Past Pylorix Pages – Pyloric Stenosis treatment since 2000

What a difference a century makes!  100 years ago most babies with a medical problem such as pyloric stenosis died, as did many other little ones.  Infections, disease, illnesses, poverty, accidents and tragedies claimed huge numbers of lives.  Lack of effective birth control is not the only reason why so many people had (and in some countries still have) lots of babies.

Prof Dr Conrad Ramstedt operating - so different from 100 years later!

A century ago this year a German Doctor, Conrad Ramstedt, published a report on his accidental discovery of what has been labelled since “the Ramstedt pyloromyotomy”, which revolutionised the treatment of infant pyloric stenosis (PS).  Before 1912, medical treatment (with a drug) was the preferred treatment for PS, even though more or less than half the babies so treated died of starvation or dehydration anyway.  The several surgical remedies then available were so severe and crude that they were regarded as a last resort.  Read: “accompanied by an even higher risk of death – but you just might be lucky”.

In the previous post I included one of several photos published by a German university, showing the huge cosmetic improvement of PS surgery.  In the two previous posts I mentioned and illustrated the two surgical techniques which were introduced some 20 years ago to give PS babies a future with minimal scarring from their life-saving operation: peri-umbilical and laparoscopic surgery.

Many of the medical journal articles of the past 10-20 years that deal with PS have dealt with one of two subjects: the pros and cons of umbilical and laparoscopic pyloromyotomy, and the advances of anesthetic drugs and technique.

Both peri-umbilical (“through the umbilicus”) and laparoscopic surgery are skills that require patient learning, special equipment and extra careful use.  It is clear from the literature that whilst many small town general surgeons would perform the occasional PS operation on a baby (though all-too-often rather crudely), the new techniques required a specialist team and a well-equipped and funded hospital.  No wonder so many pyloromyotomies today continue to be done “the old way”: the material on the web indicates that all the old incision favourites may still be found today, together with surgeons who still sew through a baby’s skin rather than burying their craft inside the wound or using adhesive glue or tape.  Some of these little ones will grow up with a more disfiguring scar than mine from long-ago 1945!

However, in many countries the great majority of infant surgery is competently done from a technical point of view, and more often than not uses one of the two new and preferable techniques.

Laparoscopic surgery uses several instruments inserted through 2-5mm stab wounds

One 2004 article reported on a review of 8 medical articles comparing a total of 355 open (long incision) and 240 laparoscopic pyloromyotomies.  It concluded that open surgery, apart from being more available results in slightly fewer complications from collateral damage, and thus had a greater immediate success rate – although the report remarked that this difference might only be due to a learning curve.  Where available, the laparoscopic technique is comparable in terms of operating time, and better in terms of post-operative recovery time and hospital stay whilst giving a clear cosmetic benefit to the patient (and parents).

Another study comparing open and laparoscopic pyloromyotomy generally supported the previous report, and also found that the minimal access (laparoscopic) method results in the less pain and post-operative vomiting.  Articles on the umbilical route reported that while potentially being the least scarring and having fairly similar benefits to the laparoscopic technique, it does run a higher risk of infection unless the site is very thoroughly cleansed and antibiotic treatment is given before the surgery.

Pediatric anesthesia is another subject that has attracted considerable attention during the past decade, and understandably for me, I was particularly interested in what I learnt about anesthetic technique for pyloromyotomy.  Reading several of these articles has made me aware of the enormous complexity of this field: I am grateful that I could understand more than enough to benefit greatly from what I read, but I must also say that the material is too extensive and technically challenging for me to be able to pass much of it on.  However, some general observations will be valuable.

• The effects of PS on a tiny baby affect many parts of its fragile little body, and anesthetic drugs have their own powerful effects: these two must be very well understood and then carefully matched and monitored during surgery.
• When I was operated on in 1945, some surgeons used ether, others local anesthetic around the incision, and some (from what I have been able to find, a fairly substantial minority) used alcohol and/or sugar to pacify the baby, or nothing at all, perhaps or of necessity together with a paralysing drug.  As ether has so many side effects, I can understand why so many of the contemporary report writers (and I suspect my surgeon) used local anesthetic – and probably paralysed and sedated their little patient.  (With what effects we have found out since.)
• Ether, so common, useful (and feared) in almost all surgery since the mid-1800s, was phased out in most “developed” countries in the 1980s.
• Today, local anesthesia is still used occasionally, for minor surgery, when other medical conditions make unconsciousness too hazardous, or when the parents refuse general anesthetic use.
• Despite critical information and policies laid down in the 1980s, there still seem to be surgeons today who don’t use pain relief for infant surgery.  However, it is being increasingly recognised that pain does affect even newborn infants, and pediatric anesthesia is now an established field in medical knowledge and practice.
• There is an ongoing debate about the preferred way to intubate a baby (inserting a tube into a baby’s throat to deliver gases and prevent the breathing in of vomit and mucous).  There seem to be arguments for doing this before general anesthesia is induced (with inevitable trauma to the baby) rather than after.  It seems that most anesthetists today will intubate a baby after it has first been put to sleep with an intravenous sedative and its throat has been relaxed.
• A long inventory of anesthetic drugs is available today; each has its uses, benefits and drawbacks, and a PS surgery will normally involve the use and/or mixtures of several of these, as well as pain relieving drugs for the post-operative hours and days.
• Pediatric anesthesia only started to become a recognised specialty about 1940, just a few years before my surgery.  Today the pediatric anesthetist is certainly a vital and skilled member of the PS surgery team.  We have come a long way.

Past Pylorix Pages – Pyloric Stenosis treatment in the 1990s (2): Lap PS surgery

In my previous post I wrote about the introduction during the early 1990s of umbilical pyloromyotomy, the surgical treatment of infant pyloric stenosis (PS) in a way that results in minimal scarring.  Growing up and venturing into the adult world with an obvious but mystery scar has been a significant hurdle for many PS survivors.

I know this from personal experience.  Many of us who escaped a very early death would be even more grateful for the gift of our life if early surgery had not left us with challenges including sometimes PTSD, a prominent scar and / or parents from a past age which expected children to be seen but not heard, even if it concerned their troubling personal questions.

