Tag Archives: diagnosis delay

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.