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.

Brain damage after Infant Pyloric Stenosis

Patient & doctor03“If my baby has had pyloric stenosis (“PS”) and had surgery to remedy it, will there be any longer term after-effects?”

Most medical professionals will brush this parent concern away: “No, once your baby recovers, you and your little one can put this episode completely behind you!”

If only this were true…

We must all understand this:

Surgeons’ competence and interest are in the immediate surgical “fix”, paediatricians may follow the infant’s story for a few months, but very little has been done to follow these “Py-children’s” stories over 10, 20 or more years.

However, the very few studies that have been done have identified several possible hazards. This blogsite has dealt with most of the most significant ones:

  • continuing gastro-intestinal (“GI”) instability presenting as GERD or reflux, as IBS, or as a tendency to vomit (in over 50% of PS survivors as one study found) – all due to the high gastric acidity levels which helped trigger the PS in infancy and remains high lifelong in many or even most PS survivors;
  • in a substantial minority (estimated 5-15%) of cases adhesions develop as a result of the PS surgery and will cause pain and distress to a significant extent;
  • a minority of PS survivors take many years to come to terms psychologically and emotionally with their surgical scar – acknowledged as a lifesaver but growing more obvious with the years, in which they had no say, and which some parents decline to talk about;
  • a very small number of older PS survivors have gone public about struggling with symptoms of PTSD diagnosed as resulting from the rigours of older style infant surgery, when many surgeons believed there was no need for anesthesia (“babies don’t have a memory”) and when long maternal separation was part of many hospital routines.
  • There is at least one other area of possibly long-term damage that can come with PS and infant surgery.  This is damage to the brain from starvation resulting from delayed diagnosis of PS, and/or repeated anesthesia, especially when the PS came with another hazardous condition of infancy.

This is the subject of this post.

Here follow some of the facts that have been established by medical research and reporting. I have included a link for every point noted but have collected many more reports. Readers are free to ask for my full reference list; contact me by email via the “About me” or “About this blog” tabs at the top of the page.

Fact 1:  Single use anesthesia probably causes no long-term damage

 A 2016 report clearly established that single and simple surgery for hernia repair resulted in no brain damage at 36 and 48 months.  This report has been widely quoted to reassure worried parents.  Lengthy or repeated anesthesia for more complex procedures was found to be damaging.

The anesthesia used in the typical pyloromyotomy (to stop PS) is part of one fairly quick and simple surgical procedure.  However, almost all PS surgery occurs in the first weeks of an infant’s life.  I have not found any study of the effect of a single short anesthetic episode on the brain of a very young infant.

So repeated surgery using general anaesthetic certainly does affect the infant brain.  Prevailing opinion is that single use does not affect a baby, but the studies “establishing” this did not involve newborns but children at 3 and 4 years old!  In matters of life and death general anaesthesia is a known and acceptable hazard.  But contrary to the prevailing opinion of the medical work, most PS babies can quite easily be treated with medication. And it is in many countries. More targeted studies are needed.

Fact 2:  PS-related malnutrition does have long-term consequences

 

A baby’s PS episode can easily result in significant starvation, as prompt and accurate diagnosis is sometimes difficult and sometimes suffers from negligence, lack of the required skills or unnecessary delay.  A baby is developing rapidly and is wired to need regular feeding: this is especially true of the human brain.

Starvation and resulting malnourishment are very real hazards with PS, and several studies including an Australian one published in 2018 have shown that PS infants and children have significantly higher levels of brain damage than control groups.  The cognitive (thinking, reasoning, remembering, imagining, or learning words), receptive language (the ability to understand information), and motor skills (the precise control of muscles in order to perform a specific act, whether in the classroom, in sports, or personal clumsiness) scores are most clearly affected.

I cannot but link these findings with the observation that several of my skills in these areas are clearly below those of my four siblings. This is not to deny that a PS survivor can never be a top athlete, accountant or academic – all I observe here can be questioned… but my lifelong observations remain!

A 1973 Scandinavian study found links between PS-caused starvation and below normal social and communication skills and described them as pervasive developmental disorders (PDD). It found that parents could recognise the symptoms before the age of 3 years.

But it added that if recognised early and given special remedial support, children with these difficulties will usually overcome the worst of their handicaps.

