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.
But 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!).
- 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.
- 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.
- Doctors 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”.
- 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.
- 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!
How 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.