Tag Archives: pyloric stenosis

Can Pyloric Stenosis come with long-term effects?

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

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

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

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

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

So… what is beyond doubt?

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

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

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

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

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

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

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

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

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

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

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

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Why your doctor may delay diagnosing Pyloric Stenosis

A member / friend in Facebook’s Pyloric Stenosis (“PS”) network messaged me:

After having a baby with PS I find it very difficult to understand why it takes so long for the doctors or specialist to diagnose it.  Just like to know your thoughts.  We were obviously extremely lucky.

Several other common problems around infant PS were raised and we’ll seek to address each of these in the following posts.

If like this parent your baby’s (or your) PS was recognised and treated promptly without ongoing problems, you are indeed lucky and will feel very grateful to all concerned.

M820/0092But if you or your parents suffered to the extent of being traumatised by PS, you join a sizeable club!  Social forum sites such as Facebook, BabyCenter (or –Centre), MedHelp, and Topix have allowed many thousands of parents and PSers to voice their unhappy experience of medical matters related to PS.

Well may we all wonder about the actual number of people with the problems on this parent’s mind.  For readers who are wondering, What are the problems? please read on… Continue reading

Three responses to infant surgery

Infant surgery does different things to different people.

This post introduces readers to three men whose infant surgery recently prompted them to go public, each in his own way.

yay1Dave Outred went online to express his joy and gratitude for his full and satisfying life, apparently unaffected by the rather messy start to life he had.  After developing pyloric stenosis (“PS”), he was operated on twice in a London hospital in 1955 to remedy this rather common condition when he was about 6 weeks old: when it became clear that the first “procedure” had not dealt with his stomach blockage, it was repeated a day or two later, leaving him with two rather large and untidy scars.

But, he wrote on Facebook (to a “closed” Group) –

I say, be proud of your scars because you are a survivor!  I have had a great life: played sports for my town as a school boy, enjoyed camping and an outdoor life with the scouts, been married twice [currently 31 years], followed my football [soccer] team through good years and bad, semi-retired at 48 after many years of working 6 and 7 day weeks.  Lots of friends and a full life.  Recovery from P.S. is the start of a life you may never have had.

ButchBee02aJay Jacobs’ infant surgery was to deal with volvulus, a twisting of the bowels that like PS blocks the passage of food but can also quickly cut off the blood supply, causing gangrene and death of the affected intestines.  Perhaps because he was not expected to live, perhaps because cosmetic concerns rated rather lowly in 1957, perhaps because of his earlier weight problem, he has also been left with a very large and sunken scar.

Jay Jacobs found it harder than Dave Outred to feel accepting and confident about his disfiguring scar and count his blessings… until he found his niche.  Jay Jacobs always had a weight problem but in his later adult years he succeeded in beating this: he found diets and fitness programs that worked for him, participated in the Biggest Loser program on TV, and developed and promoted his discoveries, weight-loss and new-found wellness to become a successful entrepreneur!

Quite likely because of his accomplishments, he was also persuaded to rise above his negativity about his abdominal scar.  He appeared “topless” on TV and online, and wrote about his former “shame” and new-found confidence about his torso and story.

Henry Fox like Dave Outred also had PS and early surgery to remedy it.

Genes baby1It left him with a lifelong passion for the importance of medical research.  Many PSers realise that up to about a century ago, the diagnosis of infant PS was almost always a death sentence: the surgical remedies then on offer were so crude and horrific and so rarely successful that most parents preferred to see their little one simply expire.

Henry Fox knew this and also that there are still many conditions of infancy that although less common than PS need research funds and workers.  He wrote –

Owing to the type of research now carried out by Action Medical Research, I was able to undergo a small operation to rectify this and am now able to make the most of my ability to digest properly…!
Since then, Action Medical Research together with its most famous sponsor, Paddington Bear, have stayed very close to my heart.  I spent several days as a young child attending Action Medical Research’s Paddington Bear tea parties, over-indulging in a fair few marmalade sandwiches to help raise funds for their life-saving research!!  This association has stayed with me and it is rumoured that (aged 27) I may still possess a Paddington Bear duvet cover.