A second new treatment option was introduced for PS babies in the 1990’s.  Minimal access (MAS) or laparoscopic surgery became available from 1991 for a growing if short list of infant “procedures”.  Medical journal articles trace the growing refinement and availability of MAS for PS through the 1990s and the decade since.

Typical stab wounds from minimal access surgery to treat pyloric stenosis

At first MAS for PS came with frequent complications (or “a high morbidity rate” to use medical jargon).  The frequency of mistakes and after-effects associated with PS surgery had been steadily reduced during the 20^th century, but now increased again as surgeons had to work without direct sight of their “target area”.

• Perforation of the mucosa (the inner lining of the pylorus) or the duodenum is the result of a too deep or lengthy cutting of the pyloric muscle: it is life threatening if not immediately recognised and repaired.
• Incomplete pyloromyotomy results from insufficient splitting of the swollen pylorus and does not become clear until it is found that the baby continues to vomit several days after its operation.
• Bleeding is not normally a hazard in pyloromyotomy, but when it occurs it also must be managed promptly.
• Infection of the umbilicus can occur from both umbilical and MAS pyloromyotomy because of the difficulty of sterilising the folds inside the umbilical stump.

It was found that pediatric surgeons needed some 25 operations to become MAS-pyloromyotomy-skilled, and that this surgery should therefore only be considered in hospitals with sufficiently skilled teams of surgeons and anesthetists.

Which new surgical technique is to be preferred?

27 years of progress: a German father and son after PS surgery - the son by the umbilicus

During my years of work on this subject it has become clear to me that if one of my grandchildren had needed PS surgery (which I am grateful has not occurred) I would advise that provided there was a choice and that provided the operation could be done by a skilled and careful surgeon, the parents choose surgery via the umbilicus rather than MAS.

The scar from a carefully done umbilical pyloromyotomy can be almost invisible, as the photos with the previous post make clear.

However, MAS pyloromyotomy is normally done through three small stab wounds of about 3 cm each and including one through the umbilicus.  These wounds often heal very well and become almost invisible after a year or so, much to the relief of the anxious parents.  But the scars will grow with the child, eventually tripling in size and usually becoming quite indented.  I have noticed that these PSers even before teenage look seem to have three belly buttons, not something I would have found easier to deal with than the centipede scar on my belly!  The development of these obvious pits is impossible to avoid although good plastic surgery in later life could release them from the underlying tissue and reduce the indentation.

The development of anesthesia continued during the 1990s and many reports and other articles help tell this story.  The use of the various forms of ether had died out in most operating rooms due to its undesirable effects.  The trauma that resulted from the giving of ether and other early anesthetics disappeared as quick acting sedative drugs like sodium pentothal came to be injected prior to the induction of deep anesthesia.  Paralysing drugs and endo-tracheal tubing to support breathing and avoid the inhalation of vomit and secretions were now only introduced after the patient was unconscious.

Lay persons like me will be utterly horrified that during the 1990s some pediatric anesthetists and surgeons continued to insist on the claimed benefits of intubating the patient while awake, and/or to maintain that infants are not affected by lack of general or local pain control and by being paralysed during awake surgery.  Whilst I can understand that every choice of technique will more than likely have both drawbacks and benefits, the fact that these issues continued to be debated during the 1990s tells me something about human nature and some of the problems of the medical profession.

Finally what I find a somewhat sad note.  A 1991 letter by two British paediatricians tells us that Eumydrin, a muscle relaxing drug long used to treat most mild PS cases with medicine rather than the knife, was taken off the market in 1987.  These men also commented that this move was not unconnected with a growing lack of training and experience among doctors in the non-surgical treatment of PS.  This meant that surgery for PS was becoming the only available treatment for PS, at least in the English-speaking world.

Past Pylorix Pages – Pyloric Stenosis treatment in the 1990s (1) – minimizing the scar

The obvious scar from pyloric stenosis (PS) surgery when I was just 10 days old caused me much grief from the age of 6 and for many of the years of my growing up after that.  It has also become clear to me in recent years that many symptoms of PTSD came with the old surgery and its effects on me and my parents.  I have been working through the PTSD issues as best I can.  As for the scar front and centre on my body, I believe most of us with a scar we find embarrassing eventually come to accept and even feel proud of it, although for me this was a long time coming!

Reassuringly, with the advent of the internet, I discovered that I was far from unusual in wanting to hide my belly scar, hating people’s looks and questions, and feeling “different”.  Nor was I alone in having PTSD after infant surgery, and in seeking to manage it.

Like this young man I struck a very defensive pose whenever I felt "exposed"

While some young people could be light-hearted about their scar, even telling unlikely and imaginative stories about how they got it, many wrote that they hated it with a passion and that they or their parents had looked into the possibility of scar revision surgery.  However, some also mentioned a degree of ambivalence: they were able to recognise their ugly scar as “the” mark of their survival and thus an essential part of their life story.

Infant surgery over the years has often triggered PTSD, but that’s a subject I’ve written about earlier on this site.  It seems clear to me that if my scar had not been as large and obvious, my parents’ part in causing my PTSD would have been negligible or non-existent.

How can the scarring from infant surgery be reduced?  The first move towards this emerged just before the 1990s.

On the web, there are several statements of what surgeons might or should regard as their chief considerations when they cut and sew a patient’s body, and I found it sad but also understandable (considering the “scientific” and “dispassionate” way too many medical people are wired up!) that only some of these surgeons included in their short list the emotions of the patient about the scar that would result from their labours.

I am grateful that minimising scarring became a real consideration in pyloric stenosis and other kinds of surgery during the 1990s.  In 1986 Drs K C Tan and A Bianchi of the Royal Manchester Children’s Hospital published their technique to remedy PS through an incision made in or around the umbilicus which upon healing would become quite or almost invisible.  They reported:

Forty infants with infantile hypertrophic pyloric stenosis had a Ramstedt pyloromyotomy through a circumumbilical incision.  Delivery of the pylorus was relatively easy.  Mild wound infection occurred in three infants and a further child developed a purulent discharge.  There was one instance of abdominal wall dehiscence and all the resultant scars were hardly visible, thus achieving an apparently unscarred abdomen.

