Tag Archives: ongoing effects

Infant surgery then and now

Infant surgery has seriously affected some of us whose lives were saved by it.

This is especially true of those like me who are now at the older end of life: we have been affected emotionally and psychologically despite having no conscious memories of the surgery we had so early in our lives.  Our bodies record potent trauma even when our mind cannot.  This does not seem to affect everybody but others’ stories and tell-tale signs are too similar to reject as fiction.

Surgery in the past was rather basic, especially when performed on infants and in the light of current practice. Often in the not-too-distant past no safe general anesthetic and trained pediatric (children’s) anesthetist were available: general anesthetic agents were hazardous for infants in their first two years unless a very careful and experienced anesthetist was available.

Local anesthesia affects the tissue at the operative site, making it hard to work on, so many surgeons would also exclude its use.  So the squirming baby was strapped down, and quite often given a shot of whisky or a sugar cube laced with rum to somewhat distract it.  Or a paralysing drug was injected and a breathing tube inserted.  No picnic for the baby, and it must have been tough on the operating room staff.

The hospital regime then was also “different”.  Two weeks or more in hospital was standard after an “uneventful” pyloric stenosis (“PS”) operation, and often the mother was allowed no contact for fear of infection, which still killed about 50% of PS babies post-op in UK public hospitals after WW2.  I understand my mother had to deliver breast milk daily over 15 km to the hospital for 2 weeks but was never allowed near me, let alone nurse me.  (My surgery was at 10 days so what an introduction to nursing her first baby I was for her…)

Starvation pre-op plus surgical shock plus maternal deprivation – none of it remembered of course, but it has really affected me and others of that generation long term.  Add to that: some years later, these baby-boomer and earlier parents were totally unaware and incapable of managing their own and their growing child’s developing ptsd.

Woodstock-1But hey!  Ever since Dr Conrad Ramstedt and others began publicising their newly discovered “pyloromyotomy procedure”, most of us PS babies no longer died of dehydration and starvation.  Even those who had the PS op in its early days have mostly lived to tell their tales and have often lived well.

But I am also very thankful that despite the many post-op issues reported on Facebook and other form sites, some of the old damage is no longer being inflicted today.  Infant surgery today, even in its most severe forms, is now far less traumatic for all concerned, and most hospital regimes are sensitive and aware.

Are Pyloric Stenosis problems history yet?

In my previous post I explored the horrible old mantra that “babies have no brain and therefore will not feel or remember pain”.

When I was just 10 days old I had my first surgical operation, for a pyloric stenosis (“PS”, a blockage at the stomach’s outlet) which occurs fairly commonly in between 2 and 5 baby boys and about one girl in every 1,000.  In 1945 (and for several decades after this) the trauma easily caused by what is today regarded as simple surgery was not understood –

  • the operation was often done without a general anesthetic, sometimes even without local pain control because of the major hazards and possible side-effects of each;
  • hospital stays after such an operation were routinely 2 weeks;
  • in hospital sick and recovering babies were routinely separated from their mother to reduce the danger of infection and they were fed on bottled milk;
  • the effects of these practices on the infant’s parents were usually discounted and masked by a code of silence, which often made them even more toxic in the long-term on parent and patient.
  • What I have outlined here has had a lifelong effect on me, and most likely also my parents, although they maintained their silence to their deaths many years ago.

Nerdy MD2One effect of this on me has been a lifelong and obsessive interest in PS and infant surgery.  In recent years what I have learnt and continue to learn has been channelled into teaching and advocacy for the a list of “issues” around these two subjects –

  • What is PS and how was it treated yesterday and is it treated today?
  • Can surgery for infant PS be avoided?
  • How can PS and its surgery affect the infant’s parents?
  • How can they affect the patient in the immediate and long-term?
  • Why is the diagnosis of PS often so frustratingly delayed and what can be done about this?
  • How can parents deal with the problems babies frequently have after the operation?
  • How can PS survivors deal with some remarkably similar problems that all-too-often arise in adult life?
  • Do babies feel and remember pain and other trauma of their pre-verbal stage of life?
  • What are the symptoms of PTSD that seem linked to early infant surgery, and what therapies and programs are available to those affected?
  • Since gaining access to the internet in 1997, I have learnt much about all the “issues” listed, from websites, blogs, social forums, and some valuable personal interactions and friendships that have resulted.

In 2015 I plan to continue sharing and interacting with the PS community via this blog, as well as on several social forums, notably the various Facebook Groups committed to offering support, sharing information and raising awareness about PS.