 Henry is seeking sponsorship for his running in the 2016 London Marathon (24 miles or 40 km on 24 April) to raise funds for medical research.

Nerdy MD2For many years now I have been reading and writing about the many issues around infant PS, and seeking greater recognition of the turbulence that affects a fair number of those affected by this rather common ailment.

I have been intrigued by the unity among parents affected by PS: those who write report as one that it was their most traumatic experience ever – and that all too often it left them feeling cheated in one way or another.

On the other hand, those who themselves have had PS respond and reflect on it in many different ways, and the reports above are typical but only samples of many very different responses.

Who do you think you are?

Recently I watched the 100th program of the popular TV series, Who do you think you are?

ponderAppropriately, it was a review of some of the most notable of the 100 stories to date.  Two utterly poignant segments joined “survivors” ardent about unearthing the fate of their ancestors and family members.  An Anglo-African woman hoped to find some mention of her ancestors who had laboured as African slaves in Antigua.  Another woman’s relatives were among the Jews trapped in Belorussia during the Holocaust: it was known that 2 girls in her family had been killed horrifically, literally by the hands of German soldiers.

I recalled the absolute apprehension and determination of the children of adoptive parents wanting to find their birth parents.

Some of the Who do you think you are? programs I have found to be rather “ho-hum” – interesting but somewhat lacking in power and passion.  But not so the heart-rending search for what exactly had happened in utter blackness long ago and faraway in Antigua and Belorussia.  Sometimes despite deep sadness or horror we just need to discover what we can find out.  We feel a deeply personal and profound bond with imprecise stories about our kith and kin, with the general facts about certain people in other times and places.

My own search has certainly been nothing as emotional as that of the two women with links to Antigua and Belorussia, but it’s been passionate just the same.

People02But it has also reminded me that my early PS, surgery, hospitalization and parenting have affected me more than many other infant PS survivors.  Most seem never to even think about their PS episode, some can’t identify or even care or want to know about “that scar”.  And others recoil at the mention of what their first weeks were like for them and their parents – like the Facebooker who asked me to delete a photo depicting the starvation that some babies suffer before they are properly diagnosed and treated.  We each manage our life stories in our own way.

My parents were people of bygone times who kept from me the details of the infant surgery I had when just 10 days old.  Before I was 6 years old, I became desperate to know what had created what I later learnt was a surgical scar, running down the middle of my young body, and how I should answer the inevitable questions of the curious.

During my growing years I picked up enough from conversations and books to understand the essence and effects of surgical work, and what pyloric stenosis was.  It didn’t take that long to learn how to avoid the inquisitive queries: I avoided most by covering up and lied away the rest.  Meanwhile I learnt what I could do to remove what I believed was a length of white string caught under my skin… the answer was of course: nothing.  Sure signs of inadequate parenting, an insecure child, an introspective nature, and (I discovered later) signs of PTSD and OCD.

A busy working and family life, plus the now understandable reticence of the then available information sources meant that between the ages of 20 and 60 I learnt little more.  But “the need to know” was kept alive by my continuing episodes of feeling embarrassed, obsessed, and self-harming because of my scar and story.

Q mark2The advent of the internet with its free, rich and growing flow of information and its potential for community-building was a major breakthrough and gift for me.  It gave me many details which I had never heard or fully understood, and which I quickly recognized as some of the missing pieces of my puzzle.

Amongst much else I learnt –

  • most of what I now know about infant PS – and that there is an adult form of this condition;
  • how infant surgery was usually done before 1987 (and still is in the case of many circumcisions);
  • that the danger of infection before the 1960s had a major impact on hospital protocols and procedures – with great effects on all concerned;
  • that trauma (another “hush-hush” subject at the time) affected many of the babies and adults of those times;
  • that PS and its surgical repair leave many with life-long problems, for some minor but for others very disruptive;
  • that many medical workers were and remain ill-equipped to understand and fully help those who seek their assistance;
  • that healing occurs in many ways and that we each seek or find our individual path; and
  • that many of my approximate contemporaries who have had early surgery and are willing to network report psychological and related difficulties very similar to mine.
  • that although my parents both died in the early 1990s without ever engaging with me about what were some obvious “issues”, I have discovered that the very little they did tell me and the main import of what I have learnt since are a perfect match!
  • that I am part of a large number of infant surgery survivors who share my passion to connect our past and present: I receive a steady stream or comments from readers who value my sharing, explaining and honesty about what I have learnt.

