Tag Archives: medical advice

Pyloric stenosis and training better doctors

Some of the things people do are utterly unbelievable, were it not for the fact that we humans all do so many things that range from dim-witted to diabolical.

Ostrich_head_in_sandAustralia is more affected by growing extremes of fire and flood, and yet we have a government that rejects the diagnosis and advice of 95% of the world’s scientists on climate change.

My experience of the long-term effects of a life-threatening stomach blockage which I suffered as a baby (pyloric stenosis or “PS”) has moved me to learn more about it and to publicise what I and countless others are discovering via this blog and on Facebook.

Now consider this: the medical world has finally recognised that someone with academic brilliance does not necessarily become the kind of doctor you and I would like to consult, so for more than 20 years now university medical schools have been adding a personal interview and assessment to their entrance requirements.

Imagine my utter disgust when I recently read that one of Australia’s premier universities decided to turn the clock back and scrap these character and skill assessments from the enrolment procedure!  Admittedly this university is in what is widely regarded as the country’s most uninformed and regressive State.

arrogant doc4The writer told me that “ . . . the University of Queensland had dumped its medical interview altogether, saying that it does not add value beyond academic results and was a poor predictor of academic performance.  Medical schools guard their decisions like state secrets so I am not privy to their data but the report did get me thinking about the kind of doctors we want to create and how we go about selecting them.”

One of the most common and upsetting experiences new parents can have with a “PS” baby relates to the doctors responsible for the initial assessment and care of their little one.  True, some parents go online to thank and praise their doctor and hospital staff, and it may well be that there is a silent majority of parents who don’t comment publicly on their experience.

What is it then about doctors and hospital Emergency Departments that causes so many parents to complain?  In brief, professional ignorance and personal incompetence.

Professional ignorance

Infant Pyloric Stenosis is the most common condition requiring infant surgery – at least in the prevailing awareness of the medical community in most developed countries.  It occurs between 2 and 5 times in every 1000 births.  In other words, not every family includes a PS survivor, but everyone of us knows several people who happen to have had PS!  I personally know more than half a dozen PSers (apart from the hundreds with whom I have networked online).

Professional ignorance 1Yet many parents find their doctor unaware of even the basics of PS which they have picked up from Dr Google or from their family health book.  Parents often complain that their doctor told them that their baby could not have PS if it is female, only a few days old, or not first-born.  Doctors routinely show disdain for parents’ reports of the simple signs of PS, like projectile vomits, significant weight loss, loss of soiled and wet diapers/nappies, abdominal muscles swelling and rippling after feeding and before vomiting, and a history of PS in the family.

Yes, it is true that “all babies sick up” and that serious vomiting can be caused by any of a number of serious as well as routine conditions.  It is also true that PS appears in a variety of ways: the majority of cases (but far from all) appear at between 3 weeks and 3 months old, sometimes PS becomes life threatening within days, and other times it develops for several weeks before it can be well diagnosed.  I was operated on when only 10 days old, and some PSers have reported on Facebook having surgery only days, others at 6 or 7 months after their birth.

However, what really upsets parents is that the above symptoms and facts are so often dismissed, that pleas for diagnostic tests are ignored and that often no attempt is made in the clinic to assess the obviously available symptoms – until the baby’s condition is critical and the parents are desperate.  So many parents are on record as being told (as if they were guilty of some misdeed) that “your baby nearly died before we were able to operate” or “this was the most advanced PS we have seen for a long time”.

Another area of professional ignorance that upsets many parents and survivors is the medical world’s apparently utter ignorance of or denial that PS and its surgery can have both short-term and lasting consequences.  I have posted many times about this and plan to continue to do this.

Personal incompetence

The linked article above relates more directly to the difficulties caused by doctors who lack personal sensitivity, the ability to empathise, show common decency, and have clear ethical values and conflict resolution skills – what we’d surely like to think are basics but are far from generally held.

frustrated01This post will not catalogue the complaints of parents and survivors in this regard, as I have written several posts sampling these; they also come in droves on several online forum sites and are sprinkled through the results of any targeted web search.

It both grieves and angers me that the medical profession is in some part still so unaware of or careless about the distress it can quite unnecessarily and avoidably add to the ordeal that new parents suffer when their newborn becomes seriously ill.

We live in times when many community work personnel and organisations, from social workers and teachers to banks, schools and churches, are being held to account for their laxity and negligence.

Unlike these bodies and professions, the medical world is still held in quite high regard by the general community.  Being the monitors and dispensers of physical life and death and having among the best minds and nest-eggs in the land certainly bring fear and power!  And let’s be fair, like people in every other part of society, many (and I trust most) doctors work hard, selflessly and competently.

