Tag Archives: parent

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

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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.

Aware parenting after infant surgery

At the age of just 3 years, children learn to use the word “Why?”

We humans are incurably curious, we want to understand what we see and hear.

Read this recent social media post by the mother of a pyloric stenosis child –

mum-dtr talk1My son was almost 9 weeks when he had his surgery.  It took them a long time to diagnose him; he will be 6 years old in a few weeks and his scar is about 3″ long.  He’s grown over the summer and has complained a lot about his tummy hurting.  That was part of the reason I joined the group so I could find out if other PS children experienced the same thing.  He also had a hernia repaired when he was 14 months old.  The scar bothers him when he gets asked what happened, but I tell him you were really sick and needed an operation to make you better.  Mommy loves your scar.  Then he smiles and laughs and forgets about the questions.

I wonder, what is your response to this post?  “What a lovely Mommy”?  “How nice”?

This was my response to this mother –

That interaction between you and your son reminds me so much of when I was his age!

My mother and I would have times like that, and my mum would use those exact same words.  But I never could never smile and forget to ask any more questions.  And when I asked more questions, the response was always, “We’ll talk about that sometime later” – but we never did.

150414-085And so from age 5 I increasingly felt embarrassed about the scar running down the middle of my belly, and whenever I asked the questions I had I felt fobbed off by pleasantries.  This deepened a then already real phobia that would trouble me for many years.

Today we know so much more and so I’m sure you’ll be sensitive to your son’s deeper personal feelings and be able to help him.  I still wish now that my mum (long passed on) had taken the initiative several times over my growing years –
1) showing she recognised my struggle instead of telling me off for showing any sign of it,
2) telling me about her part in and feelings about my first op in detail,
3) answering any questions I still had, and
4) discussing with me how I could work on my phobia.

Your son may grow up being very different from me, of course, but believe me, I’m far from alone in what I’ve just posted here!

Infant surgery then and now

Infant surgery has seriously affected some of us whose lives were saved by it.

This is especially true of those like me who are now at the older end of life: we have been affected emotionally and psychologically despite having no conscious memories of the surgery we had so early in our lives.  Our bodies record potent trauma even when our mind cannot.  This does not seem to affect everybody but others’ stories and tell-tale signs are too similar to reject as fiction.

Surgery in the past was rather basic, especially when performed on infants and in the light of current practice. Often in the not-too-distant past no safe general anesthetic and trained pediatric (children’s) anesthetist were available: general anesthetic agents were hazardous for infants in their first two years unless a very careful and experienced anesthetist was available.

Local anesthesia affects the tissue at the operative site, making it hard to work on, so many surgeons would also exclude its use.  So the squirming baby was strapped down, and quite often given a shot of whisky or a sugar cube laced with rum to somewhat distract it.  Or a paralysing drug was injected and a breathing tube inserted.  No picnic for the baby, and it must have been tough on the operating room staff.

The hospital regime then was also “different”.  Two weeks or more in hospital was standard after an “uneventful” pyloric stenosis (“PS”) operation, and often the mother was allowed no contact for fear of infection, which still killed about 50% of PS babies post-op in UK public hospitals after WW2.  I understand my mother had to deliver breast milk daily over 15 km to the hospital for 2 weeks but was never allowed near me, let alone nurse me.  (My surgery was at 10 days so what an introduction to nursing her first baby I was for her…)

Starvation pre-op plus surgical shock plus maternal deprivation – none of it remembered of course, but it has really affected me and others of that generation long term.  Add to that: some years later, these baby-boomer and earlier parents were totally unaware and incapable of managing their own and their growing child’s developing ptsd.

Woodstock-1But hey!  Ever since Dr Conrad Ramstedt and others began publicising their newly discovered “pyloromyotomy procedure”, most of us PS babies no longer died of dehydration and starvation.  Even those who had the PS op in its early days have mostly lived to tell their tales and have often lived well.

But I am also very thankful that despite the many post-op issues reported on Facebook and other form sites, some of the old damage is no longer being inflicted today.  Infant surgery today, even in its most severe forms, is now far less traumatic for all concerned, and most hospital regimes are sensitive and aware.

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: 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.

Networking after pyloric stenosis (3): Diagnosis

Parents of babies afflicted by pyloric stenosis (“PS”) are routinely assured that after surgery their little treasure will be “a different (and hugely improved) baby”.  Often this is immediately true: instead of a baby vomiting him- or herself to death, PS babies often thrive and quickly reach the top of their percentile range.

But of course this is so only if the operation was –

  • without complications (like infection or a hernia), and
  • successful in opening up the pyloric passage (which it usually but certainly not always is), and
  • if the baby is not left with years of GERD (reflux) related problems, a rather common outcome.