woman at PCI have enjoyed years of interaction with countless others who had older-times infant surgery and were able and willing to share their stories.  This blog has triggered many of these passing contacts – and a few deep and revealing friendships.  Forum and social networking sites such as Facebook, Experience Project, MedHelp, Patient, and Topix have been valuable also.  Facebook alone has more than a dozen PS Support Groups (although only a few see significant traffic) with over 700 members!

Something deeply personal which I still don’t quite understand but sense I should is a powerful motivator.  Whilst appreciating and respecting those whose problems are much larger than mine, I too remain both passionate and thankful about what I have learnt about “my story” which my parents kept from me.

I am now much better to join the dots between my past and present!

Pyloric stenosis: treasure and then trauma

How could the birth of a new life, the time of life’s greatest possible personal triumph, also come to be remembered as the greatest trauma that the same person has ever endured?

baby worriesThe birth and unexpected death of a child must surely be the most poignant possible example of that.

A close second must be the birth of a child who is damaged or imperfect in some other way. But it is surely beyond belief that the tragedy of finding that this brand new gift is damaged is sometimes made unimaginably deeper when the people we look to for advice and help are unsympathetic and dismissive of our concern and pain.

Surviving infant surgery (the theme of this blog) sometimes means for new parents, “surviving the hard and closed minds of the medical world”.

There are several Facebook Groups that offer support to those affected by infant surgery, especially infant pyloric stenosis.  PS is the condition responsible for the highest number of life-saving surgeries (operations) on babies. The great majority of “threads” (complaints, discussions and advice) on these Facebook sites relate to the unnecessarily long weeks before diagnosis, and to being treated very poorly by doctors.

Several mothers have posted about their unexpected and deeply frustrating experiences on their blog.  Jenn Cahill is a British mother whose traumatic experience in getting recognition and treatment for her son’s PS helped her to start blogging about this and other challenges of pregnancy and new motherhood.

girl-w-laptop01In a recent post, Pyloric stenosis, Jenn put on record her mother’s battle to have her (Jenn’s) PS taken seriously back in 1993, only to happen again a generation later!  Jenn post chronicles the almost unbelievable story of her 2-3 week struggle in 2015 with dismissive medical staff before her son’s PS was taken seriously; by then his vital signs had deteriorated to the extent that it took several days to resuscitate him enough to withstand a relatively simple surgical procedure.

At the same time as she posted her story (early February 2016), Jenn participated in a spirited discussion of this issue on Facebook’s Pyloric Stenosis Support Group.  (Note: this is one of several “closed Groups” dealing with issues around PS, “closed” meaning that Facebook subscribers can find each Group but not read and add their own material unless they join that Group.)

Here is the opening story to a P S Support Group thread – from a US mother, posted on 29 January 2016 –