Fact 3:  There is a possible link between infant PS and Autism Spectrum Disorders (ASD).

A large 2009 study conducted in Western Australia over 15 years found that PS babies did not have a higher incidence of ASD than a control group, whereas babies with many other birth defects did.  But it mentioned that several other studies had found that infant PS also occurred significantly more often in children who were also diagnosed with ASD.

autism01Another large study was reported in 2009: the Autism Spectrum Disorders Report, which is also readily available online.  Like the WA Report, it found links between ASD and many categories of birth disorders, but not with PS.

As with the effects of anesthesia on the fast developing brain, the medical world is not agreed on this subject.  This clearly is one of the areas in which more research (read: more funds) is needed – but of course there are many even more serious conditions that are crying out for more interest and funds for research. It has not been established that there is a common cause of IHPS and ASD (such as a higher incidence of defective genes and/or environmental factors in these children) or that one condition actually triggers the other.

Conclusion:  Greater awareness and more studies are very much needed

My reading list on this subject area reflects a telling lack of clarity and agreement, and this is far from the only subject area of infant PS on which studies have arrived at conflicting and sometimes troubling conclusions.

In 2013, the Journal of Neonatal Surgery published a widely disseminated overview article marking the centenary of German doctor Conrad Ramstedt’s publication of his discovery of and success with the PS surgical technique that quickly became and has remained the standard way of dealing with infant PS.  Dr Raveenthiran Venkatachalam’s remark (as “Athena”) on the subject of this post is worth including here:

Dramatic relief of symptoms following pyloromyotomy has lured many pediatric surgeons to declare a cure after one or two follow-up visits. Long term results are generally presumed to be good rather than proved by evidences. Two recent papers question this com-mon assumption. Using Baylay scales, Walker et al [21] assessed neurological development of 52 infants with HPS and 211 healthy infants at 1 year of age. Cognitive, receptive language and motor scores were significantly lower in HPS infants than in controls. It is unclear whether this adverse outcome is attributable to the dis-ease process or to anesthesia administered during surgery. Although further studies are needed to conclude whether this difference is of any practical significance, the findings of this study are certainly a source of concern. Saps and Bonilla [22], in a case-control study, studied 100 HPS patients and 91 controls in their late childhood. The mean follow-up period was 7.2 years. Nearly 25% of those who underwent pyloromyotomy in infancy developed chronic abdominal pain at a later age; while only 6% of the controls were so. Irritable bowel syndrome, functional dyspepsia and functional abdominal pain were more common in HPS group than in control group. Athena considers these two studies as eye-openers necessitating long-term follow-up of HPS infants.

What most doctors seem to remember about IHPS from their med school classes and textbooks is necessarily basic and general.  If more is said, it’ll be even more easily forgotten.  Medical science is such a huge body of information.  Although PS is quite common, most medical professionals will see very few if any cases.

We can be thankful that in general PS and much infant surgery today have no major ongoing consequences. If there were any life-threatening conditions or obvious disabilities, the medical world would know about this and PS parents would not be silent.

One of the most traumatic events new parents can experience is finding their baby vomitting uncontrollably, forcing them to submit their newborn to life-saving surgery.  We can be thankful that almost all babies and their parents nowadays survive pyloric stenosis (“PS”).

Once that crisis is behind them parents’ next question is inevitably: will this condition or surgery affect our child’s future?  Reliable and informative answers to this question remain challenging and usually unreliable – but few doctors, parents, and survivors seem to be aware of this.

Because of this blogs like this one and social media discussions will continue to advocate for far greater awareness of the facts.

See also my post: Is a sick and starving baby affected for life?

Why your doctor may delay diagnosing your baby’s 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.

parent painBut if you or your parents suffered to the extent of being traumatised by PS, you join a sizeable club!  Social forum sites such as BabyCenter (or –Centre), Facebook, MedHelp, Patient 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…

Sadly not a few doctors (notably GPs and paediatricians) are arrogant and dismissive.
Parents who have done some solid homework on PS may be brushed off, those who have had a personal experience or previous baby with PS may be ignored, mothers who have nursed several earlier children are told their feeding technique is the problem, and first-time mothers with multiple PS cases in their family are told they are “nervous nellies”.

