Category Archives: Doctors and patients

Many parents of sick infants are deeply grateful to their family doctor, pediatrician and ped surgeon for their gentleness, understanding and skills. Sadly, other parents find their medical adviser leaves much to be desired. We explore the needs and expectations of both parents and doctors and suggest how stress can be avoided or reduced.

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

Advertisements

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.

Pyloric stenosis diagnosis – continuing grief

Infants who need life-saving surgery understandably cause their parents enormous anxiety.  This will of course affect all those among whom they move at a stressful time like this: doctors and nurses, E D staff, their other children, and their extended family and even close friends.

It is sad but true that the great majority of parents who post online about their infant’s surgery for pyloric stenosis (“PS”) mention at least two things –

  1. baby worriesThe diagnosis of their baby’s condition was for them a distressingly demeaning and unnecessarily extended process, not only because of the general medical practitioner(s) involved but also due to pediatric specialists and emergency department staff.  The other almost universal complaint is that
  2. this time was the most traumatic event they had ever had to endure.

This situation continues to amaze and infuriate me.

  • PS is by no means rare.
  • It occurs in between 2 and 5 babies in every 1,000 live births (in developed countries).
  • The symptoms are almost always quite clearly recognizable by the time parents seek medical help.
  • Quite often nowadays parents have done some homework and what they report about their baby can easily be verified.
  • In most cases PS can be quite quickly and accurately diagnosed starting with the classical, observable signs that have been used for a century, and without the need for lab work and imaging.

I urge our readers who work (or may work) with sick babies and their parents to read the two articles to which I have provided links.

Doctor-arrogant3One is a news item from an English newspaper which tells the story of a child with many problems, most of them rare and complex.  It is amazing that despite clear symptoms, her PS was not discovered for 18 months!  The PS cannot have been life threatening, it would have been masked by the child’s other maladies, but once again, clearly identifiable symptoms seem to have been missed for a long, long time!

The other link is to a lengthy letter from the parents of three children, each with serious medical conditions, including one with PS.  This very articulate letter addresses the substantial underlying reason for the problem I raise again in this post.

The problem is not that many doctors lack an encyclopedic knowledge of the huge list of medical conditions and their variable symptoms.  Nor is the real issue that not every medical practitioner has a special knack of diagnosing the reason for a health complaint.

not-listeningThe problem is attitude.  Unwillingness to listen.  Lack of goodwill towards, patience with and respect for patients.  Not only that, but all too often a doctor’s attitudes deeply offend and distress the parents of a very sick infant: a superior, patronising, often denigrating and dismissive manner.

The letter mentioned above expresses well the recognition that many doctors do their work with skill, sensitivity and kindness.  It also conveys that parents and their little patients are (later) deeply grateful for the restoration of normal life and health.

But why do so many of the most vulnerable and anxious “consumers” of health care keep expressing outrage and pleading for much better care from medical professionals?

The present situation must be urgently addressed by medical schools’ selection, shaping and training of their students, and also by the relevant professional bodies, and by far more effective mutual accountability and quality assurance policies and programs.

Most of us can only describe the problem and plead and challenge the medical community to work towards improvement…

Is anybody listening?

Pyloric stenosis surgery – “somewhat improved”

Has the treatment of infant pyloric stenosis (“PS”) improved with the years?

Yes!  In a recent post I listed many of the clear and obvious ways it has.

Adults struggling with IBS, adhesions, or PTSD may well doubt that; any and all of these can at times be linked with their infant surgery.

The mother I read about recently must surely also doubt that much has been learnt: she was diagnosed with PTSD a few months after suffering with her newborn through several weeks of slow and shoddy diagnosis followed by “last minute, life-saving” PS surgery.

And the continuing avalanche of parents’ posts on social forum sites like Facebook and BabyCenter show this hapless mother is far from alone.

However, what I wrote in the above-mentioned post stands: it is beyond doubt that, thank God and thanks to the medical community, infant surgery including the treatment of PS has made huge progress.

Infant surgery03Last year I read the summary of a 2014 report that supports the claim that the actual surgery to remedy PS has also improved – but only marginally.  The survey evaluates the records of 791 little PS patients of a pediatric surgeon over a 35 year period (1969-2003).