Hello all, my son and I were struggling with feeding issues/lack of supply, so I had him checked for tongue tie.  As it turned out, he did have posterior tongue tie, and he had his frenulum snipped at 2 weeks.  His first feeding afterward, he threw up a large volume within minutes of each other.  I called our ped in a panic and was told he overfed as he was finally able to suck effectively.
This began 7 weeks of misdiagnosis hell.  He continued to throw up 1-5 times a day.  Our ped diagnosed him with reflux.  We tried different formulas, and he was put on prevacid.  His vomiting wasn’t projectile, but forceful and huge in volume.  The worst was when he was on enfamil AR – the formula was so thick that it was extremely difficult and painful when he vomited.  I was so scared watching him during these episodes.  We were at the ped nearly every day, getting nowhere.
Vomiting continued, and he was barely gaining weight.  We went to a GI specialist at 4.5 weeks.  At our first appointment, I asked if he could have PS and if we should do an ultrasound.  My concerns were brushed off.  The specialist diagnosed him with a milk protein allergy in addition to reflux – told me this was all normal baby stuff.  My son’s health continued to decline.  For an entire MONTH, we saw this doctor.  I asked at every appointment if he had PS, shouldn’t we do an ultrasound.  I was refused every time.  Finally, at our last appointment I demanded one, which confirmed my son DID IN FACT have a severe case of PS.  She fought his diagnosis all day, ordering the barium swallow test and ANOTHER ultrasound.  Both of which confirmed PS.  He had surgery the next day, after being hooked up to iv’s for 24 hours as he was extremely dehydrated.
He is now 7 months, thriving, healthy, so happy and sweet.  Yet, I can’t get over what we went through.  I can’t forget the pain and stress of it all… can’t stop punishing myself with the what ifs.  I thought I was progressing, but today I had to write a letter of hardship as we’re applying for financial assistance with his many overwhelming medical bills.  I had a total meltdown reliving that time.
Sorry for the long post.  Just looking for support from PS parents.  He is my first baby.

In a later frustrated response –

Made me question my instincts over and over.  Made me feel like an utter failure as a mother.  All the while my son’s health deteriorated with no end in sight.  I’m so glad I finally demanded that ultrasound that day… I can’t imagine how much longer he would have suffered or what would have happened to him.

Another new mother added –

Funny you should post this as I’m up at 3 am reliving our 9 weeks of hell with exactly the same story as yours.  The guilt and anger consume me at these times of night so I decided tonight that I am over the weekend going to make a formal complaint to the hospital as I want to ensure an investigation takes place so it doesn’t happen to someone else as new parents with a very ill newborn.
All I think we can do is console ourselves that we trusted our instincts eventually and we put our trust in the professionals which we should, but unfortunately their duty of care was sub-standard.
I’m glad your little one is now thriving, my little boy is also 7 months and doing really well but it has traumatised me and although it’s faded and I’m sure will more with time, I think these experiences will last with us for a long time.

And another mother wrote –

Thank you for reaching out to me – I’m sorry you also went through this.  It’s so awful.  I swear, I have PTSD.  I suffered major anxiety/panic attacks the first month or so afterward.  I felt okay for a bit, like I’d processed things and then out of nowhere, I’ll have a bad day like today.  It’s also hard not to worry that every little thing is a result of the many weeks of unnecessary vomiting or fear for future health issues.  I filed a complaint against the doctors with the Medical Board… who knows if they will be reprimanded, but at least I tried.  And, wrote scathing yelp and google reviews.  It’s sickening how negligent medical care can be.
Can we keep in touch if we ever need to talk or are having a rough day?  I don’t feel like any family or friends can truly grasp how I feel or what we went through.  The worst is the “just be thankful he’s healthy and thriving now.”  As if I’m not or I don’t know that…

And she added –

Ugh, don’t get me started on insurance.  I feel I’ve wasted half my son’s life on the phone dealing with them.  Pretty much every single nap until the last couple weeks.

And another mother’s story in brief –

My story is exactly the same as yours except I was told reflux by 8 different doctors.  And just treated like an “over anxious new mum”, told to go get some rest!  Had to film my baby having a seizure which he would have every night from the pain and the choking before I could get just one doctor to listen!  I’m still so angry.

There were many more contributions than those included here.  I end this selection with another of Jenn Cahill’s responses –

Had exactly the same story as you with the main difference being I had PS as a newborn!!!  And they still refused to diagnose him despite it being a much stronger risk if your mother has previously had it.  Absolutely ridiculous.
I struggle to have faith in Doctors now as I think they’re trying to just brush me off as a silly mother as they did when he was tiny.
He’s 6 months now and yet I still panic if he throws up a large amount.  And I’m terrified for the future as we are planning a second and I’m so scared we are going to go through it all again.