However, much of the medical world is all-too-apparently addicted to power of various kinds.  This is why entrance interviews must be valued and maintained as much as entrance scores.

This surely is not a matter of “either … or” but “both … and”.

Advertisements

Pyloric stenosis – surgery or medical therapy? (1)

Several posts on this site have pointed out that doctors and surgeons form a powerful and often an overpowering elite.  And often this is not a problem: in many cases “doctor knows best”.

surgeonHowever, the worldwide web is peppered with angry and frustrated stories from the parents of an infant pyloric stenosis (“PS”) baby who were totally unable to get their family doctor or paediatrician to carefully diagnosis their baby’s problem – even when the family history and/or the symptoms made their little child’s condition very clear.  Often these parents will tell us they gave up on their doctor and went to the local hospital’s accident and emergency department, only to be told their baby was near death.  Such stories are numerous.

This is not good!

A somewhat similar power-problem is all too often evident when parents are told that their baby needs a pyloromyotomy, the standard surgery for PS.  It seems that the alternative to surgery, a course of medical treatment, is very rarely mentioned – and almost never recommended and followed.  Of the many stories which parents have posted about their experience with a PS baby I can only remember one that mentions being told about and using the alternative to surgery.

Altough medical websites do often mention the “medical alternative” to a pyloromyotomy, every information page I have seen still dismisses it.

What is the truth about these two ways of treating PS?

1946-01 FLVI have posted about why many surgeons have made the pyloromyotomy their favourite surgery: it is quick, uncomplicated in the hands of an experienced surgeon, requires only a few days in hospital nowadays, and is often immediately effective.  It’s not hard to imagine the satisfaction and kudos all this gives to a surgeon!  My parents must have loved a photo taken a few months after my op which shows me as a very flourishing bub!  This “over-compensation” seems to be very common: PS babies typically do very well once they can process their food!

Superman MD1There is a second reason why the pyloromyotomy is so strongly loved.  Medical developments have made surgery (in itself) minimally traumatic for a baby.  Pediatric anesthesia and pain relief are now quite standard and sophisticated compared with just 30 years ago.  Before the late 1980s many babies were given no or minimal pain relief, many in especially the US medical world passed on the fiction that “babies don’t feel or remember pain”, and surgery could leave infants and their parents deeply traumatised, some for life.

Besides this, improved surgical equipment and techniques have greatly reduced the scarring and disfiguring effects of surgery, so that many babies who need surgery now are left with scars that are relatively small despite their having grown with the years.  However, I fear that any scarring remains “uncomfortable” for a shy, self-conscious and introspective child or an image-conscious and introspective teenager.

The fact is that most PS surgery is avoidable.  So for me the question remains: why is the medical treatment option with the drug atropine so generally dismissed?

My recent research has uncovered several clues.

In recent months I have found and visited PS websites in the main European languages.  I thought it was interesting that –

  • there are many more such sites in non-English languages than in English; and
  • despite the “medical treatment” option being commonly and successfully used in many countries (incl. Denmark, Germany, India, Japan, Serbia, Taiwan and Turkey) in the earlier 20th century, and widely used throughout Europe and the English-speaking world at that time, most of the documents did not even mention an alternative to surgical treatment.  Almost all the documents seemed to assume that surgery is the only way to treat PS unless a case is so mild that a “watch and wait” strategy can be followed.

There were just two exceptions.  These documents gave data about the medical treatment option (using the muscle relaxant drug atropine sulphate) which I found representative of other reports I have read in recent years.

One was a Powerpoint presentation by the Italian Prof. Antonio Dessanti entitled, Hypertrofic Pyloric Stenosis: Pyloromiotomy versus Conservative Treatment [sic].  He oversaw 22 PS cases treated surgically and 15 by medication, 4 of which eventually needed surgery.  All cases were treated successfully and it was found that the pylorus returned to a normal size 2-3 months after the onset of symptoms.  There was no further comment on this.

Atropine01PLM Lap 53 CO2 off2A Pediatrics International report published online in June 2013 gave more detailed and what I also consider quite representative data.  It was based on a Japanese study of 397 infants treated surgically and 188 treated with atropine, 8 given orally and 180 intravenously, 38 of whom later went to surgery.  The success rate of atropine treatment alone was thus above 80%, and surgery was 100% effective despite almost 3% having severe complications.  The medical treatment needed 13.5 days in hospital and surgery 8 days.  There was no mention of deaths from either course: this again agrees with what I have read in many much earlier reports.

