Tag Archives: parent communication

Who do you think you are?

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

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

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

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

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

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

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

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

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

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

Amongst much else I learnt –

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

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

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

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

Pyloric stenosis: treasure and then trauma

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

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

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

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

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

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

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

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

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

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

In a later frustrated response –

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

Another new mother added –

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

And another mother wrote –

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

And she added –

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

And another mother’s story in brief –

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

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

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

It needs to be added here that –

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

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

Reflecting on my 70th

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

150926-25 sml

Renmark Reunion September 2015

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

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

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

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

Pic 12

Mother with me – October 1945

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

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

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

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

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

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

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

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

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!

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 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.