Before I was 10 days old I may well have earned a nickname: “Fountain Fred”. Or, because I was actually born in the Netherlands, “Free de fontein“. I had a stomach blockage, infant pyloric stenosis (“PS”), almost from birth. This meant spectacular projectile vomits of all my mother’s milk, quickly increasing in frequency and power.
Not just the “wet burps”, “baby puking” or “a bit of reflux” that all babies have. Not just a cute spit like the top picture shows, but fire-hose stuff, reaching the wall, soaking unwary parents, and perhaps a sceptical and unsuspecting doctor who has been trying to assure the anxious parents that “all babies vomit”. A big and spectacular surprise for any casual bystander, but totally traumatic for my first-time parents.
This blogsite is about a weird condition that causes several tiny bubs in every 1,000 to vomit violently and uncontrollably, how this condition and infant surgery have affected me and others, and how PS in babies can be recognized more promptly and treated better than they and their parents all-too-often are.
If you’ve experienced any of this, please consider sharing your story too –
* below my story here or
* on the “About” page, or
* under one of this Blog’s posts, or
* on one of Facebook’s busy PS Group pages.
Any comment or contact is most welcome: it may well be therapeutic for the reader with a PS history, and will certainly add to the wider and better awareness of this horrible, all-too-common but hardly known and often poorly diagnosed condition.
On this “page” I give an overview of what PS looks like and how it’s usually treated, as well as something of my story. Sometimes you can click on an image if it’s too small for you to get its message. Many of these images are taken from the web and in the public domain as far as I have been able to check. Although I’m a blogger not receiving any income from my interest, do let me know if (further) acknowledgement or withdrawal of an image is deemed necessary.
This is what pyloric stenosis looks like (the image is from a medical video on YouTube) . . . and I’m told this is a mild vomit. My late parents could never bring themselves to talk about their memories of my sickness… is that any wonder?
Ewww… yuck, Fred!
PS is popularly dubbed “projectile vomitting”: it is so forceful that milk shoots out, often in an arc and for 1, 2, or even 3 metres (and some report, “even 30 feet” (though that’s a bit hard to believe, it’s almost 10 m) and “even to the ceiling”! Whatever, we get the message, and it’s small wonder this unusual condition affects the parents so powerfully that they instinctively know: This is not normal “baby sick”.
In 1945, even grainy black-and-white photos were hardly affordable to my War-weary parents… and in those times people didn’t talk about life’s ugly things, let alone capture them on camera, so this web image of an unusually hapless Py baby keeps reminding me that PS is a truly scary condition that can end a baby’s life within days.
I was born in a small rural “city” (with just a few thousand inhabitants but city status) in the northern Dutch province of Friesland. As happened there in the 1940s, my proud father (as one of the place’s clergy) paid somebody to announce my birth to all the town notables… my parents were clearly very proud and pleased.
Telephones were not yet everywhere, so my Dad sent cryptic telegrams to announce the long-awaited arrival to my grandparents (who lived in faraway Amsterdam and Zeeland).
It is hard to imagine how utterly devastated my parents will have felt when the violence that is PS started just a few days later. Soon it was clear that their firstborn was vomiting himself to exhaustion and death when less than a week old. The forcefulness of PS puking can sometimes cause bleeding in the stomach, create a hernia in the wall of the abdomen, and also damage the young and fast-developing brain.
This set of photos was not me either, but tells me that whenever my stomach performed like this it would have caused some consternation and apprehension. These waves of peristalsis are another clear sign of PS: you can see the stomach muscles trying to push food through the overgrown and blocked pyloric valve at the end of the stomach.
“Pylorus” is Greek for “gate”, and in PS the stomach’s exit gate ring-muscle (A) becomes thickened or hypertrophied (B), thus narrowing (‘stenosing”) and then often blocking the stomach’s exit passage. The full medical name of the condition is “infantile hypertrophic pyloric stenosis”… quite a mouthful that’s usually coded as IHPS, HPS, PS, or just Py. The cause is still only partially understood, and so there are several theories, most of them beyond my ability to understand. It’s possible there are in fact several possible causes – “a perfect storm”.