What did surprise me greatly was a recent undated and anonymous report entitled Spezielle Kinderchirurgie (Specialised Infant Surgery) reputed to come from the Surgery Clinic at Hamburg University in Germany.  It dismissed atropine (medical) treatment with the following statistics: it requires 40 days in hospital versus 3-5 for surgical cases, mortality was 5% compared with nil for pyloromyotomy babies, and morbidity (complications) were reported as 17% having atropine intoxication versus 5% for surgical patients (including mucosal perforations, infection, and other setbacks).  These figures would be enough to make any parent sign up for surgery – but they are not at all representative.  I have posted about how medical treatment can be followed on an out-patient basis and with minimal or no mortality and without undue other risks.

Question: why would a web-based document report such and disturbing and totally unrepresentative statistics?

The fourth source I found recently was a German forum site where parents of PS babies could discuss medical versus surgical treatment – and two advised against it.  This is the only such material I have ever come across, but it did give me reason to think!  Here are the comments (in translation), the first from Andrea –

Cedric had projectile vomiting, diagnosed when he was 4 weeks old.  It still annoys me today that we agreed to medical treatment; he still vomits, only sometimes but today even.  My doctor even believes it could be because he had atropine.  My youngest nephew had the operation – without any after-effects.

I would like Andrea to know that continued intermittent vomiting is quite common after PS, whichever way it is dealt with.  “Joey’s Mommy” responded to Andrea –

I can tell you that from all I have experienced with PS I would also prefer surgery for my child to the medical treatment.  The atropine treatment is lengthy, nerve-wracking and often not really effective.  Despite the risks associated with surgery I would choose this course.

I must recognize however, that the number of infants I have experienced having this problem is too small to be really representative.  There would certainly be families who have done well in the long run with medical treatment.  Despite this I feel confirmed in my impression by your portrayal.

My comment on these two posts?  Neither seems well-informed and thus they are unconvincing.

Heredity & environment02The benefits and difficulties that can follow from both surgery and medication to remedy PS are very real from what we can learn.  In the light of the above, I now understand somewhat better the complexity of some medical choices, but none of what I have read and passed on here has been at all conclusive for me. The whole subject should be more thoroughly (and honestly) researched by the medical professions.  And the choices should be more openly and fairly raised, explained and discussed.

Do you agree?  If you were the parent of a baby dying with PS, what would you ask, choose and why?

Why this blog?

A few of the things I have been reflecting on during an otherwise busy week… consider this with me, please –

  1. writer-thumbDuring the past week several people have taken the time to add a Comment to several of my posts to this blogsite.  Some of those who find this blogsite clearly appreciate what they receive here: what I read consistently is: helpful and reassuring information, useful advice, careful writing, kind and balanced judgment.
  2. Some time ago I found an entry on my pet subject, infant pyloric stenosis (“PS”), on an information website, Answers.com.  Because I thought it fell somewhat short of what I would have liked to find and there was an invitation to edit it, I gave it some time.  Since then I have had a steady flow of “Like” messages from this site.
  3. Because I am writing weekly posts on many of the human issues (and some of the medical ones also) around infant surgery and especially PS, I am often surfing the web for new medical reports and personal experience stories.  In doing so I am struck by how often Google offers links to one of the posts on this blogsite.
  4. Recently somebody asked me, Why do you spend so much time and effort writing so much on this “pet topic”?  What expertise do you have to write publicly and offer advice on this subject?

All of the above is of course tremendously encouraging and affirming – but is it all true, and if substantially so, what’s the significance of that?  All of this made me decide to devote a post to this.