Ever since then, the merits and hazards of the Tan-Bianchi pyloromyotomy have been debated in infant surgery circles, and several cautions and modifications have been published.

Follow-up surveys made it very clear that parents of PS infants approved of the cosmetic improvement, and in one survey medical doctors overwhelmingly stated they would choose a Tan-Bianchi pyloromytomy for their baby if necessary.

However, there are two main difficulties with the Tan-Bianchi technique.  First, the pylorus is located quite a way north of the umbilicus, and bridging this distance through a small incision can easily result in damage to particularly the incision area and/or the stomach.  The second hazard is caused by the umbilicus hardly being a tidy and clean area from which to open the abdomen, and so this technique has come with a marked increase in abdominal and wound infections.

The first problem has been addressed by minimally extending the incision at the umbilical site in any of several ways, some of which do not cancel the cosmetic intent.  The infection hazard is best reduced by very careful disinfection before making the wound.

A very tidy umbilical pyloromyotomy scar after 7 years

A 2008 survey of Italian patients and parents the previous 16 years found a 100% satisfaction rate with the Tan-Bianchi pyloromyotomy technique; 90% of a panel of assessors ranked the scars as excellent or good.

The Tan-Bianchi pyloromyotomy technique and modifications of it are widely used today, and together with laparoscopic (minimal invasive surgery) are respected, effective and favoured when compared with “open” surgery which is still acceptable in far too many practices and hospitals.

As I grew up I came across a few people who had survived PS which was treated medically without surgery.  I felt so jealous of them, but since then I have learnt that in my case, medical treatment would probably have resulted in my death from the condition.

If I could not have escaped the operation and if a less disfiguring and stressing option had been available in 1945, who would not be 100% sure that my parents and I would have accepted it regardless of various hazards and degrees of difficulty?  And this would have reduced the trauma also.

Roll on, less disfiguring and minimally invasive surgery!

Past Pylorix Pages – Pyloric Stenosis treatment in the 1980s (2)

My parents chose not to deal with my questions about the pyloric stenosis surgery scar on my belly when I was a child.  I believe they were too traumatised, but they passed it on to me.  Their silence affected my relationship with them so that I never raised the subject with them again in my adult years.  How sad and how foolish of me, I think now.

By adulthood I was well on the way to self-educating myself about pyloric stenosis, anesthesia, surgery, and other medical matters, although (as expected) this happened from a childish start.  At first I really thought that –

• the fine but slightly raised incision scar was a piece of string caught under my skin – and I tried several times to dig it out like I would a splinter;
• the hollow dimple left by a drain near the top of this scar was a brown birthmark;
• the pockmarks left by the stitches and other OR gear that got me through – these just mystified me.
• And I experimented (and self-injured) to try to learn more about this mysterious part of my body.

My punch line here? Parents of infancy-scarred children, please manage any trauma memories you have after your baby’s sickness, shelve adult humour, stop procrastination and whatever else may hinder you from answering your child’s deeply felt questions openly and sensitively.

Sure, I would never have imagined at age 6 that the strange white pattern on my belly was from having been sliced open once upon an early time because my internals needed adjusting, and that I’d then been sewn up like a baby-football.  But it would have been better to learn this from my loving and also-wounded parents than by working it out for myself.  So share the painful story, but also your great relief and lasting gratitude because your dying child became a survivor.  And: invite your child to come back to you again and again with more questions.

When I read other pyloric stenosis (“PS”) survivors’ accounts of how they managed becoming aware of their infant surgery it always strikes me how different we all are.  Some children seemed to need little or no help; other kids were helped very well: they were told simply and factually what had happened, how it had been life-saving, and how fearful and then thankful their parents had been.  But too many like me were met with silence or evasion.  Some were traumatised by adult humour in the form of fanciful and often cruel stories.  Some (by their own accounts) gave their scar no attention and wondered in later life what caused it.  Others again were given very misleading information by parents who didn’t seem to have the ability to understand and explain what really happened.

As I’ve written in another post, I needed to know – even obsessively so.  I love puzzles and I’m still learning and fascinated by the bits and pieces that come together as parts of my Surviving Infant Surgery story.  Let me mention here what has particularly struck me in the 1980s journal articles I’ve collected: information that has helped me to understand and embrace the quite tidy but long-hated scar from my 1945 surgery.

Infant surgery is incredibly complex.
Even fairly common and essentially simple procedures like pyloromytomy (the lancing of a small swollen muscle) are incredibly complex and dangerous until the necessary knowledge and skill come together.

1     The diagnosis is all-too-often managed sloppily, resulting in totally unnecessary trauma for the parents and the baby, and sometimes irreparable and long-term damage to the little patient.  But when PS is not suspected and not present in the family tree, its symptoms typically take a few days or even weeks to form a clear picture.

2     During my younger years I felt like a freak because my hard-to-hide stomach scar seemed to me unique – even the school doctor didn’t seem to recognise it.  In fact it is far from unique, but I’ve learnt that even in the 1940s surgeons could have used any of 3 or 4 different incisions to get to my murderous muscle.  The medical world has strong opinions about technique (not unlike Toyota, Ford and GM buyers) and tends to work with and perfect what it’s been taught.  Several reports I have read dismiss the supposed benefits of any one incision as compared with other options.

3     There is a similar diversity of opinion about the value of medical treatment for PS, about anesthesia and pain control (or even the lack of it in some antediluvian quarters), about wound closure and about the importance of the patient’s feelings about the final appearance of the scar.

All the above has become increasingly clear as I have worked through the medical world’s studies, findings and discussions of the 1920s and since.  Take as an example this summary of the findings of London surgeons in 1984:

Wound from a transverse incision for the relief of infant pyloric stenosis. These incisions became standard during the 1980s.

No significant difference in the incidence of wound failure could be shown between 46 paramedian and 50 transverse incisions.  Those [adult] patients who were considered to require a vertical incision were randomized between median and paramedian incisions.  No significant difference in wound failure rates between 39 median and 40 paramedian incisions could be demonstrated.  No advantage or disadvantage of a transverse over a vertical abdominal incision or of a paramedian over a median incision could be shown in this study.