One theory has been long studied and repeatedly argued: it’s one that is easier to understand and fits not only many of the medical observations of PS but also its characteristic symptoms and behaviour. This theory, that too much acid in the gastric passage combined with an anxious mother over-feeding her sick child, over-stimulates the muscle, has been carefully explained in articles and in 2014 in a small book by the retired Scottish Prof. Ian M Rogers. His research has supported his theory that the prime cause of PS is an unusually high level of the hormone gastrin which stimulates acid release into the stomach.
In 2019 Dr Ian Rogers published an enlarged and updated book of almost 200 pages, Pyloric Stenosis of Infancy: the great Mystery Unravels, available from Amazon Books UK (not obtainable from other Amazon national branches). One of the additions is an overview of the history of the recognition and treatment of infant pyloric stenosis, and the book has an extensive bibliography.
The list of possible culprits that increase gastrin release is lengthy. Several genes are involved in about 20% of PS cases, but other common perpetrators have been shown to include erithromycin (a frequently prescribed antibiotic), maternal stress and anxiety, milk chemistry, Caucasian race, over-feeding, formula feeding, prematurity, sleep position, smoking, and other factors.
Recent reports implicate bottle feeding as a risk factor, and a formula’s chemistry is of course different from breast milk. Some earlier reports have claimed that bottle feeding reduces the risk of PS, perhaps because it makes quantity easier to control. Some statistics say older mothers are at greater risk of having a PS baby, others claim to have found a youthful first birth is more at risk, and yet others say maternal age is not a factor. Some reports have prematurity as a risk factor and others not. In other words, some risk factors seem to be clearly established and others are still debated, even after several hundred years of PS being recognized.
Again, not me! I am thankful that most PS babies don’t get to this awful degree of weight loss, hunger and dehydration. Just look at those arms and the neck. How I wish my Mum and Dad had taken some more photos, journalled, or just talked about what happened to me back in 1945.
The distressing web image below also shows the dangerous malnutrition (hunger) and
dehydration which PS sometimes causes before it is diagnosed and managed.
Sunken fontanelles or the bones making up the baby’s skull (see right) are seen more commonly and are also a real danger sign. This early starvation can cause lifelong damage, especially to some of the brain’s functions. A recently published Australian study of 43 infants with IHPS found that at ages 1 and 3 years they scored significantly lower on four of the five Bayley subsets (cognitive, receptive and expressive language and fine motor) compared to control infants.
Several earlier studies have reported similar findings, and I cannot but link them with the observation that several of my skills in these areas are clearly below those of my parents and four siblings. Despite this, I have lived well for 70+ years: “Fountain Fred” has been a survivor!
Poor diagnostic work is a concern not unrelated to starvation and brain damage. Countless parents have posted to several large social media sites or blogged about how very angry, frustrated and upset they were when doctors (often not just one) stalled in deciding on what had become obvious to them, especially when they themselves had had PS, if it was in the family, and/or after they had done their homework and recognised many or all of the many well-publicised symptoms. Doctors used to go by the usually clear physical signs of PS and (if known) the family history. Only sometimes was an xray called for to establish a suspected diagnosis beyond doubt. Now (again, judging by countless reports) too many doctors delay, belittling parents as jittery or inexperienced new parents, talking about “alternative diagnoses” and waiting until costly imaging technology can be brought into play (ultrasound and xray tests etc) – all in the name of “the scientific approach”. One may suspect that the cashflow of the medical industry and the bogey of litigation for premature diagnosis may also play a part?
Judging by the many reports online, PS babies all-too-often get to a very distressing and extreme state before their PS is diagnosed. There may well be some “unspoken history” in the fact that it was not the family doctor but the midwife who reportedly told my parents that she believed their baby boy had PS. True, there are several possible causes of infant vomitting, but it seems many surgeons will not even try to diagnose PS and so resist ordering tests until the other possible diagnoses are eliminated… by which time the baby may have been damaged and days of deep distress added to the parents’ load.
Because of this, parents who suspect their baby may have PS are well advised to do some important “homework” to help their doctor decide on the correct diagnosis as quickly as possible, and to help press their case if that becomes necessary.