  • I had PS surgery at a very young age and have done battle with several deep-seated and mostly private emotional problems through much of my life of 67+ years: I was sure there was a connection but didn’t understand what it might be until I started using the web, which slowly but inexorably enabled me to connect the dots.
  • Another of the benefits of web access was that it enabled me to find and interact with others who had ahd PS or another infant surgery.  I found that whilst many (and probably most) of them claimed they had not had the “several deep-seated emotional problems” with which I had struggled, quite a number had, that these problems had much in common, and that they were as frustrated with their lot as I was.
  • blog-writing1On the web and in the book trade others and I began to discover a small number of professional people who had found and were advocating for the very clear possibility of a link between what can happen before, during or after infant surgery and the development of post-traumatic stress.  Their professional knowledge gave “body” to what we “traumatised survivors” had experienced.
  • The web also revealed to me that most of the medical world was oblivious or in denial about this link: in fact, much of the Western world believed that “babies don’t feel or remember pain” and that PS and infant surgery have no long-term after-effects.
  • From web-based forums (discussion sites) I quickly learnt that not only babies can be traumatised by infant illness, surgery and mother-infant separation.  Almost every parent describing their experience with a sick baby that involved surgery wrote that it was “the worst experience they ever had” and “more traumatic than giving birth”.  Again, reflecting on my own story and hearing those of others, I have recognized that parental trauma, although different, can contribute to the long-term effects of infant surgery on their child’s future emotional health.
  • Web-based forums also made clear to me that there are many, probably a silent majority of parents, who are very grateful for the care, support and healing they received from their doctor, paediatrician, hospital and surgeon.  Sadly however, the great majority of those who write in are scathing of one or more of these.  Ignorance of the symptoms, poor diagnostic work, an aloof, arrogant or condescending manner, dismissiveness of parents’ personal story, experience and careful research: these are the common complaints about the medical community, and they are repeated ad nauseam, unfortunately.
  • I think & blogFinally, I need to get a bit more personal.
    1)  I have been greatly helped towards healing by working on all the above.
    2)  I care about those who have experienced what I have but for whatever reason continue to struggle with poorly understood and unresolved questions and self-doubt.
    3)  I have the interest and time to devote myself to the reading and writing necessary to publicize what I have learnt in both mind and soul.
    4)  Years of training for and work with a wide range of people in a pastoral care context have dovetailed with other aspects of my upbringing, personality and Christian ethos to help me to contribute to the available body of information on PS and infant surgery issues for the benefit of people who have walked on a road the same as or parallel to mine.
    5)  I am often heartened by the response I get from others on these life journeys.
    6)  I have found that my reading, research and writing are personally interesting, clarifying and healing.

Adhesions (7): What helps? What doesn’t?

Adhesions are one of the almost inevitable after-effects of abdominal surgery, including infant surgery such as I had as a small baby for pyloric stenosis.  They are responsible for most of the “visits” to this blogsite.

Pain01Because we are each unique, our bodies deal in unforeseeable and individual ways with the damage done by any invasive event or procedure, whether that be open surgery, the gases and drugs used in laparoscopic surgery, and even trauma-causing events such as falls, traffic accidents and sporting and weapon injuries.  Although adhesions will usually result, they will only seriously trouble some people, and even less people in a way they believe they cannot live with.

Doctors are reluctant to talk about adhesion pain, and will usually not “engage” with these patients.  This is disconcerting and frustrating, but what can they say?  However, it would be better if doctors were able to recommend pain management training or therapy to such patients.

Adhesions are best left alone: the surgical remedy sometimes (and perhaps often?) gives short-term relief but usually makes abdominal discomfort and pain worse in the longer term.  It can only add to the scars and tightness, and set off the development of even more adhesions.

Some readers may find it helpful to read the 6 posts I have already written about adhesions: what they are, how they affect people in general and particularly in pregnancy, and how they are sometimes dealt with.  I have also compiled some of the comments and personal experience stories people have shared via the web.  To find these 6 posts, click on the “Categories” box at the top right of every page, and then on “Adhesions”.

In this post, I want to recommend the best web forum I have found that is devoted to this subject: MedHelp’s Abdominal Adhesions User Group.  By following this links you’ll be able to read what a good selection of people with problem adhesions have experienced, tried, and sometimes found helpful.  Reading through these sites will also encourage those afflicted by adhesions to try the generally agreed on management (notably, a good diet and pain management) and to try some of the less agreed-on recommendations (for example, physiotherapy and herbal medicine).

To illustrate and invite, here are two contributions to the MedHelp site –

“nk56” wrote earlier this month (edited a little) –

I am a 30 year old female who suffers from extreme abdominal adhesions.  I had pyloric stenosis at 5 weeks old, a perforated ulcer at 7, adhesiolysis at 27, and laparoscopic surgery to correct ischemic bowel at 29.  I’ve been through a lot.  When I was 27 I started having extreme excruciating abdominal pain.  I have seen so many doctors and had some many emergency room visits and tests done that I’ve lost count.  I have been falsely diagnosed with differently diseases including pancreatitis because doctors couldn’t figure out what was wrong with me.