Many with a personal experience of PS, whether as parents or survivors, do have ongoing problems –

  • during the immediate recovery period,
  • during the child’s first years and sometimes continuing lifelong, and/or
  • in adulthood.
  • These people often resent that the medical advice they received
  • denied these possibilities,
  • left them with false expectations that” all would be well”, or
  • skirted over the future  possibilities embedded in a list of “to be mentioned” items the parents had to acknowledge and sign before surgery.

And when problems did arise (sometimes within days, sometimes after some weeks or years), the typically rather obvious link with abdominal surgery was denied despite several research reports to the contrary.

Diagn palp.jpgAmong those who report having had a bad time with PS however, no group is as numerous or angry as those who experienced a diagnosis debacle, and in this post we listen to just a few of these parents, again from the several PS Groups on Facebook.

A L was born about 1985 and had a son in 2009
I was born with PS and my second child, a son, William was diagnosed with it at 4 weeks.  Luckily, having had it myself, I was well aware of the odds of my child having it, especially a son.  The pediatrician as well as the ER wasn’t extremely willing to diagnose PS until I advised them that I had also had it.  Prior to that, I got quite a bit of attitude and snubs…
It is very disturbing to me reading others’ posts that something that is so easily rectified is so easily dismissed.

E D, born 1984
It feels so nice to know I’m not the only person to have had this condition!  Even now doctors, midwives etc don’t know what PS is: awareness needs to be raised!  I was one of the unlucky ones and had my operation in 1984.  My mum had to fight with the doctors as they wouldn’t diagnose me with PS as I was a girl!  I had my operation at 3 months when my weight was lower than my birth weight – thankfully I’m here to tell the story!  Have had two little boys and thankfully neither of them have had it!

arrogant doc5L G – son born 2014
My son had PS at 5 weeks.  The doc said it was reflux, even though the health visitor said it was PS – because he was born at 36 weeks he said he couldn’t have it that young.

M G – son born 2010
My son was diagnosed at 5½ weeks old with PS in 2010.  It took doctors 5 days and numerous times of me arguing till I was sent to a new hospital to find out what he had.  My son almost died but had his surgery and soon bounced back.  I am so thankful he is better.  But I wish hospitals and doctors would check babies closer for this kind of condition instead of it being fobbed off as reflux all the time.

C L – son born 2014
My son had PS and had his operation at 5½ weeks old after me refusing to leave the doctors as they just kept prescribing gaviscon for reflux.  He had key-hole surgery and was instantly better!
Our surgeon told us our son had been left that long his body had used all its fats and was about to start using up its muscle.  Thank God he was seen when he was.

M K – daughter born 2013
self-harmMy daughter, now 10 months old, had her surgery at 5 weeks old, was misdiagnosed by 5 different doctors over a 5 day period and had 2 negative upper GIs… she weighed 6 lbs at birth and at 5 weeks old was 4lbs 10oz after no doctor would test her for PS.  We almost lost her from dehydration before I could find one that would… all because she was my second born daughter and they said [that the] odds were PS was not the cause for her projectile vomiting!
She is now experiencing bad reactions to milk.  Took her to the doctor and they had no explanation other than possible allergy symptoms from sensitive stomach MAYBE related to her having pyloric stenosis as a newborn.  But they have no clue.  I thought it was all behind us, as those few weeks back in May were the worst I’ve ever experienced.

D M – son born 2014
My son is 16 weeks old and had surgery for PS at 4 weeks after 3 days in a row of me going to the doctor, 3 days in hospital and then still saying it was a virus!!!  Long story short he had his op but still has some ongoing issues.  I have joined other groups and it is clear to see a lot more research needs to be done for PS.  The whole “normally happens in first born sons and everything returns to normal after 48 hours” is just not true in all cases!!!

F M son 2014
My poor boy has not been able to feed for over a week due to “reflux”, the hospital said.  I had doubts and have had him here 3 times (currently back in as we speak).  Finally after him losing 9 oz in 3 days, they have listened to me which I tried to get them to do the first time I brought him in – which was a week today.  I have said all along I thought he has pyloric stenosis but they brushed it off as reflux.  Brought him back today as no improvement with gaviscon and ranitidine.  They did an ultra sound and what does he have?  Pyloric stenosis like I said 1 million times.  My poor boy has been ill and sick after every feed, massive amounts and then made constipated with gaviscon and it’s not even f***ing reflux.
I am so angry it took 5 minutes to diagnose today and should have been done last week but they fobbed me off.  Now having to go to another hospital so he can have surgery a s a p to have the issue fixed.  Can’t believe they let it go on so long without listening to me and checking for this earlier, my poor boy has been through hell because they messed up and he has been made worse because they didn’t believe me.  Upset, angry, and relieved we finally have it confirmed.
Ladies, if you think something is wrong don’t give up, and keep pushing them… if I hadn’t we would have been sent away [for another week] and he would then have been treated for cow’s milk allergy, and God knows what could have happened because he hasn’t been getting anything from his feeds.
Can’t believe they wouldn’t listen to me and I knew what was wrong.