1 Read what’s on the web or in books about infant PS,
2 Keep records of your bub’s doings (in and output, alertness, etc),
3 Use social media to compare notes with parents with a PS experience, and
4 Have your partner or a close friend support you rather than face a doctor alone.
This will empower parents to if necessary confront their doctor or ER staff with hard facts. All parents can become unnecessarily anxious, but usually a mother knows very well when her baby is losing weight and condition, and can sense when this has become serious. There are far too many stories on the web of parents being brushed off with, “Doctor knows best”, “All babies vomit”, or “You’re just a typical over-anxious mother”.
Is it any wonder that there are so many stories on the web of parents despairing of their doctor(s) and taking their dying baby to the local hospital’s Emergency Dept? There, to add insult to injury, it seems to be typical that they are told: “If you had brought your baby in any later, (s)he wouldn’t have made it through the night.”
This workmanlike guy deserves pride of place here: the German Dr Conrad Ramstedt doesn’t look like an eminent surgeon when judged by today’s dress codes, but back in 1911 he discovered and in 1912 (over a century ago now, yay!) he published the simple remedy for projectile vomiting. And … he’d discovered it partly by accident, partly through good observation and thinking. One of my posts is about this (and there are several more about this pioneer’s impact: find them using the Categories or Search box).
Together with millions of others, I owe my life to Dr Conrad Ramstedt and am deeply grateful to him. Without my early op I wouldn’t be here today, let alone writing this!
Another and more distinguished looking photo of Dr Ramstedt. He started his medical career in the pre-World War 1 German Army. From what I have learnt elsewhere, the scar on Dr Ramstedt cheek is likely from the bizarre university entrance rites prevalent in Germany at the time. To gain entry to a student fraternity, students had to duel in pairs to demonstrate their manliness and bravery. Or rather, they would stab at each other at arm’s length, aiming to scar their opponent. The duellers’ body and arms were protected, but they would go through the rest of their life with an ugly facial scar.
“What a man!” But consider: Is what some “indestructible” young people can get up to nowadays any crazier?
Well, the surgical technique launched by Dr Conrad certainly tested the bravery of countless parents and babies, and I wear one of those badges!
This 1950s series shows how the Ramstedt pyloromyotomy for PS was (and often still is) done, by open surgery.
A wave-like stomach contractions (peristalsis)
B projectile vomiting entire feeds (without bile)
C infants restrained and kept warm for surgery (past practice)
D cross-section of the thickened pyloric ring muscle –
E which is split down to the inner lining –
F along the entire pyloric passage –
G and the split muscle is forced to open wide
H the thickened pylorus lengthwise
What these sketches don’t tell us is that giving a general anesthetic to babies was primitive and risky until at least the 1960s, and because of this it was often avoided until the late 1980s. This has had lasting effects (psychological issues incl. PTSD) on some of us who had infant surgery before the 1990s. More about this below.
My PS was remedied in the Netherlands in 1945, and my research tells me that at that time only a very few babies were given full anesthesia. Others received a sniff of ether or nitrous oxide (laughing gas) at the most baby-disturbing stages of the procedure. The heart and lungs of infants under 2 can react dangerously to anesthetic gases, and few doctors had the skill to put babies to sleep safely. Pediatric anesthesia as a special skill developed only late in the 20th centurry. Judging by most reports of the time from the Netherlands but also Britain and North America, I was more likely tied down, perhaps given some local anesthetic injected around the incision site, and perhaps a sugar cube to keep me distracted and quiet (or try to?). The above illustration shows the tiny patient strapped down and wrapped up tightly to stop it straining, to keep it warm, and to help minimize surgical shock.
Some babies not given a general or light anesthetic were intubated anyway. They were given a paralysing drug (curare) to keep them from screaming and writhing with the pain of the surgery and had a breathing tube pushed down their throat to keep them breathing. Of course my mind doesn’t remember how my operation was managed. But as for my body (or “pre-verbal”) memory… who knows? More about this below.
Pyloromyotomy (splitting the pyloric muscle) has become the favourite operation of many surgeons: it is simple, quick, doesn’t remove anything, and is usually almost immediately and obviously effective, allowing the stomach to pass milk on to the next part of the gut (the duodenum or first part of the small intestine). Just a very few hours after the surgery the baby is able to take and keep down some milk – and fear-struck parents are instantly transformed into mightily relieved parents and the surgeon get the hugs and kudos!