What they did know for sure is that my stomach is deformed from surgery and many of my organs are “glued” together.  My adhesiolysis proved that and did nothing to relieve the pain.  What I can gather from experience is that gas passing through my stomach was what was causing the pain.  Every day I would have to fall to the floor and wait for the pain to pass, thinking I might go into shock each time, or end up in the emergency room again.  I was prescribed Norco for the pain, which actually made it worse I think because it messes with your digestion.  After three years of everyday being a living nightmare and seeing countless doctors who had no answers for me I felt helpless and hopeless.  I’m 30 years old and want children and knew that I could never take the risk of getting pregnant and being in that kind of pain.  I could not sleep on my left side or my back and intimacy would often be interrupted by bouts of pain, which caused further depression and stress in my already stressed by pain relationship.  Luckily for me I have the most supportive loving partner in the world, but even the most perfect relationship in the world suffers from chronic pain, everything does, as you well know, and could never truly articulate to someone who hasn’t experienced it.

I had a chance encounter with a friend who told me about systemic enzymes.  In our late twenties enzyme production in our bodies starts to decrease, leaving us more susceptible to inflammation and pain amongst many other things.  Elasticity in our bodies also decreases, which is exactly what happened to me.  I started taking Vitalzym systemic enzymes 2 months ago, 4 capsules 2 times a day and after 1 month of taking them I have not had one single pain attack and can lie on both sides and my back!!!!  A miracle!  Every person who suffers from adhesions must know about systemic enzymes and the role they play in our bodies and at least give a try.  Please, for yourself and your loved ones.  They take a while to work so it’s not a quick fix, but it’s a real fix and they have no side effects and I have no need for opiate pain medicine, it does just fine.  When I am hurting a little because I stupidly drank alcohol, it’s the only thing that will cause pain, probably because my tissue gets so dehydrated.  I have my life back and no fear of becoming pregnant: you can take them during pregnancy, they’re actually beneficial for that too.  Please at least look into it.  Good luck on the journey, and please keep your hope alive, there is light at the end of the tunnel.

“Jaybay” wrote in 2010 –

It’s a shame the Adhesion Society fell apart a few years ago.  For a while it was a great support group, but as with so many such groups, infighting developed and destroyed the whole thing. 

The sad thing about adhesions is that there really isn’t much that can be done about them when they get as bad as you are experiencing.  In some people (like you and me) the stuff grows out of control just as bad as cancer.  Nobody likes to hear a doctor say they are powerless to help, but that’s where I’m at too. 

It took a lot of mental work for me to accept that my life was forever changed because of adhesions.  My pain shrink has actually done more good for me than any of the other docs.  Once I accepted that I wasn’t ever going to be my old active self again, I could finally start building a new life.  I refuse to become “my disease”.  I am still me.  I am not my adhesions. 

Learn to live on liquids.  Make friends with your blender and make protein shakes.  I can’t stand Ensure and similar products, so if I have to live on liquids I’d rather make something I actually enjoy.  I’m sure you know by now what foods cause the most problems, so avoid them and supplement what’s missing with liquids.  Avoid high fiber foods.  They tend to ball up around an obstructed loop of bowel and cause big trouble.  Use water soluble fiber like citrucell instead. 

Relaxation techniques help when the pain spikes.  Most people tense up and hold their breath.  That only makes it worse.  Learn how to control your breathing and keep your muscles relaxed.  It’s not easy but it can be done, and it does help deal with a flare. 

DO move around as much as you can every day, even if it’s only a trip outside around the yard.  That can help loops of bowel move around enough to relax an obstruction.  The more you lay around, the less likely you will ever have any kind of a life at all other than in bed. 

DO stay hydrated.  You don’t want to add additional problems to your already hurting body. 

DO try to find distractions from the pain.  Easier said than done, and it takes real work to do it.  It doesn’t matter what that distraction is – a book, watching a movie, talking on the phone about anything other than your pain – just do it. 

Try to decrease your pain meds a tiny bit and see where your pain levels are at.  Expect pain levels to increase quite a bit for a few days.  It may even take a couple weeks for the receptors in your brain to clear enough to see improvement.  Spikes in pain are common when you reduce pain meds. 

DO find a pain psychologist if you don’t already have one.  Therapy does not mean sitting in a room and griping about your pain for an hour.  A good therapist will have real-world suggestions to help you cope with your pain and the changes that pain has brought to your life. 

Any chronic pain impacts not just the patient, but the patient’s family and friends and areas of life that can be shocking.  “Normal” people honestly have no idea what chronic pain and illness is like, so don’t expect them to get it.  It’s not that they don’t want to understand; they can’t. 

It all boils down to acceptance of your condition;  doing what you can to medically treat the symptoms; and creating a new but meaningful life with what you CAN do.  It’s not easy, but it IS possible.  🙂

Post-operative Infant Pyloric Stenosis?