[For the terminology in this citation check a previous post.]

This next report, from London’s premier children’s hospital, considers the longer term effects of the incision chosen for the 1980s PS baby:

A vertical incision should be avoided because the scar becomes increasingly obvious as the child grows, especially if a paramedian incision has been closed with tension sutures.  The skin of the hypochondrium in the infant migrates superiorly and comes to lie over the lower chest in the adult, so an unusually high transverse subcostal incision in a neonate may give rise to an ugly thoracic scar in adolescence.  Wound dehiscence after pyloromyotomy used to be fairly common…, and remains so in those undergoing operation under local anaesthesia.

Chemistry was never my best subject at school, so a Review published in 1987 on the anesthesia of 350 PS Irish infants (but currently only available in summary form) won my deep admiration and respect for those who have devoted themselves to the safe relief of pain and suffering when surgery is needed.  This Dublin team wrote about PS:

Bennet (1968) and Touloukain and Higgins (1983) have described the complex electrolyte and metabolic disturbances which occur in this condition, and which stem from the loss of hydrogen, chloride, sodium, potassium and water in the vomitus.  Initially, the kidney compensates by excreting sodium and potassium bicarbonate, but when hypokalaemia and hyponatraemia supervene an acid urine is produced, aggravating the hypochloraemic hypokalaemic alkalosis.  A compensatory respiratory acidosis is usually present.  Lactic acidosis secondary to hypovolaemic shock occurs in severe cases.  These starving infants are prone to hypoglycaemia.

Although the management of this condition has improved considerably, some published series show a small but significant mortality.  No patient died as a result of congenital hypertrophic pyloric stenosis or pyloromyotomy in this hospital during an 8-year period in which 350 pyloromyotomies were performed.

Not every reader of this blog will be as interested as I am in the material included in this post, but I trust you now have a better idea of the complexity of what has often been called “simple” and “elegant” infant surgery.  If you have lingering doubts, do read more by following the links or contacting me.

This material when compared with the medical journal reports and issues of the 1920s, ‘40s and ‘60s also makes clear that medical science, and infant pyloric stenosis treatment in particular, have made enormous progress.  My planned reviews of some of the available articles from the two most recent decades will show that progress continues on several fronts.  I am grateful for that ongoing improvement and what it means for recent PS survivors.

Knowing something about why and how I came to be a PS survivor has made a big difference for me.

Past Pylorix Pages – Pyloric Stenosis treatment in the 1980s (1)

Interest in infant pyloric stenosis (“PS”) is certainly not falling away: just the number of medical journal articles on its causes, incidence, treatment and after-effects readily available on websites is a clear indication of that.  For most of my 60-plus years I have searched the public libraries – and been sad to find that even the catalogs and shelves of the largest have only the most general and usually outdated information on PS.  The web has certainly opened up the world in many ways!

However, my web-based research on this subject found a 50% increase in medical journal articles and reports published back in the 1980s compared with the number I logged from the previous decade.  How sad that for so long all this information was effectively restricted to doctor’s offices and university libraries, and that even now some of the material that is surely of historical interest only is still available to the general public only at great cost (sample: US$35 per article).  But I am very thankful that several leading journals now make all but their most recent issues freely available via the internet.

Although my work has mapped some of the progress that took place in some of the subject areas related to PS, it is also glaringly obvious that our understanding of the causes and therefore the reduction or even prevention of this disease is making little progress and is probably in the “too hard” basket.

What did the 33 reports and extended Comments and Letters related to PS during the 1980s show?

1               Is the incidence of PS rising or declining?
There were Reports from several countries about whether the incidence of PS was rising or declining during the years up to 1990.  It seems on balance that the incidence can fluctuate quite considerably: in Central Scotland PS was reported as having increased from 2.1 per 1,000 live births in 1970-77 to 5.2 per 1,000 in 1978 and 8.8 per 1,000 in 1979, this last being the highest figure ever recorded in the world.  Analysis of these figures could not find any pattern or factor that might have caused this.  Statistical work inEngland andCanada found similar though not quite as extreme fluctuations.  Suggestions that increased numbers were due to better diagnosis did not stand up to closer analysis.

2               How do we come to get PS?
Another subject that gets frequent attention is the genetics of PS, but none of several Reports on family links really added anything substantially new.  It was again found that the strong link between women with a PS history and their children’s having it had a genetic cause and was not related to the baby’s environment in the womb.

3               Is PS for the very young only?
Two Reports reminded everybody that PS can very sometimes develop in infants well after the usual “window” between birth and 3-4 months.  Cases were cited as starting at 5.5 and 22 months and another at 2 ½ years.  Two of these cases were proved at these babies’ Ramstedt operation.

4               Should any surgeon and hospital treat PS?
A big issue in the UK during the 1980s was: is PS better treated by a pediatric surgeon and a pediatric anesthetist in a large city children’s hospital, or can it be adequately dealt with at the local hospital by a general surgeon?  Five articles (including one from Scandinavia presented statistics and arguments.
The team at the Royal United Hospital in Bath found that its use of local anesthesia in the majority of cases resulted in less post-operative vomiting, and several other benefits.  But it also found a greater incidence of complications and the Report recommended that pyloromyotomies be done by paediatric specialists.
Another British Report was damning: of 101 PS operations during the later 1970s at the Gloucestershire Royal Hospital, including 1/3 with local anesthesia, 20% resulted in complications (many with wound and other Staphylococcus aureus infections) and two deaths.  No demonstrable benefit in using general anesthetic was found.  It seemed that at least some British hospitals had made little progress in what was in the past the Number One danger for infant (and other) surgery: skin and gastro infections.
A third British Report stated: Hypertrophic pyloric stenosis is generally easy to diagnose and is treated by the most standardised operation in surgery.  This may, however, lead to its being performed by relatively inexperienced operators.  Recent figures from two district general hospitals show that breaches of the duodenal mucosa and dehiscence [rupture] of the incision are eight to 10 times more common among occasional operators than among experienced surgeons.
A 1988 Report from London’s Great Ormond Street Hospital for Children was able to show in some detail that complication rates there had in effect fallen into line with those often reported in the USA.  It needs to be remembered that in 1945 many UK hospitals reported death rates from PS up to 25%, when those in the US were between 2% and zero.
In the light of the weight of advice against PS being treated by specialists in general hospitals a Surrey surgeon reported on the more favourable experience with 46 PS babies at his hospital between 1984 and 1989.  All were given general anesthetic and right upper transverse incisions.  There were no deaths and 78% made uneventful recoveries.  In one respect their data was far more favourable than that from the US: only 6.2% of the British babies were submitted to radiology (x-ray) whilst in some US surveys the figure was 80%.  The British surgeon concluded with pride: The results of this study show that such patients can be successfully treated in district general hospitals, and three areas merit special attention: meticulous surgical technique, the use of prophylactic antibiotics, and early graduated feeding.

