Pyloric stenosis: a good news story

Many readers visit this site (an average of some 90 per day at present), and most of these readers are looking for any information they can find about infant pyloric stenosis (“PS”).

Despite being the condition which takes more babies to surgery than any other, most people have never heard of PS – although they would know several people only because they have survived PS.

This very early and otherwise fatal condition does sometimes leave long-term and damaging consequences, however, as does the operation – even today but even more often as PS was managed in the past.

So it was like a breath of fresh air when an English reader sent me her story of PS.  I pass it on with my warm thanks to her – and an invitation to other readers!

*        *        *

On a cold January night, anno 1951, I arrived on the planet in a town in the county of Staffordshire, England.  All seemed well at first as I was a “normal” birth weight and not premature; rather, said my mum, about 2 weeks late.  According to what I was later told, my age at the moment of my pyloric stenosis op. was, “about eight weeks”.  Now this seemed VERY young until I read some of the stories and comments on your blog, Fred… you yourself at the tender age of only ten days !  Making me seem positively “old”.  haha.  What does “fit like a glove” though, and is big news to me, learned from the comments on your blog/site, is the connection between Pyloric Stenosis and IBS !  This is an enormous revelation to me as no doctor has ever made that connection and I have been an IBS sufferer since the nineties.

However, dangerous as the op was back in those days, maybe being around two months old helped… because I WAS given general anaesthetic!  (Thank heavens!!)  Plus, I have not only survived to tell the tale – I realise after some of the horror stories I read on the site that I must have had a “Super Surgeon”  because my scar is neat, small, pale and has never given me a second of bother throughout my life.  And this includes two pregnancies.

The writer's right-of-midline scar from the 1951 operation to fix her PS

The writer’s right-of-midline scar from the 1951 operation to fix her pyloric stenosis

In fact, although I don’t recall what age I was when I first noticed my scar, I do remember that it was while my mum was dressing me one morning – and I’ve a feeling I could have been about six, but the memory plays many tricks so I suppose I could have been anywhere between four and seven!  And it wasn’t the scar itself that caused the memory but the fact of mum saying so calmly as she explained I’d been operated on as a baby: “You could have died.”  A sentence which, of course, has impact on any small child.

Grandma time02Looking back over the years, whereas my parents weren’t secretive and answered all my questions over the illness as best they could, I honestly don’t recall being able to put a name to the condition until the seventies when my lovely, lovely gran died.  A strong memory I DO have is of her once telling me that as a baby the scar seemed to reach from my neck right down my upper body!  But that it duly shrank as I grew.  However, it was at the refreshments after her burial that I came into conversation with her G.P. who immediately proclaimed, “Oh, that’s Pyloric Stenosis”.

Now my parents (both sadly passed now) were intelligent, well-educated people for the times, but I honestly do believe that in the fifties all parents/people were told very little from medical staff.  Doctors were put on pedestals and tended, sometimes, to talk down to people.  No internet meant one was dependant on encyclopedias (which we always had in the house) but they didn’t list everything and were out of date within a few years.  Either way, I can see from the blog that it wasn’t just me that wasn’t told many details… the forties and fifties were indeed an era of “get on with it”; that’s what we were told and that’s what we did!  Other memories I have are being told, “you are lucky to be alive”, “you must have a strong constitution” (which I have!), “it’s a condition that occurs mostly in boys… very unusual for girls” and mom saying: “I used to spread newspapers all around before I fed you, in preparation for the fountain “!

Yes, I was bottle fed, though that is a story in itself… my mother had tried to breast feed me (in fact was forced to in the prison-like hospitals of the fifties!) but due to inverted nipples she was not very successful and suffered much pain trying.  She did once tell me she was sometimes brought to tears by a most awful ward-sister who refused to allow her to bottle feed me!  Therefore, she could not wait to get home (they kept women in for a whole week in those days!) and use formula.  Now, an ancient memory has just come to me while writing that last sentence!!!  The formula she used was the brand called “Cow and Gate” … I can even remember the shiny red tins !!!!  Obviously this is not a memory from my babyhood but four years later when my sister was born and I would be “helping” mum prepare her bottle.  Amazing!  I can almost smell the lovely creamy milk powder!