In the past surgeons were trained to disregard the clear signs of great distress during infant surgery, as still happens today with some or many circumcisions. When only a very few surgeons in large hospitals had the skill to give a baby a safe general anesthetic, the rationale was, “At least we’re saving this baby’s life… the parents won’t know or even suspect the details (nor would they want to!)… but they are always grateful to have their baby back alive and repaired, and no doubt one day their little one will be a healthy and thankful survivor too!”
Specialist pediatric anesthesia started its development only in the late 1940s, and its spread and use grew only very slowly. Meanwhile it was convenient and generally taught and believed that babies don’t remember pain and (anyway) are not affected by it – until a 1987 study by Dr K J S Anand showed conclusively that this is not so.
And so it has only been over the past 30 or so years that it has become almost standard practice that all under 2 year olds are given a general anesthetic for any surgical procedure, and local pain control is often included for so-called “minor procedures” such as circumcision.
My op was done just like the above drawings show. A vertical incision (in the midline between the navel and sternum, or to the right of midline) was the standard for PS surgery until the oblique (or Kocher) or subcostal incision (angled under the right ribs), and the transverse (straight across) incision were promoted (starting with the USA in the 1930s), and became the most commonly used for many years. A small incision around or in the navel was introduced in 1986 and has proved popular and far less disfiguring. Since the turn of the century, minimal access surgery (MAS) has been gradually introduced for many kinds of first adult and then infant surgery. MAS for a pyloromyotomy gives access to the pylorus via three puncture wounds and instrument probes – and now sometimes just one pathway through the umbilicus. Although MAS has developed and grown in use since 1990, “open surgery” is still used in about 50% of PS cases – sometimes if the pylorus is found to be very large, but it seems mostly by older surgeons too busy or insensitive to adapt to current expectations which may require learning some new and more considerate skills.
There have been many studies of the pros and cons of open vs MAS PS surgery, and the several techniques all remain alive and well. MAS comes with a longer learning curve and slightly more frequent complications, but less post-operative pain, medication, and hospital time, so that the benefits and disadvantages are about equal. The Tan-Bianchi umbilical access similarly has several advantages and disadvantages. And so the advocates of each surgical technique continue to give passionate weight to their preference!
All surgery happens against a background of professional disagreements and medical hazards. Finding the drawing above here prompted me to discover the buried scar from the transverse (or cross-cut) under my vertical scar (illustrations 2 & 4 above here).
Some surgeons believe (and others reject this) that two cuts at right angles reduce the risk of the wound rupturing when the baby flexes or cries while healing; this seems to some (only) to be a hazard with the vertical incisions. The transverse incisions are claimed to reduce the risk of wound rupture although the published statistics do not reflect this.
Another internet drawing of what happens in a pyloromyotomy, the medical term for PS surgery. The thickened muscle band around the stomach outlet (left pic) has become 1-2 cm long, whitish, and very hard (typically like cartilage), blocking the passage of everything. It is slit and then prised open length-wise down to the mucosa, the inner lining of the passage, but keeping this passage intact is of course vital: any leak must be recognized and repaired before the wound’s closure. There are several graphic videos showing a pyloromyotomy on YouTube: the one by Dr Wealthy shows the simplicity of the procedure as well as the care that has to be taken to avoid collateral damage that can quickly lead to death.
Another photo from the web – this carefully placed little gash through the overgrown muscle is what saves almost all PS babies today from a slow death by dehydration, starvation, and organ failure. This is the gist of the PS fix – the enlarged pylorus muscle has been split open wide but the lining of the gastric passage is left intact. Bring on the food! Yay!
Like many PS babies I flourished after my op! My stressed-out Mother’s milk could get through at last. A simple but effective fix. Just look at how Fountain Fred became Flourishing Fred in the 3rd pikkie below here.
My parents dumped any records of my PS story (grrrr), but I remember them having a weight chart which looked very much like this one, with a steep dip at 10 days (not 2 months as shown here) – followed by a rapid rise. Whooppee! My pylorus had learnt a severe lesson: it seems it was so keen to avoid further punishment that in all my subsequent days it obligingly let my intake pass through very quickly – which has allowed me to eat as much as I like without a weight problem. How good is that!