5               What was notable about the 1980s treatment of PS?
Four of the articles were reviews of the diagnosis, treatment and results of infant surgery for PS.  These also emphasise that  The operation of pyloromyotomy as described by Ramstedt in 1912 is simple and effective, but attention to detail is necessary if minimal morbidity and zero mortality are to be achieved.
A German article observes that radiological investigation doubled there between the 1960s and ‘70s, from 9% to 19%.  The second of these decades also saw a reduction in post-operative vomiting and an average earlier discharge from hospital, with no deaths and reduced morbidity (complications).
A Report from Perth in Australia, based on hospital records and census data for 1971-84, found no link between PS and breast feeding or birth order.  Low birth weight, short gestation pregnancies, and a paternal family history of the disease were significant features: 11% of the cases had a family link, 55% of which being with the father’s side and 25% the mother’s family.  Several aboriginal cases were noted – for the first time ever.
An article from Denmark reminds us that in Europe medical treatment of PS is still common although less and less so.  Between 1950 and 1984, 679 patients were treated at a regional hospital, 114 of them medically.  The study noted that  Complications occurred in 17% of medically treated patients and in 8% of surgically treated patients.  Six deaths occurred among the medically treated and four among the surgically treated patients.  During the study period, a shift toward centralization and surgical treatment took place.

Unanesthetized circumcision. Note the classic face of pain with prominent brow bulge, facial grimace, and gaping mouth. Reprinted with permission from The Saturday Evening Post Society, copyright 1982 BFL&MS, Inc.

6               Infant surgery without pain?
The “big issue” for many during this decade was the Article by Dr K J S Anand disclosing that much infant surgery at that time (and presumably for many years) had been done without any form of anesthesia because of the widespread belief that “babies don’t feel or remember pain”.  My reading leads me to note that Reports from leading pediatric surgeons and large city children’s hospitals on both sides of the Atlantic often mention the use of general or local anesthesia; I conjecture that the idea that “babies don’t suffer” developed because in any but the large city pediatric hospitals it is often not easy to find enough specialists in infant anesthesia, a skill quite distinct from the safe anesthetising of older childen and adults.
I have included links and several posts on this blogsite on this subject and will continue to do so from time to time.
I find it outrageous that despite the research reports and advocacy on infant pain and trauma that is now available, the web has reported (1) a continuing reluctance in some quarters to anesthetise infants for surgery, and (2) that male circumcision with and without pain relief continues to be practised, even outside the religious faiths that regard it as compulsory.

There are several subjects not mentioned above that also attracted considerable attention during the 1980s, notably the long-term after effects of infant surgery for pyloric stenosis.  Watch this space during the next week!

Links and references to the material in this blog are available on request and will be added as time allows.

Past Pylorix Pages – Pyloric Stenosis treatment in the 1970s (2)

The 1970s medical journal articles about infant pyloric stenosis (PS) that interested me most I have kept for this post.

But first an observation: during the 1970s it became clear that countries other than those in Europe and North America had started making greater contributions.  Whilst the majority of the 21 articles about treating infant PS I have drawn on for the previous and this blog come from the “old world”, almost half come from Denmark, Hong Kong, Iran, Israel, Singapore, South Africa and Sweden.

In 1981 Iranian pediatric surgeons wrote an interesting and telling history and comparison of PS treatments… in the German language.  They tracked and explained the change from the medical to the surgical treatment of PS over 23 years and 244 cases in Tehran’s hospitals between 1958 and 1980.
During this period, 127 cases were treated with atropine and similar drugs that relax the baby’s pylorus and stomach (and other muscles).  More often than not this medical treatment, extended over a month or more, will allow enough food to pass to keep the infant alive long enough for the enlarged pyloric muscle to do what it does usually: at the age of 4-6 months it starts to return to normal sufficiently for the baby to survive without surgery or further medication.
It has been found that the pylorus that is not cut at surgery will often return to normal in later life; however, in other cases it continues to interfere with feeding, sometimes enough to warrant surgery later in childhood, adolescence, or even adulthood.
Between 1958 and 1965, Tehran’s pediatricians were divided on the preferred treatment of PS, and as a result 78% of 138 cases during those years were treated with medication.  During the latter years of the trial (1966-80), surgery was advised and practised for 83% of PS cases.  A marked change: why did it occur?
The report points out that early in the 20^th century, surgery for PS was wanted only by the most desperate parents and done only by risk-taking surgeons, as the deathrate from surgery (between 25 and 90%) was much higher than that from atropine and other medical remedies.  But during the 23 years’ review, the pediatric community in Tehran became convinced that it should now advise surgery more readily.  This reflects the shift that I reported happening in earlier decades in the English-speaking world, though not in every other country.
The Iranian surgeons worked through a transverse incision (as had become common in the USA), and general anesthesia was the rule, with local pain control used in certain cases (as elsewhere).  Complications and morbidity (continuing health problems) were tracked and found to be more frequent among medical cases.  As I have mentioned in earlier posts, the reduction in hospital stays which surgery made possible was a major advantage, and x-ray exposure also fell dramatically as babies no longer had to be monitored over a lengthy period.

It is interesting that this article was written in German, reflecting substantial links with a country which also took its time to move from medical to surgical treatment for PS.