But to get back on track… it’s only now, in retrospect, that I can link things up, as throughout my life I’d never met anyone, or spoken to anyone, who has had this condition. Luckily neither of my children (one daughter, one son) inherited P.S.  I’d been told it was rare, and that is certainly what it seemed to be until I read your site, Fred.  I was amazed and enthralled and spent hours reading everything… and absolutely shocked to learn that some babies were (still are?) operated on without general anaesthetic !!  This is barbaric… surely if I was safely anaesthetized in early 1951 there is no reason to shun it with all of today’s technology!  Remembering too, that I was not in a fancy London hospital but in one in Stoke on Trent – I only wish I could remember which one!  However, writing this has inspired me to try and find out… who knows if the records go back that far but it will be fun finding out!

What does resonate of course, in retrospect, is that it is little wonder that our parents couldn’t help or tell us more when they themselves were probably told next to nothing, as was the norm in those days.  As it was also the norm to “get over it”, “put it to the back of your mind” – what we would call nowadays, “Blocking it Out”.  In that era they would not have been allowed to be traumatized (was that word even in the dictionary back then?) as even veterans from WW2 weren’t treated for such a condition.  It was simply still unknown!  Therefore, I can’t help but wonder whether there would have been a kind of stigma attached to “bearing an unhealthy child” or certainly a guilt complex, mainly to be carried by the mother : did she do “something wrong” during pregnancy, during the birth, or even afterwards?  They probably did feel that there was a “finger pointing at them” whereas that wouldn’t be the case nowadays.  Well, not in most of Western Europe anyway.

I can’t help but realise now, as a mother myself, (albeit of 2 healthy adults) how worried, upset, stressed and devastated my mum must have felt with things going so badly with her firstborn.  She was, after all, only 21 years of age at the time!  Yes, she had the support of my father and her own mother, but it cannot have been easy.  It probably needs to be said here that she went on to have three more healthy children, my sister and then my two brothers. Hence, they did not have P.S.

Woman happy01Let me end with a big thank you to the unknown surgeon who not only kindly had me not only anaesthetized but “properly sewn up” so that I never had a problem or complex about my scar.  Of course, the difference being also Fred, that being a girl my swimming gear would always cover my scar as a child (I was sorry to read how much trouble yours caused you) and by the time I got to “bikini age” (around 16/17) it was hardly noticeable and almost forgotten!

Yes, I was Lucky !

Advertisements

3 thoughts on “Pyloric stenosis: a good news story

  1. Wendy

    Great story. Thank you, Fred, and thank you to the author of the PS story. What’s great to hear is that the author’s parents were not only NOT secretive but not overly dramatic about giving her information about her PS operation. Yes, the ‘you could have died’ message was intense, but it sounds like it was not delivered in a frightening way. They gave her information to help her understand, not to panic her. I also appreciated the part about the stigma. Yes, I’m sure in the 50s, the blame was on the mother and there was shame associated with having a sick baby as in one isn’t being a good mother. In fact, a mom may have even been made to feel that she was a bad mother. Again, thanks so much from a pyloric stenosis survivor of 1952!

    Reply
  2. Fred Vanderbom Post author

    Wendy, my apologies for leaving it so long to respond: I’ve been footloose again!
    You won’t be surprised that I’ve often thought of you and myself when I was working on this story. It is even closer to you than to me… As you know and tacitly tell us, it is so different from your and my experiences (as well as others’ we know), in terms of both the technicalities of the surgery and after-care, and the way our parents dealt with their pain and ours. And yes, there must have been a lot of parental reflection and introspection (and no doubt more) that we never heard about. It’s been a real joy to pass on this “good news” story as it’s also a part of the total picture.

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s