“Not my baby!” Can we avoid infant pyloric stenosis surgery? (1)

Late 2011 a woman in her 40s added this telling remark to a medical forum on the web:

As an infant I was diagnosed with pyloric stenosis; my mother was a nurse and refused to have me surgically treated.

Why would a mother with nursing experience refuse “life-saving surgery” for her newborn baby only 40 or so years ago?

As one who has learnt a lot about this subject area I can say there would likely be two reasons:
1) until quite recently, infant surgery could be horrific, and
2) for a baby with infant pyloric stenosis (“PS”), surgery is often avoidable.

In this post we’ll look at the long-term effects infant surgery can have, and next week, how in PS cases at least, there are alternatives.

How was infant surgery often horrific?

Until it was challenged from within the medical establishment in the 1980s, much infant surgery could be ghastly, with lasting emotional effects on parents first and then the patient.  It was widely believed that babies would not remember pain and suffering, and (as they say) “the rest is history”.  There are posts about this on this site, and links in the column on the right (“Blogroll”) to informative medical reports, articles and websites; much more information is of course available by googling.

Why was much infant surgery so crude?

Medical science has made huge advances during the time many of us can remember.  When I was operated on for PS in 1945, some surgeons used general anesthesia, but many numbed only locally or pacified their tiny patient with a sugar cube or brandy.  Anesthetising babies being quite different from working on children and adults, pediatric anesthesia not yet being a specialist field, and many surgical operations on babies being done by general surgeons in the local hospital, it is no wonder that the conditions and results were often “basic”: a life immediately saved but at a cost that would become apparent in later time.

Add to this the fact that in many British hospitals (for example) the deathrate from and after infant surgery remained around 50% until late in the 20th century, and we get a picture of the difficulty some or much of the medical world has had learning to manage surgical shock and post-operative infection.  Babies typically stayed in hospital for 2 weeks after a fairly small and routine surgery like pyloromyotomy, and during this time they were kept under strict infection control: my mother was separated from me for two weeks when I was less than a month old.

There’s very, very little that I know about the details of my PS surgery.  Parents in those times believed their children were better shielded from unpleasant facts and memories, and the medical world let out even less.  My medical records were destroyed long before I was old enough to ask for them!

Were there long-term effects of earlier infant surgery?

The military servicemen of the two World Wars and other conflicts (Korea, Vietnam, Kosovo) of the 20th century talked very little about the horrifying experiences which many of them carried home.  They would try to drown their memories with alcohol in the pubs and clubs, but as they aged, the strain showed in their marriages, family life and personal health and well-being.  Today we’re actually trying to grapple with the depression, post-traumatic violence and suicide that our Iraqi and Afghan vets are showing.

Again, it’s only in recent years that we’re talking about and learning to deal with the post-traumatic stress disorder (PTSD) that afflicts many who have suffered various forms of abuse and separation.

Like the military, those who have suffered abuse, and the various “stolen generations”, parents who had to submit their newborn baby to crude surgery (or “procedures” whose details were clearly kept from them) and then kept separated from them for weeks: these parents were also traumatised.  I believe I have personally experienced this, primarily in my elders’ stubborn silence about their experience with me throughout their lives.

Their trauma and what I myself experienced have affected me.  Only in recent years have we learnt about “somatic memory”: that our body registers and is affected by pain and separation long before our brain learns to remember and recall information.

Again, like the military and others with PTSD, most of those who have suffered trauma from infant surgery are not aware of the actual cause of their depressive, obsessive, violent and/or avoidance behaviours, and just continue to live with them.

As I’ve mentioned in earlier posts, I was hungry to understand my strange and troubling inner life and found all the behaviours that bothered me were typical of PTSD; I had no memory of being traumatised but discovered the circumstances of my PS operation, and the workings of our earliest memory from research – and wow, the pieces all fell into place.  Not only that, but networking via the internet showed me that my hitherto lonely journey was not unique.

Could I have avoided this surgery and PTSD?

Hindsight is often 20-20, but only useful if we learn from it for the future.

I am more than thankful for my life and loves, my parents’ devoted and caring nurture, my Christian faith, my share of life’s experiences and the exciting times through which I’ve lived.

So why not “move on” and forget about blogging here?

The reason I and others are posting every week is that there are things we’ve learnt about PS surgery and PTSD which not only benefited us, but on the basis of which others can have a better and happier life than we have had.

I’d like to write about these discoveries in my next post.

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2 thoughts on ““Not my baby!” Can we avoid infant pyloric stenosis surgery? (1)

  1. Wendy

    Wow, that woman in her forties did not get surgery for PS and she lived! Her PS would have been active back in the ’70s. What a brave mother to have made that decision regarding her daughter’s health. I’d love to know more details of that story.

    I like the way you organized your post. Information in your next post will be invaluable to many. The details in this post show how “horrific” surgery can be. Many are suffering silently and you are providing a safe place where support can be found. Finding you was a major step in my recovery from the trauma of PS surgery. Knowing we do not suffer alone is life-saving. We are not crazy or freaks; we have PTSD!

    Reply
  2. Fred Vanderbom Post author

    I’ve added the link to this post so that interested readers can find the woman’s question and a doctor’s answer.
    Yes, her mother had both great confidence and courage to make that decision, back 40 or more years, mind you. Knowing what we can know now, I understand and support what she did, and would probably do the same given a similar situation today.
    Our blogging is getting this information out and I trust more parents will start to feel empowered to follow her example. I have explained and plan to post again soon on why parents who want to try medical treatment for pyloric stenosis are not going to lose their baby.

    Reply

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