A bit more about my parents and me. This is one of my first photos (and it’s very basic) of Mum with me. I was born just after the War ended; Mum and Dad had endured a 7 year engagement due first to the Depression and then the WW2 German occupation of their country. Then, 10 days after my arrival (and it seems after some troubling and damaging delay, as mentioned earlier) they had to hand their firstborn over for what by today’s standards was rough and ready surgery to remedy my uncontrollable vomiting.
This was followed by a time of quarantined separation in hospital because of the danger of infection (2-3 weeks was the norm): the first antibiotic (penicillin) had been developed by Drs Fleming and Florey in 1941 and became available only in 1944 and then only to help WW2 troops. It was not until the needs of the military had eased in 1946 that infection control became a reality in civilian hospitals. So, every day Ma had to travel 32 km (20 miles) to the nearest city hospital (in Leeuwarden) by steam train to deliver some more breast milk for me. These must have been fun times for Mum and Dad. Surgery and hospital care were certainly rugged and rudimentary in the 1940s when compared with today. Only in recent years have I put the pieces together to understand how they refused to talk about any of this.
But here’s the good news: I survived and flourished. Half a year after my operation (and probably already at half a month) I was looking very healthy, thank you (if still not very happy). This is quite typical: many PS babies quickly make up their weight loss and go to the top of their percentile range.
The next page of my story started in April 1951 – it was my “dawn of consciousness”. I’m now 5½ years old, and here’s another fuzzy old photo. This one shows not a sign yet of the trauma and manic phobia I developed during the year ahead, when I came to fear anyone seeing and asking me about the scar down my middle. I was quite happy to pose for a photo (as many under 6’s do) happily flaunting my PS scar, nicely framed in my case!
Mum had made her (then) 4 kids cute swimsuits in several sizes like the one I’m wearing. They were of a standard design in those austere post-War times – I’ve seen lots of them on photos from that era. To provide vital cover but save on material you can see they typically had a neat window – which in my case nicely framed the top half of my belly scar!
Now here’s the rub… Not only women have self-image issues: some of us guys too take years to stop hating things about our nature and our body that make us feel marked, different, or damaged. My temperament didn’t help; I’m such an earnest, introverted and perfectionist type. By age 6 years (as is common) I had become self-conscious and obsessed about the in-your-face Frankenstein-like little scar that marked the stomach surgery I didn’t remember or choose even though it had saved my life.
What triggered the change?
After my family’s migration to Australia, my parents hosted a stream of newly arrived Dutch settlers while they were looking for a job and a place to live. Our home was a virtual guesthouse, thankfully without any of the terrible events we hear about only now. With 4 children plus guests plus a husband often home very late from his work, my mother often drafted the guests to get her 4 under 6’s through bath-time – which in my case became much dreaded. “Ah! What’s that you’ve got there?” “I don’t know!” “OK, then I’ll ask your mother.”
A little later I would hear a whispered conversation in the kitchen, and fume inwardly over my mother always telling me when I asked, “Oh, you were a bit sick and the doctor did that to make you better.” Or, “I’ll tell you some time later”. Which never happened.
Mum did however sense my inner pain and responded as best she could – knowing what people knew then about parenting and child psychology. She made me a special new swim suit without the window frame but instead a rather unhip even higher waist than her earlier design which my brother and older sister are now wearing. I look very pleased with the new gear, don’t I?
But it only delayed the issues I had to deal with.
At this time I also started school with all of its challenges, and with school the learning of English – and facing other unavoidable situations in which “that thing” became an object of curiosity that I couldn’t deal with. My self-consciousness dawned big-time!
I wish now that my parents had helped me to understand and try to motivate me to “own” my truly life-saving story. Although I didn’t remember any of it, it had clearly started to trouble me – and they certainly noticed that.
Only in recent years have I realized that there is so much reason to be thankful to God, my doctor and my parents that I
– was born in a time and place that allowed me to survive, albeit with an markedly imperfect body and some lasting co-effects,
– will always live with a scar which although eye-catching and gnarled is smallish compared with the scarring, disabilities, and body and/or soul damage which countless others live with, often with great courage,
– am reminded daily of the fact that all of us humans struggle in various ways with our creaturely brokenness,
– feel proud of being marked with what represents a lifesaver and a small but important snippet of surgical history, and
– belong to a worldwide community of people with a PS story to discover, tell, explore and share.
But… not so fast!