The second article of special interest to me came from the pediatric surgeons at the Sacramento Medical Center in California.  They reviewed 50 cases between 1963 and 1970; it is noteworthy that only 38 were Caucasian, only 8 of 39 were first-born males, and only 4 of 11 first-born girls.  Whether or not PS is more common among first-borns is still far from clear.
Some of the information given is enough to give a non-professional but interested PS student some idea of the many considerations that surround PS treatment.
> 8 of the 50 cases were found to be “severely alkalotic”: they had a low CO2 level which is a warning about an infant’s ability to withstand a general anesthetic.
> Of the 50 babies, 46 went to surgery, of whom 44 had a general anesthetic and 2 local.
> Four patients were treated with intravenous fluid and electrolyte infusion, as well as lavage (stomach washes) and graded feedings.  There was one death in this group: a baby who arrived in a very poor condition after 3 weeks of vomiting and died two days later.  The other three stayed in hospital between 12 and 16 days, followed by further medical therapy at home.  These 3were followed for a minimum of two years, and each had intermittent signs of gastric dysfunction, poor feeding habits, intermittent episodes of nausea and vomiting, and retarded growth and development.
> The babies who had surgery had a 26% complication rate (pneumonia, wound infections, and an incomplete pyloromyotomy).
> In addition to this, a terrible 39% needed repair to the duodenum during surgery (a high risk with this operation) and two cases suffered liver damage, it seems as a result of too many enthusiastic physical examinations searching for “the pyloric olive”!
> This report also includes an interesting discussion of the several incisions used for PS surgery, and comments that each seems to have its supporters.  Historically, the various abdominal incisions used to treat PS were developed to minimize wound rupture, something that brought with it high mortality in small, starved and weak infants.  The incisions used in the 1970s included those mentioned in the post on the 1960s.  This report from Sacramento details the method linked with each incision and adds transverse (horizontal) skin incisions situated to the right and above the umbilicus.
> It is remarked that the actual abdominal incision used is essentially a matter of cosmetic consideration only.  In fact it often seems to depend on the personal preference of the surgeon.  It seems to me that in actual fact the cosmetic result depends little on the incision used and a lot on the skill of the surgeon and the later development of the patient’s belly.
Right paramedian (vertical) incisions were used in 18 of the 46 surgery cases in this series, subcostal (under the ribs) in 9, and transverse in 19.  All three wound infections occurred in the last group.  There were no wound ruptures in this review.

The final article that interested me especially was a careful study of abdominal wound rupture reported in a 1972 Bulletin of the Hong Kong Medical Association.
During 1967-71, 5749 abdominal operations in a Hong Kong hospital were studied to assess the incidence and causes of wound dehiscence (or rupture along the incision line) after the surgery.  593 of these operations were done on pediatric patients (under 12 years), with a dehiscence rate of 3%; among the adults (57% of whom were aged between 51 and 86) the rate was much lower, 0.89%.  The overall rate of wound rupture was 1.1% which it is claimed compares favourably with other studies.
Of the children 79 had tranverse incisions, with 10% of the wounds rupturing.  86 of the children had vertical incisions (mid or para-midline) with 12% dehiscing.  I note that both this and the previous report I have outlined seriously doubt the advantages of the now popular transverse incisions!
Among the children, biliary atresia, intussusception and congenital hypertrophic stenosis were the three conditions which were associated with very high incidence of wound disruption.  Although only 8 of these procedures involved babies with PS and this is a small number on which to base conclusions, the report found it that these babies had the highest dehiscence rate, at 25%.
PS is often diagnosed late after prolonged starvation with vitamin C and protein deficiency.  Biliary atresia brings with it poor general health, malnutrition, and abdominal distension.  Good wound healing is much hampered as a result.
Transverse incisions have long been strongly favoured, especially in the US, because according to reports like that of Campbell and Swenson in 1972, transverse incisions in infants have a dehiscence rate around 0.2% compared with 3.37% of vertical incisions rupturing.
However, the two Hong Kong surgeons found there was little difference between the rates of wound dehiscence after transverse and vertical incisions among the paediatric age group.

And they comment that  In spite of the vast amount of work that has been carried out in the last three decades on wound healing, there is still no reliable method of improving and accelerating the healing of wounds.  Abdominal wounds continue to dehisce occasionally.

Past Pylorix Pages – Pyloric Stenosis treatment in the 1970s (1)

As someone who has been affected by infant pyloric stenosis (PS) and has remained interested in this condition, I have been fascinated by what the publicly available medical literature of the 1970s contributes to my knowledge and understanding of PS.

My overview of this material draws on no less than 21 reports, and I’ll have to devote two posts to the information I have found.  Time keeps me from providing links to all these articles, but interested readers are invited to contact me about these.

As in the 1950s and 1960s, it is clear that during the 1970s the spotlight of the medical journals continued to move from merely describing PS to statistical and other research work to better understand this mysterious malady.

What have I found the most significant features and findings of the medical world’s work on PS during the 1970s?

It seems that work mushroomed on the causes of infant pyloric stenosis and the profile of its sufferers: half the reports belong to this area.  Their subjects covered just some of the still many unknowns of PS, but they nevertheless make an impressive list.

General studies
A large study of PS cases in three large Belfast hospitals in Northern Ireland was based on 521 cases over 13 years (1957-69).  It found a bias towards higher social classes (notably the children of doctors and police), breast feeding, being first-born and being winter-born.  It found that the mother’s age was not a factor.  The size of the pyloric tumour was usually found to be related to the size of the patient, rather than to age or the duration of PS symptoms.  The babies’ subsequent growth and development were in the anticipated range.  PS infants had a higher incidence of other disorders, but without any clear link with particular conditions (except hiatus hernia, a malformation of the oesophagus) or their severity.  The babies also had various hernias more often, likely as a result of vomiting, the surgery or more crying in a weakened state.