Despite key symptoms that seem to clearly confirm a PS diagnosis, doctors may well delay diagnosis, referral, and even ordering tests.  Rather they will “watch and wait” or prescribe medication and tell the parents to “come back after a week if symptoms persist”.  This sometimes continues for several weeks (yes!).

My evaluation?

  1. PS occurs in between 2 and 5 babies in every 1,000, so the several thousand stories I have read on the various online social media pages over more than 20 years are nevertheless a tiny proportion of the whole picture.  On the other hand, for every story that gets to (say) Facebook there would be several that don’t.
    A recent Danish study is the only large one I know of that’s been done to chart problems around PS, but this study only dealt with risk factors (“etiology”) and several elements narrowly related to the surgery (“morbidity”).
    I am so annoyed that nobody seems interested in doing a substantial professional study on many more of the questions involved with PS.  I’d so much like to run something with the Facebook network of several thousands but (a) it would be well-nigh impossible for a lay person to get enough participants, and (b) the results would not be statistically representative.  For useful data we’d have to have access to a less “slanted” sample based on hospital records – and then on that basis get enough participants.
  2. PS can develop very rapidly or very slowly, and some sometimes too mildly for surgery.  Many of the accounts on Facebook tell us of the operation occurring 4-6 weeks after the first signs of PS in a newborn, and that the baby was losing condition only in the last few weeks.  Others like me were diagnosed and sent to surgeon within days of birth.  Others again are diagnosed only at a dangerously late stage and after weeks of being fobbed off by medical professionals.
  3. arrogant doc5Doctors are increasingly trained in “the scientific method”.  This means that as a doctor you’ll ignore “circumstantial evidence” (like what people say and what you yourself can observe) and use only the evidence of imaging and blood tests.  And you delay serious consideration and diagnostic tests until you decide that running these tests justifies the cost, and then you wait for results.  I had my op in 1945, “the good old days” when (judging by the medical articles of the 1920s to 70s) the medical community usually and quite effectively went (a) by the physical signs which the parents gave the doctor and (b) what the doctor could observe: no soiled nappies, non-bilious projectile vomits, peristalsis, loss of weight and condition, dehydration, and “the pyloric olive”.
    Because of this trend towards being pedantically “scientific”, the cost factor, and the fear of complications and litigation, many doctors today try to avoid the op until it’s absolutely unavoidable.  The unstated attitude seems to be, “If the delayed diagnosis damages the infant, that won’t likely be evident for many years, by which time a link with the delay will be impossible to prove”.
  4. There are several organic (or organ-formation) bowel conditions of infancy that can at first be confused with PS.  This is especially so if the PS develops slowly and not many of the key signs of it have developed yet.  And then of course there are the more common non-organ-formation problems such as infection, reflux or GERD, and faulty feeding techniques.  Again, if the signs of PS are there, any delay could be damaging to the child and prolong the baby’s and the parents’ pain.
    And again: some PS never develops beyond a level mild enough to be treated with medicines, whether or not such treatment is effective in the long term.
  5. Sad to say (and judging by the evaluations by countless parents from all over the world) there must be far too many doctors who have a “god complex”.  This shows in their attitude to what the parents (and especially the mothers) report, even when they have done their homework and/or know their own and often their family history includes PS.
    Even worse, doctor friends have confirmed this to me, including one horrified parishioner who told me that on the first day of Med School (UNSW) his class was told that they now belonged to the upwardly mobile and indeed the elite of society.

Is it unreasonable to believe that much of the deep frustration and even trauma reported on Facebook is quite avoidable?  Of course not!

Mum w babeHow do troubled parents deal with this kind of situation?

  • Do your homework: google for the symptoms of PS and record the obviously significant things about your child: daily weight, input and output, indicative events, and general appearance and alertness.
  • Don’t consult your doctor alone: take your spouse, partner or other relative or friend for support, to convey your seriousness, and to remember and record what is said and done.
  • Don’t go with a preconceived idea of what you want, but don’t be snowed either.
  • Get a second opinion if necessary.
  • Go to the ER of the nearest children’s or general hospital if dissatisfied and if necessary don’t leave there until you sense it is right.

Always remember, you are your infant child’s only and best advocate.

Their future wellbeing may well be at stake.

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

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”.