Most of the results reported in the Abstract of this article (sadly, all that is publicly available) merely confirm the usual facts about PS, information that will not surprise those who know something about this condition.

  • 82% of the patients were male and 18% were female.
  • The average age (presumably at surgery) was 38 days and ranged from 7 days to 10 months.
  • Only 5% were not Caucasian.
  • 10% had a family history.
  • 15 babies (3.1%) were premature at the time of diagnosis (so in fact, many more).
  • 9% had other conditions or abnormalities.
  • 10 babies (1.2%) developed PS after surgery for another condition.
  • 13 (1.7%) were treated medically and avoided surgery.
  • All the pyloromyotomy operations were done by open surgery: the incisions used were sub-costal, transverse, or upper midline.
  • 14 babies (1.7%) had other surgical work done (presumably including herniation).
  • 87 of the operations (10%) were followed by complications: 1.1% happened during the surgery, and 9% post-operatively.
  • 2 babies died.
  • Other evaluation results showed some areas of improvement.
  • When ultrasound imaging was used, the age at diagnosis was reduced by about 10 days.
  • All the operations were done using general anesthesia and endotracheal intubation (breathing tube).
  • From 1982, precautionary antibiotics were given before surgery and this resulted in wound infections being reduced to 3.9%.

This surgeon was also responsible for correcting the inadequacy of the work of some non-pediatric surgeons, and these statistics make grim reading:

  • There were 13 such little patients, 12 of them transferred from non-pediatric surgeons.
  • These 13 accounted for 16 complications including one death.
  • 5 of the babies needed further surgery: 4 for an incomplete pyloromyotomy and the other for a perforation of the pyloric canal.

The report drew these conclusions:

  • IHPS should be considered in any vomiting infant.
  • Ultrasound examination allows earlier diagnosis.
  • Serious complications are uncommon and avoidable, but recognizable and easily corrected.
  • Surgeons who do more than 14 pyloromyotomies per annum see fewer complications.

This report (as stated above) deals only with the actual surgical treatment of PS, and not the complaints of many about the total management of this condition.  The report featured does not survey the standard of the diagnosis of PS, nor the often uninformed, sweeping, and simplistic reassurances given about the possible short- and long-term after-effects of PS and its surgical treatment, about which so many doctors and parents seem to be quite “in the dark” (or possibly in denial).

RUQ PLM-3This blogsite and the social media posts of countless parents and patients express gratitude for the survival of almost every PS baby, ever since the Ramstedt pyloromyotomy (surgical operation) rapidly became the standard treatment after 1912.

It is often remarked that the Ramstedt pyloromyotomy is one of the few surgical techniques that has continued as the standard and virtually unchanged since it was introduced.  It is relatively quick and simple to perform, and almost always immediately effective (as much as can be expected of any surgical procedure).

What the report implies but fails to acknowledge is that many older surgeons continue to perform Ramstedt’s pyloromyotomy using the old and often disfiguring open incisions.  Other recent statistics show that the new and cosmetically superior laparoscopic surgery is now used in over half of PS operations.  Understandably but sadly, many older surgeons resist mastering current best practice.

What then is clear from the material collected and reviewed in the two posts (this one and the linked post)?

  • The overall management of PS has seen huge progress.
  • The actual surgery for PS has changed little in a century, but continues to be marginally and slowly improved on.
  • There remain several areas of immediate and significant concern to PS patients and their parents which the medical community is loathe to recognise, let alone seriously tackle.

And therefore numerous PS parents and patients will continue to speak up, network – and post!

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”.

Pyloric stenosis: dealing with doctors who delay

Doctors working in a hospital or private practice should be aware of the symptoms and other characteristics of infant pyloric stenosis (“PS”).

M820/0092Sadly, many are not.  Just go online and read the horrible stories of hundreds of new parents.  Forum sites like Facebook and BabyCentre (in North America, BabyCenter) include a sorry litany of lamentations and “lip” about ignorant doctors, simplistic notions about the causes of a blocked stomach in a baby, and lack of knowledge of the basic signs of PS, not to mention the autocratic attitude of many of these doctors, all delaying a prompt and life-saving diagnosis and treatment process even further.