SeatonHarlan age 4 Fb 140502-2PS survivors and their parents on Facebook sometimes express their profound gratitude that some of the issues I have listed above are now largely becoming consigned to the historical record.

Greatly improved support for parents, good pain management, new surgical techniques that much reduce disfigurement, and short hospital stays are now standard.  Parents may also remark that there seems to be a slowly growing change in the medical professions’ awareness of PS and their attitude to PS parents: less professional paternalism, arrogance and conceit.  Changing social attitudes and better education in medical school seems to be germane to this.

However, it is also quite clear that we are far from being able to “move on” and go fishing!

A pyloric stenosis baby

These are the very first photos of my mother with me, and 69 years later they keep touching me deeply.

Pic 12194510-1 FLVClick on the images to enlarge them. Yes, they are very grainy: they were taken just a few months after the end of World War 2: my Dad was never much of a photographer, but more to the point, my parents and their country (the Netherlands) had just been liberated from five terrible years of occupation and oppression.  But despite the obvious poverty of the photography these images capture enough.

My composed mother

Photos of a yummy mummy with her first baby are usually drenched with glowing pride, obvious health and radiant happiness.  Sadly, both these photos are somewhat different.

Despite being a devout Christian committed to a life of serving others as a Jesus-follower, Mum’s life of 28 years to this point had not been easy.

  • As a child she had sustained a head injury which left her with frequent and severe migraine headaches and later, early onset Alzheimers.
  • During the early Depression years she had left home in an idyllic small town and moved 200 km north to Amsterdam, hoping to study medicine. But her frequent headaches forced her to abandon her studies.
  • The student with whom she fell in love was a good man but also a compulsive networker and more interested in following lectures and making new friends than in finding work so that he could marry his fiancée. In later years she would still remember the nightmares she had in those years.
  • During World War 2 the Dutch witnessed ruthless Nazi destruction and atrocities, the programmed dehumanisation and then menacing removal of Jews, and the brutal suppression of Dutch dissent. In 1943 my father at last obtained a church appointment which enabled my parents to marry.  But this also meant that my Dad as a public figure in town was sought as a hostage whenever the Germans carried out reprisals for some act of the Dutch Resistance.  He survived this time but did develop TB (which we are grateful was treated without apparent damage).
  • As was normal at the time, my mother was never very open about her inner life and its stories. Not only did she not speak easily about herself; she batted away questions she found uncomfortable.
  • Early in 1945 she became pregnant with me, her first child. The joy and glow of pregnancy must have been somewhat clouded by living over 300 km from her parents and sisters, a relatively small distance today, but not in the ravaged Netherlands of 1945.
  • The day after I was born Dad wrote to his parents: “he loves sleeping and eating, in this he is like both his parents, not to mention one of his grandparents… we don’t need to tell you how much we have enjoyed and been thankful for so much good fortune and wonder, for answered prayer and dreams fulfilled!”
  • Less than a week later my parents’ firstborn was vomiting himself to death and was diagnosed as suffering from infant pyloric stenosis. On day 10 my lanky little form lay on an operating table, bundled up for warmth and strapped to a small cross to keep me still, as general anesthetic was usually regarded as too hazardous for infants under 2 years old.
  • Infection was still a huge hazard in 1940s hospitals and particularly after surgery on tiny people in an emaciated condition. This meant a standard of two weeks of post-op care in hospital, and for much of that time, isolation from family including even a nursing mother.  Mum had to express milk daily and deliver it herself to the hospital 15 km away by steam train.

These two photos were clearly taken after my return home.  As is fairly usual after pyloric stenosis is corrected, my weight and condition quickly returned to normal, and this is confirmed by the weight chart my parents sometimes showed me (but sadly, later tossed out).

On one photo my mother is uncomfortable with the bright sunshine.  Both show her as young, well and caring, but also as formal, unsmiling and preoccupied with her damaged child.  All this is how her children remember her.

The sleeping baby

On both these photos I look well but am not just asleep: this baby looks exhausted!  I can only wonder whether this was the truth or whether it just showed my parents’ lack of (or disinterest in) photographic skill!

To me these photos reflect sadness.  Under all those warm clothes was a scarred little body which reminded them every time my parents bathed or changed me of what they and I had just endured.  Scar belly01cBy the time I was allowed home, the incision wound would have healed to the point that the scabs were crispy crusty and starting to fall off.  But the wound had been sewn up with heavy and deep stitches to prevent it rupturing as I cried and strained, and in case there was more vomiting (as there often is after this operation).  These sutures would have been only recently removed, leaving longish wounds with dried blood where the threads had cut through the tender young skin.  Although the photo I have posted here is of an adult male it accurately conveys what my dear Mum had to confront many times each day.

