Tag Archives: frustration

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: 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.

Shoddy diagnosis = parents in pain

Isn’t it just so satisfying when all the pieces of a puzzle come together promptly as well as perfectly?

Recently I read about a woman who was severely worried about her grandson. It was only weeks after his birth that his grandmother decided to get him to her doctor. Her GP could see immediately that the little man was having problems with his food and that he was starting to become dehydrated: he knew instantly what he was seeing and suggested that the baby was suffering with Pyloric Stenosis. The grandmother looked worried until the doctor lifted his shirt and showed her the scar he’d had across his stomach almost since his birth. Grandma urged her daughter to take the baby to her own doctor, suggesting to him what she thought the condition was. The baby was taken in immediately, operated on and is doing well now.

Wave-like motion across the abdomen after feeding and before vomiting is typical of PS

This story would be quite common. After all, pyloric stenosis occurs in one in every 250-300 babies, so there are many thousands of medical workers who like myself would quickly recognise the condition.

Besides this, pyloric stenosis is the most common reason for infant surgery (apart from elective and unnecessary circumcisions) and apart from tonsillectomies, the most common surgery on children under 5. Every pediatrician, family doctor and hospital emergency department in the world will have seen many cases. Almost always, many of the symptoms cannot be ignored: over several days (or very sometimes, weeks) pyloric stenosis gets to a life-threatening stage that demands medical treatment.

Even more significantly, every medical textbook includes the easily understood and quite obvious tell-tale signs that everyone could easily recognise: projectile vomiting, the reduction or complete cessation of bowel and bladder movements, loss of weight, condition, and finally alertness, and often visible muscular movements across the abdomen and an olive-sized and -shaped mass that can be felt over the stomach.
Yet most people have never heard of this common malady. Worse still, many doctors don’t consider it until they’ve ruled out other problems. And even worse than that, there are hundreds of complaints on the web from parents who have been upset or angered by the way their distress and their baby’s trouble were brushed off with (usually) patronising talk of “all babies puke” and “over-anxious parents”.

Here is one mother’s story:

When my youngest was born he was really sick all the time and the doctor kept telling me he had reflux, but I just knew there was something more to it, as the Gaviscon and Infacol didn’t do a thing. I had him at the doctor 3 times in 2 weeks and he just said the same thing. The final straw came when he was only 3 weeks old and I was feeding him and he took half an ounce and brought up about 4, so i took him to the hospital and the little soul had pyloric stenosis and needed to have an operation. If I had kept listening to the doctor he could have ended up seriously malnourished, but because I trusted myself he was in and out of hospital in less than a week.
I say, don’t ever doubt yourself: you know best!

A month ago an Australian blogger posted the horrendous process a friend of hers endured before the severity of her baby’s condition was taken seriously. Anna’s full account is worth reading; it is both infuriating and heart-rending.

Let me highlight the main points here:

  • Anna’s friends had two normal healthy children before their son developed what they first assumed was reflux at two months.
  • As the “reflux” became worse, the mother took her son to a doctor who treated him for a cold.
  • A week later her son had clearly lost condition so she decided to see another doctor, who diagnosed bronchiolitis again, as well as mild reflux. The mother protested that her baby was projectile vomiting after every feed, that he had stopped gaining weight, and that a cousin had had pyloric stenosis. The doctor said little but his manner told the mother he thought she was over-reacting.
  • Not satisfied, the woman then took her son to the local hospital, which also told her the problem was reflux.The infant was now losing weight, he’d become more irritable, his bowel movements were black and his urine output had fallen. He was seen by a third doctor who agreed that his condition was of serious concern. But he also diagnosed the problem as reflux and prescribed a week’s medication.Three days later, the mother steeled herself to see the hospital doctor again, who refused her demand to test the baby for pyloric stenosis, nor did he give any medication; he did make an appointment with a paediatrician for two days later.
  • The following morning, the baby was listless and crying in pain. With the husband’s and grandparents’ support, the baby was taken back to the hospital. The infant was admitted and immediately treated for dehydration; an ultrasound showed his pylorus was enlarged and closed.
  • The local hospital could not do the surgery but then the city children’s hospital refused to recognise the diagnosis; the tests were repeated but again rejected. The children’s hospital then agreed to receive the baby, now a 10 week old whose only intake was coming from an IV drip, but he would have to go through the entire admission and testing process again.
  • Finally transferred to the children’s hospital, the couple saw a surgeon at 3 am who immediately agreed with the pyloric stenosis diagnosis and arranged urgent surgery. He was appalled at the way the family has been dealt with, and commented that most infants with pyloric stenosis do not survive for two weeks and that most cases are diagnosed within a week.

In my next post I want to set out and explore some of the good and bad reasons why so many personal stories about pyloric stenosis babies are not happy ones.

[I am grateful to Ly’ren, Maxine and Anna, the people whose stories I have included here; the web addresses of the blogs referred to are available on request.]