During my school years I showed all the signs of PTSD, albeit to a fairly minimal extent and mostly in private. In those times the word “trauma” was hardly heard and the term “PTSD” was yet to be born. Although it was recognized that many soldiers suffered from “shell shock”, everybody was told and forever recited the mantras that “time heals everything”, “you’d better get over it”, and “there’s always somebody who’s worse of than you are!”
Sadly, as we have now learnt, it doesn’t usually work that way. I grew up in a secret world of
– self-obsession (I’m sure I wore out a few mirrors),
– self-injuring (I learnt a lot and am thankful I did myself no great harm),
– re-enacting my operation in a child-games and alone, and
– searching libraries for anything to explain my scar and what caused it.
I discovered that I was fearful of especially doctors but also of anyone I regarded as authority, and increasingly became a rather sullen lonely lad, passive-aggressive, and internalising my anger.
Yet from a young age I loved the coast. Swimming has always been my favourite form of exercise and relaxation, but at the beach and pool in those “carefree” years of childhood and youth I never felt free to relax and enjoy myself except when submerged in the water. Here I am (on the right) hugging the flotation device with my brother and sisters.
Out of the water I would keep my arms tightly folded or tugged my shorts or swimmers up to just under my chest, even higher than this unhip looking football coach. My frustrated Mum kept telling me how ridiculous this looked, but I didn’t really care: I was phobic and nobody could get near helping me about that.
Although I’m a “hot body”, I would never go without a shirt, even at home or on Sydney’s typically hot or steamy summer days.
When people asked what “that” was on my belly, or what my scar was from. I also made such a fool of myself: I denied my belly was unusual, and then pleaded ignorance about what “it” was. I couldn’t even answer the school doctor – although if he’d read the form my parents would have filled in he would have known! As much as I could, I avoided phys ed classes, sports and overnight camps which involved changing or showering in public, and my heart raced whenever I heard any of a short list of words: doctor, hospital, operation, stitches, scar…
During my late teens and years of courtship I knew my old way would no longer hold, but it took me several years (yes, really!) to summon the courage to tell my best friend and future wife about my PS and scar – only to find that they were no big deal to her… I’ve learnt that is typical also! “Chicks dig scars!” And besides that, she told me of a niece who had had the same condition and operation – and as I have discovered, a similar scar too.
But even during our honeymoon this pose shows how careful I was about showing my pockmarked belly to the world. I had survived something that used to kill most babies who had it, but it’s taken me many years to feel as free, proud and grateful to God and my family and friends as I do now.
“Scar shame” is feeling embarrassed by the furtive glances and curious questions many of us PSers get when we aren’t covered up at the beach, gym, changerooms or in front of a camera. It’s avoided by wearing a shirt or top, and failing that by folding our arms or posing strategically. LOL
“Scar shame” doesn’t worry everyone, but I’ve learnt that I am far from alone in having struggled with it for many years. These two web images of PSers make that obvious!
I well remember the horrible hot flushes and racing heart that underlined the state of my inner self whenever I felt “discovered” or “exposed”.
It would be several more decades before I felt I had largely succeeded in putting my scar shame behind me.
So, “get over it” I did!
There is hope for everybody who struggles with “scar shame”.
However, I still feel inner anger when I read surgeons (esp. of the pediatric genre) who dismiss “cosmetic considerations” when defending their established practice of doing open surgery when it’s not the only option.
Despite always being a beanpole and now watching my weight, I’ve added a bit of flab in recent years and my scar has become indented, which is a common look. It’s become clearer that adhesions have also glued the scar to my innerworks. I’m thankful that this has not caused me any further trouble, which is sadly not true for all Py babies as they grow up and go though life.
I’ve learnt a great deal about my PS story and how I’ve reacted to it – but almost all from web-based sources and interactions.
Sadly, my personal story, what only my parents could have told me, will remain an almost total blank. Their lips remained sealed, sadly to their graves. In their times, medical matters and unpleasant stories were usually not talked about: their terse mantra was, “the doctor did that because you were a bit sick.” We would talk about this “later”. In the endless mean time, I should “stop acting in such a silly way” (trying to hide or deny my scar). I wish now I’d had it in me to challenge them about all this before it was too late! But that was not my way.