But this violence and ugliness had also given me life – in fact one that would enjoy great length and blessing!  We can also be grateful that all wounds soon get past their unsightly worst, and most people’s scars soon fade: after a year or two the damaged tissue has changed into white or pale-pink kanji markings.  Despite this, the unevenness and lumps often remain and the incision line, especially in babies, can become disfiguringly sunken.  My scar is sometimes hardly noticeable but it can also look like hollowed pockmarks left by a shotgun blast.

As I have mentioned elsewhere, my mother seems to have struggled with how best to help her damaged son but did this in ways I have always regretted.  She stonewalled and procrastinated, promising to explain “sometime” but talking to friends within my hearing, she made a variety of clothes that sometimes framed and sometimes hid my scar, and she embroidered words based on the word “pylorus”… Clearly, she had been deeply affected by the pyloric stenosis of her first child, the hospital stay that followed, and the 1940s scar that became a kind of sacrament (or is it a “scar-ament”?).

Strangely for some, unsurprisingly to me, my gnarled midriff was something I hated and hid from public sight for many years.  Although I now feel pride in being a survivor and belong to a community of people who share my experience and understand my emotions, every time I see my body I am still flooded with mixed emotions.

Sharing some of these feelings and reflecting on my parents’ and my experiences with one of the maladies of infancy, with infant surgery and with being “damaged goods” all help me and have helped countless others among the many readers of this blog.

My pyloric stenosis obsession

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


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

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

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

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

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

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


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

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

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

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

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

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

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

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


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

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

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

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

*     *     *

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

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

Networking after pyloric stenosis (4): Emotional baggage

This post continues a series in which people who started life with infant pyloric stenosis (“PS”) and were usually left with a very gnarly or sunken surgical scar tell something of the psychological damage that came with that.  The social pages of Facebook include at least seven Groups of such people and the comments below are taken from these pages.

In their most formative years many PS survivors didn’t understand the reason for the surgical scar on their belly: their parents were perhaps embarrassed or reluctant to explain it because of their own inner pain over those pages of their life story.

Even during our honeymoon this pose shows how careful I was about showing my belly to the world.

Even during our honeymoon this pose shows how careful I was about showing my belly to the world.

When PS survivors feel shame about their scar, it’s typically because their personality is not extroverted and confident, and/or because they were not helped from an early age to understand the story of their PS and to “own” and wear their scar with pride and gratitude. Let’s face it, not many of like to be “really different”, and when we’re not helped to understand and appreciate the issues involved…

Here is the record of some of the emotional struggles PS’ers feel or have felt.

T B – c. 1990
I have gone through stages where I have become depressed over the scar left, however I think I am beginning to accept it more.  I’m an avid fitness enthusiast and weightlifter.  In saying this, I try to stay in shape.  However I still feel really uncomfortable taking my shirt off in public or around people I don’t know… the internet has made it easier.  It shows that there are “others” out there… I feel the scar is something I should be proud of instead of ashamed.

D C-S  1974
My ops were both in 1974, left me with a big zip scar down my front from sternum to belly button.  Wouldn’t be without it, but it has left me affected mentally and has left me with a variety of digestive tract issues.

Panama man

When infant surgery leaves your body looking like this man’s, only the very self-confident would ever feel at all comfortable

K D 1949
Gosh all your scars still look way better than mine.  I am 64, an old girl, and had it done at 12 weeks.  Huge vertical with big dots horizontally.  I’m in Australia and it is amazing to see how far surgery has advanced.  Have been embarrassed by my scar all my life and never wore a bikini.

J H 1962
I struggled with my scar for years… especially in school, sports, etc.  Always was embarrassed to take my shirt off, kept my arms folded, etc.  Now I’m proud of it and love to show it.
Growing up I used to be so embarrassed.  It’s something I had trouble overcoming… but finally did.

FV 1945
Because I had my op long ago when lots of the issues around it were pretty basic, I’ve had some emotional baggage, probably mild ptsd, shame and obsession for many years, now still in some ways an inordinate interest, although working on the issues and age have helped me heal inwardly.  Suspect there’s also some damage from the hunger and dehydration, as I lag behind all my 4 sibs in some areas.  But I’m glad I lived and don’t have the problems some have, esp. adhesions and serious bowel issues.

