doctors seem loathe to acknowledge these symptoms, giving their patients medication or dietary advice.
  • There is outright rejection of PS possibly having long-term consequences – the high acidity of PS, damage to the gastric passage and even the lungs (from ingested vomit), post-surgical adhesions, and trauma after old-style infant surgery and hospitalization are just some of the hazards which should be considered.  All of these possible conditions have been documented and reported in medical literature.
  • It seems that often the “survivor” discovers the link between their malady and their PS past only when they stumble onto an online forum where they find they are not alone.

Sadly, because PS-related problems are low on the medical world’s radar for several reasons, there is virtually no interest in researching them.  Hence the medical juggernaut rolls on in rejection and ignorance.  However, there have been a few small studies and (from what I have found) just one very large study that have confirmed that infant PS is not always free of long-term consequences.

If the reader is interested to trawl through enough pages of stories on this blog and on the screens of the largest three of Facebook’s PS Groups, they will also find reports that several GI specialists have (usually after many, many consultations) admitted to a connection, agreed on tests, and arrived at better advice treatment.

In 2014 a pediatric surgeon friend and I published a small book, in which he explained what many still regard as the elusive cause of PS and I outlined my personal experience of this condition.

Pain01Lay reading of medical journals and even a basic understanding of how our gut and PS work tell us there certainly can be a link.  More specifically, the high acid that causes PS continues with the patient, raising the risk of related issues including reflux, irritable bowels, esophageal damage, and gastric ulcers and cancer.  Reduced gastric emptying could well be caused by damage to the vagus nerve or adhesions from the operation constricting the working of the stomach and gall bladder, whilst the throat / voice problems are likely caused by erosion / scarring of the esophagus caused by reflux, high acid, or lack of care with the breathing tube during surgery.

Of course anyone with any such symptoms would need a proper diagnosis but it’s not hard for even lay people to understand the links.  With countless numbers from my Facebook networks, I plead with the medical profession, parents, patients and the family and friends of PS survivors to recognise and help spread the awareness of this quite common condition and its possible ramifications.

And if what you the reader has learnt here “rings a bell” … I sincerely hope that you have been greatly encouraged to pursue your problem and get it sorted out.

Dealing with scar shame

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Pyloric stenosis in its adult forms (1)

Back in the 1950s I once overheard my parents talking about my oldest (and long deceased) uncle Fred having a stomach ulcer and an operation to deal with this.  I well remember being transfixed and “all ears”, but having been stonewalled so often, I dared not ask my parents the question on my mind.  At this time I would have been about 10 years old, and I had worked out that my prominent and hated belly scar was from an operation I’d had as a baby as I’d developed a blocked stomach (pyloric stenosis, “PS”).  I was keen to know whether my uncle Fred would be sporting a scar just like his young namesake.

When I got to see my uncle in swim-mode some 20 years later I was disappointed: his scar was small and almost invisible, far less disfiguring than mine.  Compared with infant surgery in the 1940s, abdominal surgery on adults and 20 years later was quite tidy.

Gastric ulcer01What I’ve discovered only recently is that infant PS and adult gastric ulcers and PS are often related.  All three conditions and several others have been linked with a high output of gastric acid and this is often a family trait.  So my connection with my namesake uncle (and hero) likely went further than our family realised!

The previous post sets out some of the important similarities and differences between the infant and adult forms of PS.  This post will outline two medical articles on adult PS.

The first report was published in 2010 and deals with the case of a 71 year old male who was diagnosed with PS.  The interested reader is encouraged to use the link to read the full article which has been kindly made available to the public.

In brief, it notes that adult PS is found in two forms.  It is often caused by other conditions: a long history of a mild form of the early version, an earlier stomach problem such as a gastric ulcer, or cancer.  Sometimes, as in this case, no underlying disease was found.  This 71 year old was unaware of any such factors, yet tests and surgery proved this man did indeed have a PS.  His symptoms of “abdominal distension, nausea, and vomiting” had been noticed for (just) 3 months.

It is noted that both forms of PS occur far more often in males than in females, and that they often recur in certain families.

The aim of this report is to be applauded: to raise the awareness of both forms of PS within the medical community, and especially the various ways it can appear in adults.

For those like myself and (I expect) most of our readers, the article’s value is also in its acknowledgement that the infant and adult forms of PS are related, and that the infant form does not necessarily end with a simple surgery.  Far from it, as many of us have well come to know!

