Surviving infant surgery – why some do so in pain

Many who have had infant surgery spend considerable time and emotional energy hating their scar and trying to hide it.  Like many, I spent many hours in front of the only full-length mirror we had at home in the 1950s.  Like some, I started punishing my body and exploring the scar over my stomach (from pyloric stenosis surgery) before I was 10 years old, and did this for at least 15 years after that.

Some infant surgery scars are hard to hide – or hide all the time.  I think I grew up as a fairly normal boy in most respects and situations, but shrivelled into deeply emotional and instinctively feral behaviour when I felt threatened by having my one and only imperfection exposed!

Yet I’ve been surprised to find that many others who have had the same or more major surgery as babies grew up with the support, skills and confidence that enabled them to handle their being damaged with dignity, appropriate maturity, and sometimes even good humour.

I’ve often wondered: why the difference?

The most significant factors I can think of are temperament, trauma, and parenting – and these are usually related.  Let me explain.

Temperament

My Myers-Briggs personality profile is one I have the honour of sharing with “greats” including Queen Elizabeth 2, Charles Dickens and St Teresa of Avila.  But it also made me vulnerable.

I’m introverted – what goes on inside me matters more to me than who and what is “out there”.  It’s helped me be considerate and aware of others’ feelings, but it also means I find it hard to get over myself and see the big picture.

I am sensing rather than intuitive.  In the Myers-Briggs grid this means I want facts, not feelings, and to understand rather than depend on vague underlying truths – like trusting my parents to answer my questions “when you grow up”.

I am a feeler rather than a thinker.  Don’t bulldoze me with reason, facts and rules; rather let me feel you empathise with me and then help me to weigh up all the facts and get into harmony with my situation.

Finally, I tend to judge rather than perceive.  According to Myers-Briggs this means I tend to be stronger on empathy than logic.

Every theory or grid has its value as well as limitations.  My personality profile has helped me to understand why I clashed with my parents, and especially my strong mother!  It also helps me to understand why I was so deeply affected by the stonewalling by which she became integral to the growing problem I had with my infant surgery and scar, these taking on the dimension of trauma stress.

But my character profile also helps me in two other ways.

First, I realise now that it would have been impossible for my mother to help me: how many parents in her times (the 1950s) and her circumstances (1) knew what we can know today, and (2) have the skills to help their child-with-an-issue?  I love Mum, feel sad that she went through so much because of my illness and surgery, and am grateful for her undoubted love, skills, and commitment.

Second, I have come to understand why I reacted so strongly and damagingly when my questions weren’t dealt with well, and my feelings of shame continued to build with each curious look and question and beach trip.  I have written about this in previous posts.

Trauma

What I have mentioned above and in earlier posts caused what I have come to recognise as post-traumatic stress.  PTSD results from many different causes and comes in various levels of intensity.  I am glad I never had suicidal thoughts but I certainly self-harmed.  My symptoms were very clearly linked with my infant pyloric stenosis surgery and my parents’ difficulty in helping me to deal with that.  The symptoms were only sometimes noticed by others but were with me almost as long as I am aware and affected my enjoyment of life in specific situations.  I have never been able or felt free to seek professional help – and wish I could have!

Parenting

What I have mentioned here and in earlier posts should make it abundantly clear that my parents’ inability to help me was also a major factor in why I am among those who (apparently unlike the great majority) have few or no lifelong pain resulting from their infant surgery.

Your take?

I would value Readers’ response to what you have read.

  • If your infant surgery affected you, how did it?
  • What are the reasons it affected you?
  • What has helped you to manage your “survival”?
  • Any other comments?  Feel free!
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5 thoughts on “Surviving infant surgery – why some do so in pain

  1. billover70

    Fred,
    Anything contributed from here claims no authoritative basis in psychological, spiritual or sociological expertise. What is offered is only as a witness relating to personal experiences and persuasions.

    From an earlier sharing, you know that I have sustained very minimal negative effects subsequent to the PS experience.

    With that said:
    1. I stand here in a state of thankfulness for that surgeon and other professionals who extended my life past that 1st month to the point of now approaching 80 years.
    2. The scar is certainly still there, but I must consider a question. How much has the scar affected the career I enjoyed, the woman I married, the friends I made or the progeny with which I am blessed? The answer is a resounding, “ZILCH !”
    3. Should any one approach me with sympathy regarding my misfortunate physical condition at birth or the physical appearance of the scar, I would thank them but then glory in the blessings received in spite of those infirmities.

    There is a philosophical expression which came to my attention a few years ago. The title is “The Bottom Line”. Therein, someone (can’t recall the source) pretty much condensed and put into words some of my personal persuasions… Too long for here, but I’ll share sometime.