It needs to be added here that –

  • Scared_Doctordoctors are known to be busy and work long hours, usually covering a wide range of health issues: hardly a situation conducive to a sensitive listening ear;
  • many infant conditions are no doubt recognised quickly and dealt with well;
  • several of the symptoms of PS are not unique to this condition, nor does PS always present the same way:  correct diagnosis is of course essential and often takes some time; and
  • despite doctors being as imperfect as ourselves, the death rate from infant PS has fallen from the majority a century ago to very low today (less than 1%).

Nevertheless, the medical world has some well-recognised problems, including some practitioners having a serious attitude problem and the number and nature of complaints about the way people are dealt with at what should be one of the most beautifully memorable times of their lives.

Reflecting on my 70th

Birthdays and anniversaries are times for celebration, and reaching “three-score years and ten” years is certainly worth a big three cheers! But they are important for reflection as well.

150926-25 sml

Renmark Reunion September 2015

Gratitude to God and to the most important people in my life over these 70 years are features I’d like to be emblematic of me.  I am still surrounded with so many loving and kind people, I have enjoyed wonderful peace and excellent health, and my contribution in several circles is still wanted and apparently appreciated.

Ten days ago Helen and I gathered to celebrate my 70th birthday with our 4 children, their spouses and our 11 beautiful grandchildren.  A wonderful 5 days . . .

October 6th is ten days after my birth-day and  marks the 70th anniversary of the life-saving surgery I had in the Netherlands.  I would not be writing this but for that day in my life!

Together with the country of my birth and background, my weary and expecting parents were struggling to emerge from the ordeal of World War 2.  And then I arrived, their long-awaited first child, but soon clearly defective: scary, uncontrollable and life-endangering vomiting (infant pyloric stenosis – “PS”).  And these were times when medical science was pretty rough and ready by today’s standards and when people didn’t dwell on what they’d rather forget.

Pic 12

Mother with me – October 1945

So October 6th marks what I now realise was the gift of a new and wonderful second start in life, but also the beginning of a life-shaping journey of exploration and discovery – outside of me and within.

Outside, my parents were unwilling or unable to answer my reasonable questions about the 10 cm scar on my belly, and this drove me to look for information elsewhere.  But until the advent of the web, this search yielded only cold textbook medical data about PS and the then 33 year old surgical fix for the condition.  And explanations of my deeper issues were nowhere to be found: there were no pointers to where these might be unearthed and no ways of identifying people who could help me to realise (as I do now) that my pain was by no means wacky.

Book coverWithin, I was tormented with private pain from the dawn of my self-consciousness until recent years.  Even now I am still working to piece my private pain-puzzle together, although the web has given me access to much information, clarification and to networking with fellow-survivors, all of which has enabled me to receive and share much healing.  Since 2012 I have blogged about my journey, and in 2014 a pediatric surgeon friend and I published a small book, in which he explained what many still regard as the elusive cause of PS and I outlined my personal experience of this condition. It so happens (in Australia at least) that October 6 falls in “Mental Health Week” – and my own story has certainly helped me to feel a sense of identity with people challenged by mental health issues.

Time changes things!  The past 70 years have taught us the value of openness in the home, the importance of both listening and speaking for healing, of collaboration in achieving goals, and (by no means least) we have learnt much about trauma.

70 years have also brought huge changes to surgical technique and to holistic care in the hospital and home.  Time seems to have done less to change the unhelpful attitudes of some in the medical profession – but that’s due to human nature being far from perfect.

What do these changes (and their lack in some respects) mean?

120327-07-WgHcThe kind of trauma symptoms I struggled with is rare among more recent PS survivors.  Their surgical scars are sometimes almost indiscernible, usually tidy and very rarely as gnarly.  Affected children’s and their parents’ questions are typically answered much more fully and sympathetically, and the children are helped to understand, “own” and even feel pride about their story.

As I see it, I have discerned this is the growth in myself.  I am indeed a survivor from a bygone era of medical practice and parenting, and my scar is an exhibit of mid-20th century surgery.  I know it’s not socially correct for a cultured older gentleman like me to proudly show off his scar as an 8 year old lad might… but I’m catching up on lost joys and enjoying it!

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

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

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

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

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

The pattern is typically like this:

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

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

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

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

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

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

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