The websites with information about infant pyloric stenosis (IPS) all assure us that the surgery is simple, effective, and that there are no long-term side effects.  This is normally true from a professional and medical point of view and it often seems to be the case for new parents and the babies concerned.  However, a quick search through the many on-line forums on IPS makes it very clear it is by no means unusual for there to be all kinds of unhappiness and even despair about this “straight-forward” surgery.

In time I’d like to devote a post to each of these, but here is a quick overview…

1                    It is not surprising that abdominal surgery upsets and leaves bruising and collateral damage to the organs and area worked on.  This often causes continued vomiting for some days or longer after the surgery, but should then disappear.  The vomiting should not be as explosive and powerful as the IPS was.  If it is, or continues beyond a few days, it should be urgently referred to the pediatric specialist concerned.  It may be caused by infection or an incomplete division of the pyloric muscle, which could mean repeat surgery.

2             Many parents report continuing mild vomiting, constipation and or reflux.  This is often blamed or diagnosed as gastro-esophageal reflux disease (GERD) or irritable bowel syndrome (IBS) which are both quite common in infants and sometimes continues for several years or even a lifetime.  Ongoing gastro problems may also signal other and more serious gastric conditions, so further specialist consultation is important.  Specialists usually reject any link with IPS but the number of stories available suggest that parents’ questions about linkages may be worth researching.
One mother reported:  My son has had bowel problems ever since his op, he’s now 2.  The docs say that the operation put his bowels in distress and they haven’t developed properly.  He says they will eventually catch up but it will be a slow process.  He has diarrhoea all the time L – his has been ongoing since the op though.

3                    Some IPS survivors report having ongoing problems that suggest an undiagnosed incomplete pyloromyotomy or a redeveloped pyloric stenosis.  From the many reports I have on file, doctors seem inclined to dismiss also these complaints and questions, even though the vomiting can be as sudden and strong as their earlier IPS was.  Here is a sample:
Hi, I am a mother of a child that was diagnosed with pyloric stenosis; she had the surgery when she was 2 weeks old.  She is now 19 years old and is still suffering from it.  When she was in high school she was very athletic and it seemed that during that time her illness seemed to rear its ugly head again and to this day she is still having a lot of trouble.  My baby and I have not found answers on how to get rid of this ugly thing.

4                    Some complain of strange symptoms which are clearly not ongoing or returning IPS, but still uncomfortable and annoying.  This is another well-documented but generally ignored group.  The symptoms include any or many of the following:
sudden violent vomiting associated with particular food intake, illness or other triggers (such as being tickled); muscle twitching or spasms in the stomach region, also associated with illness; adult onset reflux; extreme sensitivity to being touched at the scar region; sensitivity to spicy food; extreme fluctuations of hunger and bloating episodes; unusually fast or slow metabolism, weight gain or inability to gain weight; and frequent mild nausea.  Many of these symptoms are quite likely caused by other factors such as diet, personal constitution, and other illnesses, but because of my own experience and what I read from others I do not find it surprising that many PS survivors are inclined to at least question the claim that “the surgery effectively cures pyloric stenosis, and that without side- or ongoing effects”.

5                    The few research projects I have found on this generally reject any link between infant PS and later gastric nuisances.  Two are Australian studies: a small Adelaide project which compared 6 PS survivors and six “controls” found (a) that there were differences in stomach behaviour but (b) that these were insignificant and confirmed that the body can override such variations.  A Sydney study of 85 children after PS surgery in 1984-91 found few gastric problems, no significant pain, but two had significant vomiting and one colic.

Among the many possible abdominal faults and maladies affecting babies, PS is by far the most common and also one of the most treatable.  I am an IPS survivor who feels deeply grateful for the saving of my life under very trying circumstances in 1945 by what has been called “this elegant and simple operation”.

However, I am dismayed that more than 65 years later, so many recent parents and now-adult patients continue to express frustration, suffering or dismay over many, many facets of the after-story of infant pyloric stenosis.

The medical world may well agree (and no doubt quite rightly so) that many more serious human conditions are more in need of scarce funds for medical research.  However, I am sorry that from what I have found –
> what research is done seems to deal with rather technical or specialist details of IPS and its treatment;
> there seems to be little or no interest in the many ongoing conditions and complaints after treatment for IPS; and
> there are so many continuing complaints about the medical community in regard to its attitude to these ongoing needs.

There is much reason for gratitude – but, it seems clear, also to improve.

Can pyloric stenosis surgery be avoided?

