Networking after pyloric stenosis (4): Emotional baggage

This post continues a series in which people who started life with infant pyloric stenosis (“PS”) and were usually left with a very gnarly or sunken surgical scar tell something of the psychological damage that came with that.  The social pages of Facebook include at least seven Groups of such people and the comments below are taken from these pages.

In their most formative years many PS survivors didn’t understand the reason for the surgical scar on their belly: their parents were perhaps embarrassed or reluctant to explain it because of their own inner pain over those pages of their life story.

Even during our honeymoon this pose shows how careful I was about showing my belly to the world.

Even during our honeymoon this pose shows how careful I was about showing my belly to the world.

When PS survivors feel shame about their scar, it’s typically because their personality is not extroverted and confident, and/or because they were not helped from an early age to understand the story of their PS and to “own” and wear their scar with pride and gratitude. Let’s face it, not many of like to be “really different”, and when we’re not helped to understand and appreciate the issues involved…

Here is the record of some of the emotional struggles PS’ers feel or have felt.

T B – c. 1990
I have gone through stages where I have become depressed over the scar left, however I think I am beginning to accept it more.  I’m an avid fitness enthusiast and weightlifter.  In saying this, I try to stay in shape.  However I still feel really uncomfortable taking my shirt off in public or around people I don’t know… the internet has made it easier.  It shows that there are “others” out there… I feel the scar is something I should be proud of instead of ashamed.

D C-S  1974
My ops were both in 1974, left me with a big zip scar down my front from sternum to belly button.  Wouldn’t be without it, but it has left me affected mentally and has left me with a variety of digestive tract issues.

Panama man

When infant surgery leaves your body looking like this man’s, only the very self-confident would ever feel at all comfortable

K D 1949
Gosh all your scars still look way better than mine.  I am 64, an old girl, and had it done at 12 weeks.  Huge vertical with big dots horizontally.  I’m in Australia and it is amazing to see how far surgery has advanced.  Have been embarrassed by my scar all my life and never wore a bikini.

J H 1962
I struggled with my scar for years… especially in school, sports, etc.  Always was embarrassed to take my shirt off, kept my arms folded, etc.  Now I’m proud of it and love to show it.
Growing up I used to be so embarrassed.  It’s something I had trouble overcoming… but finally did.

FV 1945
Because I had my op long ago when lots of the issues around it were pretty basic, I’ve had some emotional baggage, probably mild ptsd, shame and obsession for many years, now still in some ways an inordinate interest, although working on the issues and age have helped me heal inwardly.  Suspect there’s also some damage from the hunger and dehydration, as I lag behind all my 4 sibs in some areas.  But I’m glad I lived and don’t have the problems some have, esp. adhesions and serious bowel issues.

WW 1952
I’m 57 and had PS surgery at 3 weeks old and my mother told me that I never crawled.  I would only pull myself along on my butt.  (This behavior, I think, is very connected to the surgery.)  I did walk late, as I recall her saying.  For me, I think transitions have always been hard.  Safety is a big issue.  All my life, I’ve been a late bloomer.  For me, it’s definitely connected to the surgery.  I lost some confidence early on and doubted the power of my body.

parent-talking-to-childIt is noteworthy that most of these kinds of Comments are from people who had their PS surgery many years ago, when the surgical techniques were fairly crude and not cosmetically sensitive, hospital care was rough and ready, and parents did not know as much about child psych as we do today.  These Facebook comments are typical of other forum sites I have read.

However, the one comment (the first one) that is from a younger PS survivor shows that “emotional” baggage after PS surgery is not simply related to whether the surgery and scar were relatively recent or not. Again, many of us just hate being different.

These Comments also show that emotional, psychological and PTSD consequences can show up in different ways.

This series based on Facebook common interest sites also bears out that the medical alternative to treating PS surgically should be considered in every case – as it is in several developed countries.  This option like surgery is not always trouble-free, but will avoid most if not all the serious complaints and problems which fill the PS pages of the web’s forum sites.

During the 3 months after this post was written my wife and I were travelling, visiting family and friends and holidaying in the U.K. and Europe. My Facebook page records some of this wonderful and special time (accessible to Facebookers who “Friend” me).

This series of posts was continued soon after my return home.

5 thoughts on “Networking after pyloric stenosis (4): Emotional baggage

  1. Wendy

    Wonderful post! I was reminded about how horseshoe crabs saved me from being totally isolated and alone. To me, they were ugly like me with my scar. I felt we were in a club together. Horseshoe crabs covered the shores of the river beach where my family vacationed summers. They were round with large, dark, thick shells–not anything like the creatures we typically think of as crabs. They truly helped me as a child feel less alone. I had that TV antennae-looking scar on my belly, which set me apart from everyone, it seemed. That was an amazing photo in your post of a man’s stomach scar. My god, why did the surgeon have to make such a long incision? Maybe he was one of those general surgeons who rarely did pediatric surgeries. My heart goes out to that guy. Though my scar is not as big, mine is a smaller replica of his; we are in the same club definitely. Thank you, Fred, for reminding me that I am a member of an elite club of hardy survivors. I am part of life. About my entry (WW 52), I was afraid to crawl for fear my guts would spill out the PS zipper scar!!

    1. Fred Vanderbom Post author

      Thank you, Wendy, for adding these personal and clarifying comments. It may seem amazing to us now how lonely and freakish many of us old-timers felt with the TV antenna- (and later worm-) like scars on our bodies, but when we were young and for many decades after then, it was impossible for members of our “elite club of hardy survivors” to network. We were isolated and alone with our embarrassment, in our ignorance, and frustrated by our mysterious ptsd feelings and urges. Even now PS’ers tell us via the web that they’d never consciously met another survivor and how relieved they feel to find forum sites just for the survivors of infant surgery!

  2. Wendy

    Yes, PS’ers finally connecting is an internet miracle! For me, it’s been one of the most important happenings of my life. And you were the first miracle!

  3. Wes Hackbarth

    Back in 1966, I had a 50/50 chance of living. my scar is vertical, about a little less than 4 inches. My son born in 2002, had less than a 1 percent chance of dying. they went through his belly button and made 2 micro incisions on his side. TG for doctors!

    1. Fred Vanderbom Post author

      Thanks for adding something of your story to those I collected for this post, Wes. Yes, what a difference 40 or so years have made – not least to the range of medical procedures. From what you mention, your scar would be very similar to mine, and in the 20 or so years between us, there was little or no progress in surgical technique. However, changes were afoot elsewhere, and your son has benefitted from these: the genesis of pediatric surgery and anesthesiology as specialties, and a growing world-wide expectation that pediatric surgeons take the future well-being of their patients into account by giving far more attention to the cosmetic effects of their life-saving work.


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