The second report can thankfully also be read in full by those interested in more detail.  It outlines the very large decline in the number of adult PS sufferers needing surgery.  I have already posted about this.

downward_graph_smallThis study was undertaken by a York (UK) body gathering data on peptic ulcer disease, and based on the statistics from the 3 kinds of stomach surgery done on 4,178 adults and how often adult PS was found during these procedures.  The study ran from 1929 to 1997 and included people born between 1889 and 1959.  It found that the age at surgery fell during these years, that PS was found in 17% of the earliest patients, and just 3% in the last group, and that gastric surgery rates fell markedly (although not uniformly) during the almost 70 years under the lens.

These results show very clearly the effectiveness of modern medical treatment for stomach conditions and introduced in 1977; this includes acid-suppressing medication which reduces the formation of gastric ulcers and resultant scarring of the stomach wall and pylorus.  However, the reduction of PS numbers was even greater than the falling numbers of stomach surgery, suggesting that a number of factors are at work, including diet, medication, and the management of upper bowel disease.

Once again, the great majority of readers will be less interested in the medical messages of the report than in what it might mean for interested lay people.  What do these figures mean for you and me whose history includes PS?

  • yay1People who have had infant PS are less likely to have serious long-term effects than they might have expected some 40 years ago or earlier, thanks to better diet options and medication.
    The fact that today we can read much more about the long-term problems experienced after infant PS is a reflection of our access to the media, not of rising numbers.
  • People who have had infant PS are ever less likely to need further surgery for ongoing problems including a renewed stomach blockage. We need to be aware that for some of us these problems are significant, testing, and often interminable.
    The report states what many have found (as I have read), that surgical responses to such problems are not only severe but also likely to be ineffective in the longer term.
  • Peptic ulcer disease continues today but it now very rarely results in PS.

So – generally good news for the PS-aware community!  My next post will review several other medical articles on adult PS.

Pyloric stenosis: its infant and adult forms

This blogsite has mentioned several times that pyloric stenosis (“PS”) afflicts adults as well as infants.

Pain01Recently I devoted a post to the adult form, passing on the stories of several people who had related these on one of the Facebook PS Groups’ pages.  By using the “Categories” box at the top right of this site, interested readers can locate several posts that deal with adult PS.

The stories of adult PSers vary even more than those about the infant form of the condition.  However, the basic cause is the same: high gastric acidity.

In the infant disease, the high gastric acid level over-stimulates the pylorus (the circular muscle valve at the stomach’s exit, causing it to thicken, toughen and choke the muscle’s ability to relax and pass food. Peptic ulcer3

Adult PS is also caused by high acidity and often a virus, Helicobacter pylori. The acid erodes the stomach lining and creates conditions which enable the virus to trigger the eruption of gastric ulcers, which then scar the stomach and pylorus, ultimately narrowing and blocking the stomach outlet.  These ulcers can also give rise to cancer.

These differences do not affect the name of the condition: “pyloric stenosis” means “narrowing” of the pylorus (which means “gate”).  The term “hypertrophic” means “enlargement” and is only used of the infant form.  The effect of PS is also the same: the blockage of the narrow exit valve, starvation and vomiting.

The difference in the development of the two forms of PS explains why the relatively simple “fixes” for infant PS (medication or surgery to relax the pyloric ring) do not relieve the adult form of the condition.  The PS baby’s problem is the thickening of the pyloric passage’s muscular outer, whereas the adult’s blockage occurs inside the pylorus or at the antrum, the tapered part of the stomach closest to the pylorus.

Scared_DoctorThe main post mentioned above reflects the range of symptoms that adult PSers may suffer and the various treatments which are offered by GI specialists: unhappily adult PS is more complex in its causes, symptoms and available treatment.  All treatment options are far from assured of success and they tend to have unwanted and significant physical side-effects, far more often so than the great majority of infant PS survivors report.

Infant PSers have a much higher risk of a list of abdominal complaints after their early surgery and in later life.  One of the risks is of developing gastric ulcers – and the other form of PS.  Deja-vu!

But today, thanks to effective antibiotic treatment, H. pylori infection is usually quite easily dealt with, and so gastric ulcers are now much less common than they were in my younger years.

The next post will continue the stories of adults with PS.

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.