We survive infant surgery in our own way (1)

This blogsite’s lifeblood is to be found in the many questions which many infant surgery survivors have.  Questions such as –

  1. I have always had this body scar – why did my parents never tell me about what happened to me?
  2. Is there a link between my stomach problems and the surgery I had?
  3. Will I pass this condition on to any of my children?
  4. Why have I battled with PTSD symptoms as long as I can remember?
  5. If my baby also has my condition can we avoid the surgery I had – or even just the scar?
  6. How will my infant surgery scar affect my pregnancy?  Can it be removed by plastic surgery?
  7. Why are there so many stories about slow diagnosis and babies having surgery only “just in time”?
  8. Why is so little research done (or available) to answer questions such as these?

One of the questions that has long puzzled me is why my pyloric stenosis surgery at 10 days old affected me in such a deep and complex way whilst others seem to have none of these problems.

Today I read this Comment from a later-20s woman on the Experience Project’s forum on Pyloric Stenosis –

i used to make up crazy stories about my scar… in kindergarden i told them that’s where a monster almost got me… but i battled him and chopped off his head.  of course it was super descriptive how little kids with big imaginations tell stories.  i guess looking back it gave me a sense of being a bit tough.

Wow!  I so admire that self-assurance and extroversion!  And at such a young age!  A four-to-five year old who is able to convey such confidence and inner strength!  I feel so envious… if only I had had even just some of that kindergarten confidence!

At that tender age and even today I could hardly have been more different!

When I started school I was doing absolutely everything imaginable to deny having my belly scar and to avoid talking about it.  I would cover it with a shirt, my crossed arms, my swimming trunks pulled up to my ribcage… preposterous behaviour.  When I couldn’t hide my blemish I would crazily deny I had it with totally transparent lies.  I was completely incapable of even a milligram of a sense of humour and proportion.  As for an air of confidence that might allow me to delight in others’ reactions to me and my stories…

Even on my honeymoon I was careful as to how to pose!

Even on my honeymoon I was careful as to how to pose!

So why the huge and life-affecting difference between people with the same basic story, at similar ages and in similar situations?

My years of reading, reflection and interaction with others affected have led me to the following conclusions –

  1. We humans are not all the same: despite many similarities our bodies, minds, emotions and experiences greatly affect who we are and how we travel life journey.  And many of us find it hard to understand and respect our differences.
  2. Those who have had infant surgery have had widely different experiences which their minds do not remember but which may nevertheless have affected them profoundly.  This makes it difficult to establish a link between physical and emotional symptoms in later life with early-life experiences which are likely unrecorded, forgotten and summarily dismissed.
  3. The mantra that “babies don’t remember pain” (or other forms of trauma) has only been scientifically debunked in recent decades, and is still clung to in many medical minds and institutions.
  4. Trauma affecting a small baby can easily trigger and/or increase damaging attitudes between the growing child and its parents; any or all of these people may suffer continuing dis-ease over the early surgery and what came with it: a distressing condition that may have affected mind and body, obvious pain which has been constantly denied, maternal deprivation, and a choice of medical complications.  This complex and damaging interaction will not always be a factor, but when it is, it also may be difficult to recognise openly and treat.

I am very thankful that my long and painful personal journey seems to have included a great reduction of my PTSD symptoms.  But it is not hard for me to accept that not everybody has experienced the degree of healing I have: in various situations my old emotions and responses return to the surface!

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2 thoughts on “We survive infant surgery in our own way (1)

  1. Wendy

    I was very moved and saddened by that photo. So telling! Thank you for including it. Seeing it confirmed so much for me. Your holding your body in a self-conscious way is representative of the emotional pain you were in. It’s a subtle move–to keep your belly out of the photo–but the wound inside is not subtle. We often become prisoners without even realizing it. As a survivor of PS surgery, I often find myself holding my right shoulder in a locked position. Due to the pain of the surgery, I learned to hold my breath in order to minimize the pain, which rigidified my shoulder and upper back. To this day, I find myself holding my body in this tense way and have to release it. I’m so glad that you have found freedom from some of the PTS symptoms. Freeing ourselves is so important. Thanks again for your brave sharing.

    Reply
  2. Fred Vanderbom Post author

    Thank you, Wendy, for your understanding and perceptive comments. You are so right: I well remember the emotional and physical rigidity I assumed most of my life whenever I felt threatened… by what? There was no serious external threat, but the trauma I’d been through as a baby was continually making me avoid any risk of further exposure.

    Reply

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