Yet PS is the most common reason for infant surgery that is “non-elective” – in other words, unavoidable to save a baby’s life.  And if PS is discovered soon enough and the baby is older than one month, non-surgical treatment is an option (although not often considered) that may save a mountain of trouble in later life.

Parents deserve much better than a medical professional roadblocking diagnosis and treatment: an uncontrollably sick newborn is stressful enough without being repeatedly fobbed off or put down by your doctor.

My holiday reading this month (in a balmy Aussie summer) turned up two telling internet articles that link with the above.

The first was from a British doctor who reflected on the challenges of working in a hospital emergency department (“ED”, or accident and emergency section).  He complains about the impossible hours these doctors work, to us “ordinary people” an unfathomable mystery that has been widely known for many years – and still seems to be beyond the combined skills of the most intelligent, educated and prestigious members of our community to address.

Scared_DoctorWhat this doctor also detailed was that so often ED doctors and staff have to work with the saddest and most damaged and dysfunctional people in our cities and towns: substance abusers, people without the ability or willingness to treat others with kindness and respect, and of course, the many people who have suffered the consequences of these ugly symptoms of a broken world.

Reading this doctor’s account brought home to me (yet again) that there is another side to the litany of parent complaints I mentioned above: many doctors are stressed out by Western society’s unwillingness to pay ever more for health care, by their profession’s inability to address the totally unreasonable workload of “juniors”, and by the continuing and deepening breakdown of society.

The parents of a sick baby are often the “collateral damage” of this.  Little do most of us know or care what may cause a doctor to be aloof, dismissive, or arrogant?  The parents themselves are usually too tense and preoccupied with their sick baby to consider “the big picture”.

What can the parents of a sick child do when they are faced with a doctor who upsets them even further?  Here are some suggestions:

  1. blog-writing1Make notes of your baby’s story: keep a full and detailed record of its weight, feeding intake and times, its output (both top and bottom), its general wellness and appearance, and anything else you notice.  This will enable you to give the doctor or ED staff clear facts.  It’s much harder to brush these aside.
  2. Do your homework and learn what you can from books and/or the web about your baby’s symptoms.  Stomach or feeding problems can be caused by quite a list of different medical problem conditions, and each comes with different symptoms and needs different tests to help guide diagnosis.  Many doctors will not spend precious time or order costly tests to search for or nail down a diagnosis unless there are already clear signs pointing to it, or (and this is sad but understandable) unless it becomes clear that the baby’s life is in danger (e. g. as shown by steady weight loss or dehydration).
    Sadly, if this happens, the baby may already have suffered effects on its brain development.  Parents should do what they can to make it easy for their doctor to steer a diagnosis in the right direction.
  3. writer-thumbA doctor is trained and likes to work as a scientist: they have to gather the evidence and work methodically towards a conclusion.  This means eliminating possible causes.  Allow the doctor to be the scientist and stay in the driver’s seat.  Hold yourself back from telling the doctor what you think or have already decided what the problem is, but be informed and alert enough not to let the doctor fob you off or delay a decision if the symptoms you have listed clearly point to a particular problem.
    The need for all this advice is abundantly clear.  there are countless reports of doctors ruling out PS “because your baby is a girl” or “because your baby is not your first-born”.  Other common reports are of doctors refusing to even consider testing for PS even though there are clear symptoms and one (or even both) parents had it and the condition is common among the baby’s relatives!
  4. Patient & doctor03Be firm and insistent about what you expect but stay calm, respectful and reasonable – hard as this may sometimes be.  Most of us do not handle hostility, abuse, and unreasonableness well!  Doctors are no exception.  Mind you, it seems that not a few doctors invite anger and harsh language by their lack of medical competence and/or people skills.
    If you know you risk “losing it” in some way or other over a sick infant, it would be wise to take a close, supportive and mature family member or friend along.  Some people I have advised online have (I believe) not helped their baby’s cause by their own behaviour.

My next post will look at the second article – about the selection and training of doctors.

Are Pyloric Stenosis problems history yet?

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

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

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

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

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

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

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

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

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