    Reply
  2. Fred Vanderbom Post author

    Thanks for your comments, Bill, which are valid. Much of what I blog is indeed personal and subjective stuff, and as I point out in this and other posts, it arises from my make-up and life story.
    But there is also a factual thread in my writing!
    I often wish I could have a say and even some involvement in research into the long-term effects of infant surgery, but I must be content with passing on what little and rather selective work has been done. In Comments here I am not able to give links, but in my posts there are many references and links to some of what has been written.
    In brief, the reported research is largely of a “scientific” and technical nature, and much of it repetitive. There has been almost no study of the long-term physical and other effects of elective surgery (like PS and circumcision) on infants, and what has been done has not cast the net very widely. Any search of the web will confirm this. I agree that the issues I and others are advocating could be regarded as a Pandora’s box and “not of scientific interest”, but this narrow view is endemic in the medical professions and causes much distress to parents and “survivors”. Again, the web confirms this. It also keeps our psychiatrists and psychologists busy as well as detracting from the general health and well-being of our communities.
    As I wrote here and previously, most who have had infant surgery know and care little about it – and as you say, are rightfully thankful for that, and I with them!
    However, as I’ve also written, my and some others’ usually private pain agrees with the findings of the past 25 or so years, that the old and majority picture of infant surgery is more complex than most had realized and some even today seem to maintain. The main references are permanently on the right of my pages.
    Having said that, I repeat that there are many reasons I too am deeply thankful, and not just on Thanksgiving Day. It’s true that also my marriage, family life and work have been very little affected by my early surgery. If only this were generally true… and my own private experience prompts me to stand with them and I trust to help add some clarity and healing.
    I look forward to reading your “personal persuasions”, by personal email if it must be, although I’d like to see posted them here so that all our readers can benefit and respond.

    Reply
  3. Wendy

    My pyloric stenosis surgery at 26 days old affected me in many profound ways. I was dying and operated on at 4 pounds, having lost 2.5 pounds, and this registered in my psyche. Mom complained so about the stress of the operation that I decided I was a burden baby–a bad baby–and was always trying to prove to my family that I was worth saving. No baby or child should have to live this way. My scar was shameful and my mother often told me how she was sorry that with time, “it was stretching.”
    I believe that had I had a more calm mother who was supported by the medical community, my experience would have been less horrifying. Truly though, she did her best.
    I have post-traumatic stress disorder from the operation and have had panic attacks, somatic stress resulting in jaw and teeth problems, recurrent nightmares as a child and difficulty sleeping, and extreme shyness due to my status as “sick” or “alien” or “other”. I am able to manage my PTSD better now that I am aware of its symptoms. What has helped me manage? Psychological therapy, writing, Middendorf Breathwork (somatic bodywork), the internet, and the constant love of a devoted partner. That I am alive is a miracle as I began consciously trying to deal with my ptsd and psychological difficulties in my twenties. Before that, I was plagued by unconscious re-enactment (trying to resolve the trauma by recreating many aspects of the original trauma), self-harming, a few suicide attempts, risky behavior, and anger issues.
    I think that there are many people who, due to having been hospitalized as infants for a variety of reasons, are trapped in mental hospitals or halfway houses or are victims of addiction and other self-destructive behavior. We act out and don’t know why and end up in trouble in society.
    Here’s the thing: Shame corrodes and fear annihilates. Many of us are still in prison. I am grateful I slipped the key from the jailer’s pocket and am making my way out of the prison house. People like Fred help me know I am not alone, that I am sane, and that change is possible.

    Reply
  4. Fred Vanderbom Post author

    Thanks for giving us something of your PS and PTSD story here, Wendy.
    I don’t think I’ll ever understand fully why it is that just some of us have had so much trouble with our story, whilst it seems clear to me that the great majority haven’t… really haven’t. I could never have suppressed my feelings about my surgery, scar and what came with that, and I have never heard from anybody who did try but then “came out”.
    In this post I have tried to explore my temperament, which I suspect is a factor. You have mentioned both our parents’ struggle to accept and help us… you and I aren’t the only ones in whose stories our parents figure prominently. And then there is that folder of medical, psychiatric, other professions’ and media articles that have opened the books on the deep and lasting effect infant trauma can have on the subconscious.
    All this certainly fits what you, I and others have endured through no choice of our own.
    It seems to be hard for people like Bill (see the Comment above) to give much credence to our stories, and his response is not unusual, I have found.
    The challenge for us is not to be dismissed as morbidly preoccupied PS ghetto lovers, nor to overstate our case, but to continue to write and speak in such a way that we will be heard.
    In the mean time it is heartening to read the responses from people who have found either or both our blogsites, and feel understood and reassured that they’re not malingerers or loopy!

    Reply

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