Pyloric Stenosis and avoiding the knife (1) – the trauma

What’s the most traumatic thing you have ever experienced?

Here’s how some four in every thousand new parents have answered this question… just check the stories on the web.

More importantly, just imagine this was you.

You have just given birth and the gift life to your own child – a mother or father for the very first exciting and beautiful first time.

She or he looks so beautiful, everything is just right, so perfect.  Your family features to smile about, your pride and joy to crow about, and your own body and love have given you this child!  Birth is almost always a wonderful thing, even in less than perfect circumstances, and even when giving birth itself is very hard work.

But then try to imagine this: your beautiful baby starts to puke, only a week or a month old, more than what you know is right, and over some days the vomit becomes more frequent, more violent, more ugly.  Baby immediately wants another feed, with the same result, only worse, and day by day she starts to not only act but look desperately hungry … perhaps even haggard.

Your doctor at first dismisses all this: “Just remember you’re a typical first-time mother, try to adjust your feeding routine, sit baby up, smaller but more frequent feeds, ra, ra, ra.”  You go home unconvinced, even more frustrated, perhaps a bit angry.  You feel that somehow, motherly instinct knows better than dear doctor.  You do some googling and discover that “pyloric stenosis” fits your sick baby, exactly.

So, not happy, but back to the doctor.  A grudging OK for some tests… a positive result.  “Your newborn has pyloric stenosis.”  The prescription?  Baby needs a day in hospital on an IV line to be rehydrated and prepared for surgery.

And then you meet with the surgeon and the anesthetist: all kindness, much sympathy, lots of professional reassurance: “Only a small surgery, just a tiny incision, the stitches will be invisible, the scar won’t grow with your child, in fact it will soon disappear, very, very few risks, no deaths, and then… no more problems, ever: baby’s pyloric stenosis will be fixed for life and there are no after-effects.  Please just sign here

You suspect (rightly) that some of what you were told is not true.  But what do you say?  Doctor seems to have all the answers, as she should.  But does she?  What else can you do but sign?  Baby’s life is clearly ebbing away.

A few days later and you take your baby home.  And every diaper / nappy change, every bath-time you have to see this…

baby w IHPS scarYes, your first child has survived and will now live to grow up… and this is his or her life-saver badge… for life.  But hey, “Don’t worry about that!  “Chicks love scars”, and one day he will be able to boast, I was stabbed by a crazy on Main Street!  I was speared by a swordfish!  I was gored by a Spanish bull!

Photographer Sarah Pagano's poignant image of a baby after PS surgery (posted 10 June 2013) earned her website many more hits than she'd ever had.

Photographer Sarah Pagano’s poignant image of baby Jesse after his PS surgery was posted 10 June 2013 and earned her website many more hits than she’d ever had.

Unfortunately, that’s nothing like how you feel as you admire your beautiful baby.  You can’t forget the sight of your baby hooked up to those IV tubes – in his ankle, his armpit, his skull.  You stare at that red raw scar and wonder if what your baby has gone through will have any other lasting effects.

You know some people who are never lost for a smart answer, but you’re not one of them and know you’d hate to grow up with a scar like that.

And for some parents the emotions are white hot.  Your baby’s surgery wound is not tiny at all, and the scar looks angry, terrible …

Baby IHPS surg wound messyWhy couldn’t I get my baby a better surgeon?  If only I’d had the money.  Is this the work of a specialist pediatric surgeon or a butcher?  How would I feel with a “life-saver badge” as horrible as the one my baby will have to live with?  Could there have been another way?  Why wasn’t I told?  Why didn’t I stand my ground?

Next post:  What most doctors don’t know (or won’t tell you) about your pyloric stenosis baby.

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4 thoughts on “Pyloric Stenosis and avoiding the knife (1) – the trauma

  1. wendy williams

    What a riveting post! So creative, informative, powerful and horrifying. You really capture the experience as if you were a parent going through it yourself. Amazing! The photo of the one pyloric stenosis baby was bad enough but then that butcher-job! Oh my, so unnecessary and so wrong. Gotta rush on and read the next installment! Thank you.

    Reply
  2. Fred Vanderbom Post author

    Thank you Wendy for your enthusiasm about this post. I too felt very deeply about this subject and it was not hard to convey my message, drawing on the harrowing stories countless parents have posted. These have helped me greatly in recent years to understand why my parents would never answer my questions or tell me my story. And I decided it was fitting to let some of the pictures such parents have posted add to my talking, as “a picture is worth a thousand words”. True indeed.
    But this post needs its sequel! Most parents of pyloric stenosis babies can have a choice … although they may have to do their homework, demand to be heard and be able to work with their doctor. A tall order perhaps?
    We live in hope.

    Reply
  3. jimmy

    I had PS as a baby too. The pictures my mum showed me scared the shit out of me and I certainly feel lucky to be alive. Whenever I am ungrateful or sad about something unreasonable, I refer back to these pictures and do more research on PS. PS can kill, and I am lucky to be alive. Oh btw, Great story!

    Reply
    1. Fred Vanderbom Post author

      Thanks Jimmy for your appreciative and personal feedback. Many of us with a PS history will consider you lucky, not only to be a survivor but also to have had parents who made and kept photos and were willing to tell their story, to share their fears and distress. They made it possible for you to have answers and to “own” your story. Discovering in recent years what my parents would have endured, especially as things were for them in 1945, my anger at being stonewalled and dispossessed has gone. Belatedly and after lots of unearthing, I have come to know as much as I can expect in the circumstances. We are indeed lucky to be alive!

      Reply

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