Genetics and heredity
Three of the articles dealt with what we can learn from the fact that PS runs in some families.  Several studies of twins have shown that identical twins both have PS quite often but fraternal twins no more commonly than siblings.  This shows that in families, heredity plays a much larger role than environment, contrary to the suggestion that it’s a family’s food, surroundings and lifestyle that causes PS to cluster in some family trees.
A brief report concerned triplets born in 1973 all having PS, confirmed at surgery.
A telling 1979 report concerned a man who had been operated on for PS having three sons with the same condition.  A genealogical table of his family showed that both his parents had relatives with PS, but that none of his wife’s relatives had it.  So it was suggested that the man’s parents carried genes predisposing to PS and transmitted these to him in such quantity that he and all his children acquired the condition.
This led the writer to conjecture that there are a number of different genes which may all predispose one to PS, and that it is necessary for a certain number of these genes to code for the condition to develop.  It further seems that the female makeup is protected to some degree so that a greater genetic load is required for girls to acquire PS.  This greater genetic load would also explain why the children of female patients are more likely to develop PS rather than those of male patients.

Ethnicity and PS
A number of studies dealt with the fact that among ethnic groups, Caucasians have the greatest incidence of PS.
A 1974 letter from a doctor in Barbados made several observations –
1) Several British and European countries had reported a falling incidence of PS, from around 4 to 2 per 1,000 live births.
2) At the same time the trend was upwards in other countries such as the West Indies.
3) A study in Hawaii confirmed the relatively high incidence of PS among Caucasians whilst recording no cases among the State’s 11,274 Chinese infants born in a given period.  The authors of this report claimed that cultural differences were of minor importance in Hawaii, that medical facilities were shared, and that their findings reflected variations in susceptibility which were determined by race.

A Singapore Medical Journal article in 1976 also dealt with this subject.  With no studies of PS incidence published from comparable Asian countries, and with Singapore being a truly multi-cultural State, it was an ideal location for a study on the ethnicity of PS incidence.  A review of 141,215 live births in Singapore during the three years 1972-74 showed the Chinese as having 21.2 PS babies per 100,000, the Indian population 35, and the Malays 9.7.  The comparable figure among Caucasians would be between 200 and 400!

Heredity vs environment
Two studies dealt with the relationship between mothers and their PS-troubled babies.  A 1974 article found that on the basis of 526 patients not only do very few PS babies have A and AB blood, but that their mothers have it even less often, suggesting another possible factor in the pre-natal environment increasing the possibility of developing PS.  The report mentioned that experimental work in dogs had succeeded in reproducing PS in pups born to mothers who were treated with pentagastrin during pregnancy.  This animal model may be relevant to the disorder in humans and indicates a mechanism by which a mother can affect her child before its birth.
A 1976 medical genetics journal also studied the mother-fetal interaction for gastrin production and sensitivity, whilst several other studies make it clear that the link between maternal gastrin and infant PS is far from established.  The article states however, that only 37% of PS cases having a clear genetic factor, and yet this is the only clear guidance that can be given to parents who seek genetic counselling.  We must continue the search for environmental factors to account for the other risk factors and cases.
Another report on the blood group distribution of 486 patients also noted the excess of O and B blood groups among PS sufferers, and on the basis of blood bio-chemistry it suggested a possible association between the development of PS and the efficiency of fat absorption in the infant.

Mothers and prenatal stress
100 mothers of infants who had had PS surgery in the Cardiff region of South Wales were studied for a 1978 report.  It found that these mothers were normal people: the personality dimensions of neuroticism and extroversion as measured by the Eysenck Personality Inventory showed no significant differences between the subjects and the norm.  The situation which can give rise to the birth of a PS baby is therefore not one of neurotic individuals over-reacting to everyday events, but of normal people reacting to particularly stressful events.  During the interview the subject mothers were found to be significantly more anxious than the average.  The researchers conclude that normal mothers who have been subjected to an increased number of particularly stressful events during pregnancy have an increased risk of giving birth to a child with hypertrophic pyloric stenosis.  I have mentioned in another post that I believe my PS was related to the stress factors my mother suffered in 1945.

Long-term effects
Several studies on the follow-up of PS surgery and its long-term effects were published in the 1970s.
The November 1971 Scandinavian Journal of Gastroenterology reported a follow-up survey of 14 PS patients 21 – 27 years after their surgery.  It found that minor stomach discomfort was common and two had somewhat more severe symptoms.  Acid secretions were generally also higher than average but still within the bounds of normal.  Barium meal studies showed no gastric, pyloric or duodenal abnormality, but two suffered from gastric retention, the delayed emptying of the stomach and probably linked with the pylorus’ functioning.  However, none of the 14 reported “dumping”, a term that describes a group of uncomfortable or painful but poorly understood symptoms that affects many patients after gastric surgery including the pylorus.
Another Scandinavian study, this one from Sweden, was based on follow-up interviews conducted in 1970 with 195 PS boys in relation to their military service; all had been medically treated (as happened more commonly in Europe) at the Children’s Hospital in Gothenburg between 1922 and 1942.  This study was covered in two separate reports; it found that morbidity (the incidence of illness, disease and death) was no higher among PS sufferers than the general population; in fact the incidence of peptic ulcer at age 50 was less than half the norm.  But especially when PS came with severe malnutrition it seemed to affect negatively adult height and weight, as well as performance in intelligence and adaptability tests, and in men their general fertility and the siring of girls.
However, an Israeli study of 228 infants were operated on for PS between 1946 and 1977 at the Tel-Aviv Municipal Medical Center was even more concerning.  41 of these patients aged from 15 to 30 years were evaluated for morbidity (the incidence of illness, disease and death) in the area of gastrointestinal diseases and their possible link with the operation.  24 of the 41 patients had gastrointestinal symptoms, including dyspepsia, diarrhea, constipation, and abdominal pains.  X-ray examination of the stomach was performed on 31 patients, in order to examine the structure and function of the stomach.  Five patients showed clear signs of ulcer disease, four in the duodenum and one in the stomach.  Another five patients showed mild deformation of the duodenal bulb (the pyloric end of the duodenum) and two showed signs of gastritis (inflammation of the stomach lining).  No correlation was found between the severity of the congenital PS and the presence of later illness or disturbances.
The fifth report on the long-term effects of PS is one I have mentioned in another post, a study that has been circulated quite widely on the effect of PS starvation on learning.  A number of specific learning abilities together with the general adjustment of 50 subjects aged 5 to 14 who had had PS were studied and compared to those of 44 siblings and 50 matched controls.  Starvation resulting in a reduction of more than 10% of the expected body weight in infancy is quite common in PS cases, and was associated with poorer learning abilities, especially those involving short-term memory and attention.