It is always enormously troubling for parents when their worst fears are confirmed and they hear that their infant can only be saved by having surgery.  Then will follow a day or more of additional upsets as their little one is prepared so that it can live to tell the tale of its surgery.

Pyloric stenosis (PS) is by far the most common condition of early infancy that is mostly treated in the operating room.  But before a PS baby can go to surgery, its dehydration and blood chemistry must be corrected, so for a day or so the family will be seeing their recently received pride-and-joy in a hospital cot with an intravenous (IV) line attached to its little body, sometimes inserted into the head, sometimes into a splinted arm.  They may even witness the medical staff toiling and needing more expert help to find a vein that has not “collapsed” or shrunk from the dehydration.  They will witness their newborn child’s plaintive crying at not receiving nourishment.  Sometimes the baby is not even allowed to be held and hugged.

A “Skinnerbox” used in children’s hospitals in the 1940s to protect babies from infectiion.

No wonder my parents could never answer my questions about my p s surgery.  I can only speculate but knowing them, I very strongly suspect they were too traumatised to return to that terrible time, let alone open themselves to my innocent and childly questions.

Is surgery the only way of avoiding the death of a baby with an abdominal blockage?  Unfortunately, many of the more complex conditions of infancy such as gastroschesis, Hirschsprung’s disease, protruding bowels and diaphragmatic hernias can only be dealt with surgically.  But infant pyloric stenosis cases vary greatly in their severity and the more slowly developing and milder cases can be (and in many countries are) corrected with a course of medication.

In my previous post I mentioned that PS is much more likely to be treated surgically in English-speaking countries than elsewhere.   The facts are interesting and tell the overall story quite well.  There are several reports available on the web; please contact me if you need help.

  • Atropine sulphate by injection and medication relaxes muscles and can be used to treat infant pyloric stenosis

    A Danish study followed 679 patients in one of its counties between 1950 and 1984.  114 cases were treated by medication, resulting in a complication rate of 17% and 6 deaths.  565 babies were given surgery with 8% having complications and 4 dying.  During this 25 year period there was a marked trend towards surgery, intravenous preparation, and the use of general anesthesia.

  • The have been several much more encouraging and recent studies in Japan.
    A 1996 Japanese study reported the successful treatment of 21 of 23 infants (91%) with pyloric stenosis using intravenous atropine, administered until vomiting ceased, followed by oral atropine for 2 weeks.
  • A small Japanese study between 1996 and 1998 followed 14 medical and 20 surgical ps cases.  All the surgeries were successful although 2 had wound infections.  The medical cases were treated with atropine sulphate which relaxes the muscles and must be carefully monitored during the course (typically 3 weeks) and especially at the beginning.  11 babies were treated orally, 2 intravenously, one had to be terminated because of side effects and 2 had to go to surgery.  None of the cases resulted in death or had recurrences, the shrinkage of the pyloric swelling was similar in all babies, but the cost of the medical treatment was lower.
  • Another Japanese study has reported a success rate of 87% in 52 patients treated with intravenous and oral atropine in 2005.  Hospital stays ranged from 6-36 days (averaging 13 days), but despite the longer hospital stay, the costs for the medical group were similar to those for the surgical group, without the risks of general anesthesia and surgery.  The medical patients showed no difference in weight from the norm at age one year.
  • A small Taiwanese study reported in 2004 followed 5 patients, all of whom were successfully treated in the graduated way reported above over a period of between 27 and 45 days.
  • A Serbian study reported on the careful and successful medical treatment of PS without any of the side-effects which have mentioned in many other reports.
  • Four fairly recent Indian studies of which I have read Abstracts (summary reports) are even more encouraging.  One found a 96% success rate from 52 cases.  It’s not hard to understand that in an emerging country such as India a simpler, more readily available and cheaper treatment will be more attractive than in that part of the world driven by quick and technological success.  One of the India researchers summed up: We conclude that oral atropine proved to be a simple, effective, safe, very cheap and acceptable treatment option for IHPS.
  • The research reports I have had access to add up to this:
    although surgery is preferable in the majority of cases, medical treatment for pyloric stenosis could prove useful to patients who –
    have been diagnosed but are not yet at a critical stage of the condition,
    don’t have easy access to surgical care,
    have other complicating conditions making surgery too risky,
    or whose parents refuse surgery.
  • A comparison of the early Danish study with the Asian reports makes it clear that the medical treatment of ps can be as successful as the surgical, provided qualified, committed and vigilant management is available over a fairly lengthy period.