WW 1952
I’m 57 and had PS surgery at 3 weeks old and my mother told me that I never crawled.  I would only pull myself along on my butt.  (This behavior, I think, is very connected to the surgery.)  I did walk late, as I recall her saying.  For me, I think transitions have always been hard.  Safety is a big issue.  All my life, I’ve been a late bloomer.  For me, it’s definitely connected to the surgery.  I lost some confidence early on and doubted the power of my body.

parent-talking-to-childIt is noteworthy that most of these kinds of Comments are from people who had their PS surgery many years ago, when the surgical techniques were fairly crude and not cosmetically sensitive, hospital care was rough and ready, and parents did not know as much about child psych as we do today.  These Facebook comments are typical of other forum sites I have read.

However, the one comment (the first one) that is from a younger PS survivor shows that “emotional” baggage after PS surgery is not simply related to whether the surgery and scar were relatively recent or not. Again, many of us just hate being different.

These Comments also show that emotional, psychological and PTSD consequences can show up in different ways.

This series based on Facebook common interest sites also bears out that the medical alternative to treating PS surgically should be considered in every case – as it is in several developed countries.  This option like surgery is not always trouble-free, but will avoid most if not all the serious complaints and problems which fill the PS pages of the web’s forum sites.

During the 3 months after this post was written my wife and I were travelling, visiting family and friends and holidaying in the U.K. and Europe. My Facebook page records some of this wonderful and special time (accessible to Facebookers who “Friend” me).

This series of posts was continued soon after my return home.

Networking after pyloric stenosis (2): blockages and pain

The previous post looked at some of the benefits of the internet age enabling us to network with people worldwide about issues of common interest.  I gave links to some of the websites I have found very useful for people with infant pyloric stenosis (“PS”), whether they be parents or survivors now in their adult years.

This post starts a series in which we listen to what people from all over have shared about the hassles they have experienced before and more often after PS surgery.  True, we can be grateful that the problems mentioned seem to occur to only a minority, and there is probably a “silent majority” who find they can easily put their PS nightmare behind them and “move on”, never or hardly ever thinking about it again.

However, that does not make the problems about which so many take the trouble to write any less real and troublesome.  The medical world’s ignorance about PS is widespread and reprehensible, as the many online forums and this blog have often demonstrated and stated – but in 17 years of following this subject area I have never yet seen a single research report on the frequent and serious grievances about shoddy diagnosis of this rather common condition!

The fact that ongoing problems occur as often as they do after PS flies in the face of the bland assurance of too many of those doctors who know anything much about PS: the common mantra is that “PS is quickly and easily fixed, with only rare post-operative problems and no long-term hazards”.  Ahem, what was that again?

Adhesions can form without an obvious cause, but usually result from damage to tissue and organs caused by surgery, such as those shown in this diagram caused by an appendectomy.

Adhesions can form without an obvious cause, but usually result from damage to tissue and organs caused by surgery, such as those shown in this diagram caused by an appendectomy.

In this and the following posts I pass on some of the comments from six PS survivor networks on Facebook.  This selection of comments is about adhesions and related conditions following PS surgery.  This blog has devoted several posts to the post-operative adhesions which can cause bowel blockages and pain: readers can find these posts by using the Categories box near the top right of this page.

KD was born in 1949 and wrote:
I am a 64 year old survivor.  Have over the past 2 years had a lot of problems with partial small bowel obstructions that are apparently caused by adhesions very probably from my PS surgery all those years ago.  I am also lactose intolerant and have IBS, and often have pains at the top of my scar!  I have bowel adhesions caused by scar tissue my surgeons say from that P S op all those years ago… in between i am ok, plus years of having pain at the scar site,
Electric Heating pads, hot baths and lots of either swimming or exercise are really good to keep things moving.  Strong pain killers are a whole other issue, and you have problems from them too, so I try and avoid them but sometimes u have to.  Every time you have abdominal surgery you run the risks of more adhesions so be careful about that too.  I get small bowel obstructions with my scar tissue, not nice.
I had it done at 12 weeks.  Huge vertical with big dots horizontally…  It is amazing to see how far surgery has advanced.  Have been embarrassed by my scar all my life and never wore a bikini.  I have suffered so many digestive problems.
now I have partial bowel obstructions caused by adhesions which surgeons say probably came from my ps op all those years ago, as I haven’t had any other abdo surgery.  I still feel pain at the top of the scar from time to time.  Weird!!

