The struggle for recognition

Just a century ago infant pyloric stenosis (IHPS), the condition that almost robbed me of a happy and long life soon after my birth, was almost unknown. The rather crude but effective surgery which saved my life at 10 days in 1945 was only discovered in 1912, and during the century since this the deathrate from PS and its surgery steadily fell to very low numbers today.

We all benefit from the huge progress the science of medicine has made in very short time. This blog is being written thanks to this progress, and many of you reading this are able to do so thanks to infant surgery or other interventions only possible in recent years.

50 years ago when I was a child, it seemed all blood and lymphatic malignancy was labelled as “leukemia” for which there was no effective treatment. My grandmother died with a neurological condition which was simply described (translated from Dutch) as “the falling illness”; it may have been Parkinson’s, multiple sclerosis, motor neurone disease (or ALS), or something else! We’ll never know.

The bust of the German surgeon Wihelm Fabry in the market square of Hilden, his birthplace.

Despite pyloric stenosis being well-known to paediatricians today, affecting between 3 and 5 Caucasian babies, and PS being the most common reason for surgery on newborn babies (apart from optional circumcision), it was virtually unknown before 1627, when a clinical description and survival were reported by Fabricius Hildanus (or Wilhelm Fabry 1560-1634), “the father of German surgery”.

But over the next 200 years, only some seven additional cases of pyloric stenosis were described, some without the proof of a pathology report, and others of doubtful origin.

This started to change at the German Pediatric Congress in Wiesbaden in 1887, when Harald Hirschsprung (1830-1916) described two infant girls with proved infantile pyloric stenosis, and his ground breaking article, published in 1888, triggered growing scientific interest in the condition. By 1910, just 22 years later, 598 cases had been recognized, although even as late as 1905 the existence of PS was still doubted by some of the medical world. The final advance in recognising PS came with the discovery of a surgical remedy by Conrad Ramstedt (whose story I’ve told in another blog).

In the early 21st century, much has been discovered and almost all pyloric stenosis babies survive. However there is also still much to be learnt.

  • Medically, the etiology or causes of the condition remain elusive, and thus our understanding and ability to prevent pyloric stenosis have not advanced significantly. My reading suggests that most of the research work on PS is statistical: heredity and family incidence, comparing surgical techniques, the expertise of different surgeons and hospitals, complication rates and treatment costs.
  • There is still considerable division between those who promote its treatment by medical means and surgery.
  • Too many parents are still deeply affected by the attitude and ignorance of personal and hospital medical workers when it comes to diagnosing PS, so that we often read that “my baby almost died before its pyloric stenosis was recognised – and then it was rushed to treatment”, or “my baby almost died because my doctor (or the ER) wouldn’t listen to me.”
  • Parents receive little or no support in what happens after the surgery.
  • The ongoing emotional and physical effects of infant surgery (which it seems are occasional but potentially significant) are only beginning to be recognised.

The recognition of the different conditions that affect babies has certainly been life-saving and for that we all surely are deeply grateful. But there is still considerable room for continuing progress in several areas.

3 thoughts on “The struggle for recognition

  1. Wendy

    This post is one of my favorites so far because I’d like to see an eradication of pyloric stenosis as a condition in general. Extensive research on its etiology is in order with a mind toward complete prevention. Why does the field of pediatrics accept its ignorance about what causes pyloric stenosis? Why isn’t there a commitment toward eliminating it as a problem for newborns and their families? After all, it affects 3-5 out of every one thousand Caucasian babies in my understanding. Your post is a welcome look at an issue of great importance in modern medicine. One of the elephants in pediatrics’ room, in my opinion. Thank you!

  2. Fred Vanderbom Post author

    Thanks for your strong support. While I can understand that medical scientists may regard pyloric stenosis as a relatively minor and “easily fixed” problem that’s not worth many research projects, those of us who battle with flow-on effects would wish its continuing rather frequent occurrence could be greatly lessened. Being told “there are many people worse off” doesn’t do much to help me when I have a problem! It suggests I’m being given the brush-off. There’s certainly an elephant in the Peds’ rooms!

  3. Pingback: Stories from the Survivors of early Surgery

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