It must be remembered that most doctors in English-speaking countries have been trained as scientists and to work for the best outcome from a narrowly scientific viewpoint.  Treatment options other than the “established standard” of the paediatrician are often regarded with scepticism or dismissed with a list of factors which upset parents will be hard-pressed to question.  Often the “established standard” (that is, surgery) is indeed the best way forward, but sometimes (at least) it will not be.  From the considerable body of reports and other literature I have read, many cases of pyloric stenosis can be treated without surgery, provided a few provisos are in place.

Is there a mild form of infant pyloric stenosis?

This is a question that recently brought a reader to this blogsite.  It is often asked.  Here are some of the facts.

Many pyloric stenosis cases don’t go to the operating room.

Despite years of scanning the mass of information and reports available on the Web, I have never seen a set of statistics on the percentage of Pyloric Stenosis (“PS”) babies who are operated on to save them from wasting to death.  From what I’ve been able to find, there have been many studies on aspects of PS, but never on how many cases are “mild” enough not to go to surgery.

So I can only quote my personal experience as some sort of indication.

Two of the first four PS survivors I came to know did not have surgery and the other two did.  Of course it’s well-known that statistics can mislead.  The fact that the two guys who had surgery also had a scar similar to mine was probably quite normal when all three of us were much younger, but even then it was certainly not representative in the USA.  The vertical midline approach to a troublesome pylorus muscle used to be quite common in many countries, but in recent years it is hardly ever used for various interesting reasons.

More indicatively, since that dawning of my awareness that I was not the only person on the planet to have had surgery that I couldn’t remember (how naïve we all were once!), and that there were others who’d struggled with PS but without surgery, I have met and read of many others whose PS was not life-threatening enough to risk surgery.

Untreated pyloric stenosis doesn’t always kill but it can niggle

There are many stories “out there” of babies, children, teenagers and young adults who continue to have many of the symptoms of a mild form of PS.  Some of them wonder if surgery might relieve them of their troublesome stomach problems.  Others have chosen (or needed) in later years to have their pyloromyotomy to get relief from continuing stomach trouble.

On the basis of the accounts of so many parents, it is clear that some if not many parents and babies never quite reach the point where the defective stomach valve is actually threatening the very life of the baby enough for somebody in the health care industry to agree to the necessary checks and tests.  So the vomiting, deeply frustrating feeding and retarded growth continue on over months or sometimes years.  It seems many babies but not all grow out of untreated PS during infancy.

Sometimes the cause of a baby’s reflux and severe vomiting is not PS at all but an irritable bowel or severe reflux, neither of which cause weight-loss and a deadly loss of wellness.  The cause may also be another, less common but perhaps just as deadly a malady of the gastric passage or another abdominal organ.

Not all pyloric stenosis is actually diagnosed.

In several recent posts I have reported the frustration of parents about the reluctance, even the refusal of many pediatricians to test their baby for what they were sure was PS or another serious condition of infancy.  Tests take time and money, baby blues can be caused by any of several possible problems, and too many doctors are inclined to brush new parents off as over-fussy or ill-informed, perhaps to await how the problem develops, or perhaps simply because they want to move on to the next patient.

PS is too often ignored and left undiagnosed until the baby’s life is in severe danger, obviously so to the family and it seems often recognised as such by medical staff members who were not directly responsible for the tardy diagnosis.  Because of this, there will be many milder cases that escape medical diagnosis and the knife.

Many pyloric stenosis cases can be dealt with by medication.

This is really a subject in its own right.  In historically Caucasian countries with developed economies, the medical treatment of PS with atropine sulphate is usually given scant consideration.  I will explain and discuss the reasons for this in another post soon.

Atropine treatment is a muscle relaxant that allows the pyloric muscle to open and shut without surgical intervention, but because of its effect on muscles it must be introduced over several days and under careful medical supervision.  This atropine treatment has been used for many years by a small minority of pediatric specialists in many countries, and a recent Japanese project found its use succeeded in avoiding surgery in almost every case in the trial.

Parents who 1) know the symptoms of PS well, 2) have gathered strong set of evidences of their baby’s condition and perhaps have previous experience with this malady, and 3) whose baby is not close to death may well consider seeking medical treatment for their much-treasured and still near-perfect recent arrival.  It must be realised that the safe use of atropine sulphate medication requires early diagnosis and a baby whose condition allows the several days necessary for the drug to have sufficient effect.

I am not alone in having had significant difficulty coming to terms with infant trauma and my scarred body, especially in my younger years when I was slim, sleek and handsome!  Although like many survivors I have now come to embrace my scar as a key part of my survival and life story, I would certainly have opted for first trying a course of medication if I’d had a say in this.