On a more positive note, a project reported in a 1975 Pediatrics journal found that PS and its surgery do not increase the incidence of allergies and asthma.

Vomiting after PS surgery

Many parents are affected by their baby’s continued vomiting after PS surgery, but this is hopefully mild and passing, the result of bruising from the handling of the baby’s stomach.  However, a British report published in 1979 dealt with a more serious possible cause.  The study found that of 72 PS infants who had surgery at a Sheffield hospital, 36% “experienced moderate to severe postoperative vomiting of sufficient intensity to cause the postoperative feeding regimen to be modified or interrupted.”  Two factors were found to be significant: significant damage to the lining of the oesophagus was found in 30% of patients, and others had vomited blood before surgery, caused by damaged oesophagus.  Babies with these problems had a prolonged stay in hospital.  It was recommended that doctors check the oesophagus of PS babies before surgery to anticipate and treat this damage.

Two observations to end with…

1. The results of research will often depend to some or a large extent on the aims, parameters and methodology of the project.  Several reported finding mentioned here are disputed by other reports I have read, for example the likelihood of the mother’s gastrin secretion affecting her baby before birth, and the relationship between breast feeding and PS.
2. It is clear that the causes and effects of infant pyloric stenosis are complex, and despite much research work having been done over more than a century, many of them are still unknown or just partially understood.  Yet I have found the available reports give me a much better “feel” and some understanding of quite some of the whys and wherefores I have about my own PS story.

Next blog – some more interesting material about infant pyloric stenosis from the 1970s.

Creativity can be healing (3)

My last two posts have visited some of the places on the internet where people share the impact of surgery in story, image, and poetry.

This last of this series will look at two more websites, a little more unusual than the others I have reviewed.

Ted Meyer records people’s scars in their actual form at Scarred for Life.  Like the other creative people in this series, Ted Meyer’s interest in combining medical science, life and art started from serious illness in his own infancy.  His art deals with the emotional impact of pain and healing on everyday people — patients, families, and medical personnel.  He writes: Scars mark a turning point in peoples’ lives; sometimes for good but often otherwise.  Each scar comes with a story.  Why is it there?  Would the person have died without surgery?  How did the “scaring event” affect them emotionally?  Scars can mark entering into or out of a disability.  Going from cancer to health, limited mobility to full movement.  They freeze a moment in time, a car accident or gun shot.

Ted Meyer's portrayal of a subject and his scar from old-style surgery for pyloric stenosis

Again like the three previous artists in this series, Ted Meyer’s focus for this project is the scar, for it is this that brings together life-saving medical knowledge and skills with the subjects’ personal stories and emotions.  He does not use photography or paintings for this project however, but transfers paint from his subject’s scar site directly onto paper, using the rubbing technique, one of humanity’s oldest ways of creating prints of anything from leaves to graves on a cathedral floor.  He enhances these prints with the brush and pencil.

On YouTube Ted Meyer speaks about his art, selections of which he has exhibited in several U S cities as well as in Istanbul and Osaka.

Clarity Haynes’ scar art is intentionally and resoundingly feminist in a way that not all women will find comfortable or necessary; I also believe that many men will value her project with great respect and admiration – both in a non-blokey way (as we say that in Australia).

Clarity Haynes began the Radical Acceptance: Breast Portrait Project in 1998 with her own nude self-portrait.  In her mid-20s she decided on making a portrait of her torso because she was feeling uncomfortable with her own body.  She found the experience transformative: it made her feel much more comfortable and accepting of herself, and she decided to offer this opportunity to other women.  Her website tells us:  Since then she has sought out and found enthusiastic participants at women’s festivals, fairs and similar events.  Each sitter enters Haynes’ booth to pose, record her thoughts in a book (often handwritten there and then), and consent to having a photograph taken of her nude torso alongside the finished portrait.

Haynes has completed over 500 breast portraits, and has exhibited her work at several locations throughout the USA, as well as on the web.

Like Clarity and other people I know, I have found sketching and photography a helpful and healing way of objectifying my self-image: by seeing myself as others see me I have come to terms with the fact that I am both OK and imperfect; I am much more than my scarred abdomen and my lanky, aging body; I now feel this as well as know it.

Let me quote Clarity again: My work includes portraits of those born with male bodies who have transitioned, as well as those living in female bodies whose identities do not match those dictated by society… This project is about finding dignity and beauty in the physical characteristics of the body that our popular culture often ridicules and heaps with shame, and in the process allowing the models who participate to feel pride in their particular selves – and by extension, the viewers of the work as well, regardless of their gender.

One of the triptyches included in the Breast Portrait Project was especially powerful to me, in part because the model was portrayed at three stages of her life.  In the first painting we see this woman as she might have appeared in her dreams: a pristine woman without a trace of life’s ravages, and the second portrays the effects of age on our bodies – just as our minds and souls mature.

In the final portrait of the three, Clarity Haynes’ subject has allowed us to share with her something of her deep and private pain.  Clarity’s subject does not have the ideal body of her dreams, and she has had to cope not only with age and a mastectomy but also with a large old-style scar, very similar to mine from pyloric stenosis surgery; it marks her as having been restored to life at a very early age but like me it left her to grow up feeling very damaged and alone.  Clarity Haynes added the revealing comment that this woman asked me to ignore the scar on her belly, which was the result of a surgery she had received as an infant that saved her life.  I asked her for permission to include the scar, because in fact it was difficult to ignore.  She agreed.

Isn’t it revealing and powerful that a mature-age woman can be quite willing to share her aging and mastectomied torso, but not the scar she has lived with from early infancy?  And what does it tell us the visitor that she decided to allow the scar from her infancy to be included?  No wonder this triptych harmonised so exquisitely with me.

2011 in review

The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog. Regular readers may find this interesting reading. Best wishes to all our readers, regular and casual, for a good – better – best new year 2012.

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 7,300 times in 2011. If it were a NYC subway train, it would take about 6 trips to carry that many people.

Click here to see the complete report.

Creativity can be healing (2)

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

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

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

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

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

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

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

Fred - 1945

Tamara - c. 1985

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

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

She concludes with this observation:

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

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

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

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

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