J S
arrogant doc4I had pylorics, so did my son and 16 other family members; unfortunately one did pass away but that was back in the 50’s.  And doctors are still saying it’s not hereditary.  lol  I think our family has proved them somewhat wrong. lol
Total fools!  The thing is, it was on my side and my partner’s side, as I said, 16 members, but [my son was] still diagnosed with gastro reflux for 3 months even with this history.  Total joke!
16 members across the family had PS, and we saw the symptoms straight away.  This stems over 55 years: my son is the most recent case and I was the 10th member but female, so not diagnosed as soon as usual.

L S – son born in 2007
My little boy had pyloric stenosis.  He was diagnosed at five weeks after a hideous time of not being taken seriously by the doctors.  I went back for the third time and refused to move unless they saw us again and self-diagnosed.  Finally they took me seriously.  Literally moments after his op he was a different baby.
He’s seven and a half.  Very pleased, yes.  It’s taken this long to talk about it though.

E T – son born 2014
My son is 2½ month old and 2 weeks ago we noticed small changes in his behavior.  Not as many poopy diapers, acting colicky, constantly hungry like [he was in] one really big growth spurt.  He was never a spit up baby, but a week ago he started projectile vomiting.  We went to his pediatrician twice, only to be told he had a very nasty virus.  We were told to give him clear fluids for 24 hours and the virus should work itself out of his system.  He then started vomiting blood… lots of blood-filled vomit.  We went to an after-hours clinic and they sent us to the hospital because he was dehydrated.  We went to the hospital, they did a blood panel, x-ray, administered fluids via IV, and sent us home with zofran.  The next morning he was still vomiting blood so we went back to the hospital and they took an MRI and discovered he had PS and referred us to a children’s hospital for the operation to fix it.  During the operation I cried, but I cried more after the operation since he had to wait 8 hours before he could eat anything and could only have ½ ounce and was crying uncontrollably because of hunger pains.  My heart hurt for him.  He is doing much better, being 4 days after his surgery!

Doctor woman makes a warningS Y – self born in 1985 (& father 1953)
I was born in Dec 1985 and by the second day I was projectile vomiting every time I was fed, and sometimes after my parents thought I was done I would go again for another round.  My parents both knew that something was wrong with me, my dad remembered his parents telling him what happened with him (they thought he had PS but it turned out to be a tumor bouncing up and down in his stomach)… My parents went to my pediatrician and he said that there was nothing to worry about – all babies throw up.  Then they went through 3 other doctors and they got the same story and a few even told them that the likelihood that I had PS was slim to none, this went on until I was 15 days old and my mom and dad decided to take me back to the hospital I was born at, went into the ER and found the doctor that saved my life.  He was a pediatric emergency surgeon.  I was in surgery within a few hours of being admitted so that they could get all the tests and get me prepped for surgery.  By this time I had lost 1 lb, which was huge considering I was only 6 lb 5 oz.  I was released just in time for my very first Christmas.
After my parents recuperated from my ordeal they talked to that surgeon and found out that if they were to choose to have another child that child most likely would have the same thing I had.  They talked and couldn’t go through it again.
My dad had his surgery in 1953…

The awful stories above would be understandable if PS were a rare condition.  But it is not.  The incidence varies a bit, but in developed countries ranges between 2 and 5 in every 1000.  This means most of us would know several people who carry a PS story.

It must also be recognised that PS quite often (but far from always) takes a week or more to become “full blown” and able to be clearly diagnosed by touch, x-ray and ultrasound scan.  And the health system as well as parents would not take kindly to an unnecessary surgical operation on a baby.

Yet the message is clear from the above stories and hundreds like it on the web.  It is also a simple message that should not be impossible to learn and remember, especially by the highest IQ endowed people in society.

  • Arrogant shirt1Too many parents get “attitude” from their GP and pediatrician: patronising condescension and dismissiveness, even when the parents have done their homework, have PS in their family or personal genes, and find their baby’s weight loss has become serious.
  • One would hope it is true that today’s trainee doctors are being taught more about people skills.
  • Many doctors seem to wait far too long before ordering tests, resulting in too many PS babies being near death and possibly damaged for life by hunger and dehydration.
  • From the countless available stories it seems few doctors advise seeking a second opinion or refer a baby to somebody more knowledgeable.
  • One would hope that those who are humble and self-aware do one of the above – with the result of no traumatised and angry parents writing to a forum site!

This blog has several posts on the treatment of PS by medication with atropine or Ranitidine, a non-invasive option that is 100% safe for PS babies born full-term and older than 2 weeks and is standard practice in several developed (but non-English speaking) countries.  Find these posts using the “Categories” box at the top right.

Parents who strongly suspect their newborn has PS have very good reason to insist on their doctor giving them respect, time, and clear explanations of their advice.  It may be helpful for them to take a supportive person along to the consultation.