I am telling all this in some detail to encourage greater awareness of the many aspects of infant surgery, and not only as I experienced it. With countless parents I want PS to have a much higher profile among medical personnel (notably GPs and pediatricians), and among new parents and their supporting family circle. I want there to be no more pediatric surgeons who brush off “cosmetic considerations” as irrelevant to infant (or any other) surgery.
I also want every parent of a PSer to be able to do much more today to help their child to understand, embrace and be able to talk about their story, especially if their growing child struggles to understand and “own” their scar and its genesis.
This photo from a German medical website is very special to me. The father on the left has almost a clone of my scar, and his son has had a laparoscopic PS operation.
This image was posted on a German website to show the progress PS surgery has made since 1980 when a baby’s belly was still routinely slit open and then sewn up like a football with big black threads… without much thought being given to the tiny patient’s self-image and self-confidence in later life.
I have recently learnt that the railway-track-like scar (which I share with the father above here and many other older folk) is the result of a wound being closed with retention sutures. Usually now, such sturdy sutures are buried in the wound, and small staples or buried stitches or even just strong adhesive tape holds the outer skin layer together while the wound heals.
In the past even infant wounds vulnerable to rupturing were closed with sturdy threads taken through the skin and underlying muscle, which were then drawn tight, tied, and then left to cut through the baby’s tender young skin for 10 or more days, leaving large and elongated pockmark scars. This was done as a precaution, especially when the baby’s condition was weak. It would save time, which was just as critical as avoiding rupture when it was not safe to fully anesthetise the baby, and when the infant was conscious and suffering throughout the surgery.
Retention sutures would help to prevent wound rupture if the baby cried and strained during the first post-op weeks. Midline vertical wounds cut through the blood-poor linea alba and are said to be especially prone to rupture. Today when retention sutures are used (almost always for ailing adults) bolsters or tubing (as shown) is used to keep the sutures from cutting through the skin.
Wound rupture is less common today, and retention stitches in a baby are almost always buried in the wound. Stitches closing the skin are usually cleverly buried and leave no visible scars.
Quirkily intriguing to me is that not a few PS scars I have seen, including the German one above and my own, have a little crater somewhere along the incision line: I wonder if a drain was sometimes left in the wound?
In recent years, at least the younger medical community is becoming aware of the importance of doing infant surgery in such ways as will leave the least possible visible damage. Sadly, I have noticed that some “old hands” still ridicule any consideration of cosmetics, and some medical people even promise that the wound will slowly disappear and certainly not grow with the baby. Wishful thinking… false comfort.
However, we can all be grateful for the slowly growing recognition that infant surgery can leave some (or many perhaps) of its patients vulnerable to various psychological and emotional challenges. Yet this awareness seems to be growing very slowly indeed. Interestingly apart from the USA where therapies of many kinds seem to flourish more than anywhere else, the recognition of the potential damage caused by infant surgery without pain control seems to be strongest in the Netherlands – where it all began for me!
As mentioned, during the past 15 years the surgical repair of PS has increasingly been done via 3 2-4 mm laparoscopic probes. And when a surgeon chooses to work through an open incision, the stitches that close the wound are almost always buried to leave a much tidier scar, as this beautifully captured image from the Life Lines blog shows.
Although laparoscopic PS surgery doesn’t leave much damage at first, by school age the probes often leave scars that have become navel-like pits on the abdomen: as someone has commented, “My belly looks as if it’s taken a shrapnel hit”.
Another old discussion centres on whether almost all PS needs to be treated surgically. Reports from several developed but non-English speaking countries show that over 80% of PS babies will actually respond to medical treatment with the drug atropine (or similar) which relaxes the pylorus muscle until the baby’s growth takes its own care of PS. Although medical drug treatment takes a little coaching of the parents and a course of several weeks, it is safe and non-traumatic for both the parents and the baby… and the surgery option can always be taken up if necessary.
One of my blog’s many “messages” is that medical treatment should be the first option offered for all PS babies older than 3 weeks. It will very likely avoid inflicting the trauma of surgery on the parents and their little one. If unsuccessful, surgery remains as a safe second option. In countries with this policy, it is just as safe as the surgeons of the Western world’s preference for the scalpel. In the medical world it is only the brave who dare mention the otherwise well-known observation that in their empire, the surgeon rules!
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