TF, 1977
I had surgery for this in 1977.  I have a ton of scar tissue and adhesions everywhere because of it.  Also my small intestines are stuck to my abdominal wall because of all this.  Been painful for the last year, so I’m going to have to have surgery soon to fix all this.  Just have been going through all the tests to be sure that is the problem and ruling anything else out.

LH, 1980
I have an almost 5 inch scar that has is bulky and is such a mass that it has attached itself to my diaphragm.  I am going to a general surgeon in a couple of weeks to get it checked out and possibly reduced a bit.
I was just diagnosed anemic and put on iron pills after lots of testing and a colonoscopy.  It’s great to know that the iron might be a part of the ps stuff.
Mine bothers me when I exercise because I breathe heavily, so my diaphragm moves a lot then it stretches the scar tissue and tears.  Once I have been exercising for a while as long as I keep it up regularly it doesn’t shrink again and I’m good.  But if I stop it shrinks and hurts like hell when I start up exercising again.
How do I know it’s attached?  I was just told by a doctor years ago… I explained the pain and after an ultrasound they confirmed it.

JM, 1986
I get bad pains like a stitch but worse.

PM, 1969
I am having some tenderness at the surgery site and acid issues.  Wondering about scar tissue?  Just had an endoscopy to try and figure things out.  Anyone else have issues many years later?

AB, 1992
I have acid reflux and gastritis as well, they are side effects from the surgery.
I had PS as well and surgery when I was a month old.  I’ve always had pain with my scar too.  It gets hard at time and sinks in very nasty.  I’ve had ultrasound scans, even cat scans, mri scans and xrays.  My doctor told me that my scar didn’t heal properly internally and as a result I have scar fibers extending to my ribs and even to my liver.  All the doctors say that I have nothing to worry about because in time they will tear on their own.
I have a hard time bouncing back [after a stomach bug attack].  Leaves me weak for weeks… sometimes months.  My doctor says it’s because my stomach went through such a major change when I was a baby.

RR, 1987
I had pyloric stenosis surgery at 10 days old.  I went to the E.R yesterday because I was having bad pain in my rib / back like someone had punched me a few times.  I was given an ultrasound scan but nothing was found.  I was told it could be a muscle strain or scar tissue issue from my surgery… Never did I think of my surgery from that long ago: I had always overlooked it.

Next time:  poor diagnostic work

Networking about infant pyloric stenosis (1): links

For those who have had surgery for infant pyloric stenosis (“PS”) the online social media and discussion forums have been a Godsend.

Being a 1945 PS baby, for most of my life I was able to compare notes with only a very few others who share my PS-related joys and sorrows.  But worldwide networking has arrived and flourished since the advent of the internet in the 1990s.

Parents now compare notes on their baby’s PS, the surgery, and what followed.  Many regard it as the most traumatic experience they’ve ever had, too often made worse by the lack of awareness, sloppy diagnostic work, and even arrogance of their doctor.  Many tell their tale or join a Facebook Group hoping to increase the general awareness of PS, the most common condition of infancy which is usually dealt with surgically.

blog-writing1Survivors are typically keen to break out of their sense of aloneness.  We can now compare our feelings over the surgery and scar: we had no say and have no memory of our first crisis, but we can now meet others with the gnarly or deeply sunken scar which most of us hated, especially in our earlier years.

Many PS survivors also want to learn about a list of ongoing problems which some have and which seem to be related to their stomach operation, although doctors don’t agree or want to know about this.  After all, the paediatrician and the surgeon assured our parents that the operation was easy, quick, almost always immediately successful, and that there are no long-term problems after PS and the surgery.  “If only!”

Facebook is the most accessible and popular address and has at least six large and small PS Groups and they are actively used by both parents and PSers.  Unlike web forum sites, Facebook Groups can only be accessed by registered users; they just need to type “pyloric stenosis” into the Search box to get a list of Groups.

Forum sites like Experience Project, MedHelp, Patient UK, and Topix each have one or more discussion groups for PSers.  These four links are to each site’s most popular discussion on PS matters, and a search there will usually give you links to other discussions on that site.

Expectant and recent mothers share their experiences, concerns and questions on specialist sites including BabyCenter (in the USA), BabyCentre (in the UK), and also in other countries.

Readers interested in any of the PS-related issues are to be encouraged to “visit” some of these online locations.  Consider sharing your story and help increase the public and medical world’s rather too common ignorance of PS!

In the next few posts I want to pass on some samples of the important information that is shared on the pages of some of Facebook’s PS Groups.