My infant surgery and PTSD

For most of my life I battled privately and secretly with what I have recently come to recognise are the symptoms of post-traumatic stress disorder (PTSD).

One thing I knew: that the weird and unwanted urges and emotions deep inside me were the result of having had pyloric stenosis (PS) and an operation to correct it as a baby.

But why the never-ending internal turmoil?  Many people my own age and older whom I knew had had surgery and it seemed to have no lasting effects on them.  As a young adult I got to meet a few people with a history of the same infant condition and surgery as mine… but did they feel the same inner pain?  It seemed not.  I saw no obvious evidence of the shame, embarrassment and inner anxiety that had tormented me for years – but I had kept this very private… as much as I could: my family certainly knew how I felt about the scar right in the middle of my belly.  But these other people-with-a-scar didn’t seem to find it a problem.  And being as shy as I am, I found it far too daunting, even unwise at the time, to ask.

As I grew up, I came to decide that my parents and my four siblings were different from me.  I must be unique because I alone was scarred, and hypersensitive, introspective and self-obsessed about it.  I tried to train myself to be more positive, confident and outgoing, but to little or no avail.

In adulthood I was helped by the safety of my secure marriage and my sensible family.  I slowly came to terms with my disfiguring and obvious abdominal scar so that I no longer hid and foolishly denied having it.  But modifying my inner emotional life and moving beyond the inner turmoil were another matter: I continued to battle with symptoms (albeit mostly mild ones) of anxiety, distrust and even hostility towards people in authority, self-consciousness and hyper-alertness about my scar and at the mention of certain words, and difficulty dealing with conflict and stress.

Although my family was 100% reassuring and accepting of me and of the very little of this anxiety and inner turmoil which they could see, I myself remained in the dark about the nature and cause of what only I knew was going on inside me, and thus hesitant (to say the least) to be more open about it.  I was a freak and just had to live with that, I felt.  My wife would have wanted me to get on with real living, and the few fellow PS sufferers with whom I tried to “connect” via the internet denied they had any problem, ignored me, or told me to get some counselling.

In 2006 I came across an invitation for people who had had infant surgery and their parents to get in touch if they had issues which might be the result of this part of their life story.  I responded and found someone whose struggles and symptoms were an almost exactly parallel to mine.  Three months of tremendously revealing email traffic added depth and reassurance that I might not be so unique, weird and lonely after all.

Three years later I read a brand new blog that once again resonated immediately and powerfully with my inner self.  Email correspondence once again confirmed that my experience, which whilst certainly not inevitable after infant surgery, was far from unique: once again I had found somebody whose inner struggles were largely similar to mine, and had in fact been even more scary and disruptive.

During the three years since 2009, my co-blogger Wendy Williams and I have discovered a growing list of people who reported or showed a similar story to ours.  Most declined to explore this and some tried but found it too threatening.  It left us wondering how many people with stress-type problems might be nursing PTSD of one kind or another.

We have also discovered journalists, researchers and therapists who have recognised and helped shed light on the possible traumatic effects of infant surgery.  Material relevant to this subject started to be published some 30 years ago by researchers and advocates such as Dr K J S Anand, Terry Monell, and the The New York Times (1980s), by Dr David Chamberlain (1990s) and more recently by Dr Louis Tinnin.  Interested readers are encouraged to follow the links and search the web for other relevant material.

Bloggers like Robert Clover Johnson, Jolene Philo, Wendy Williams and me (here) have unwrapped and explored the trauma and related issues that can result from infant surgery.  We are heartened by the responsive comments and contributions we have received, and realise that much advocacy and education remains to be done.

Much has changed for the better in recent years for those of us indelibly affected by infant surgery and its causes, methodology and after-effects.

  • Like others I have found that too much time has passed for me to discover the exact circumstances which gave rise to my PTSD: it seems medical records are destroyed quite soon, and my parents died long ago.  But largely thanks to the internet, medical information and journals have become far more accessible and these have enabled those interested (like myself) to explore and reconstruct much of our story.
  • The facts about long-protected secrets of the medical world (such as infant surgery without anesthesia and analgesia because “babies don’t feel or remember pain”) have at last come to light.
  • The workings of the human mind and the nature and causes of PTSD remain complex but are becoming increasingly well understood, and it is realised that trauma can affect not only returned military and disaster and accident survivors but also children and even infants.
  • Although I will never know the exact cause of my problems, I now realise that I could well have been affected by any of the starvation that PS brings, the surgical techniques employed (especially in earlier times), the two weeks of maternal deprivation normal during hospitalisation in my time, my parents’ own trauma which affected my ability to embrace my story, and my personal response to any or all of the above.
  • Understanding my story and my “freakish” inner pain, together with the formation of a community of those who share and identify with the trauma – these have been unimaginably reassuring and healing for me.
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6 thoughts on “My infant surgery and PTSD

  1. Mark

    Fred, as always I look forward to and appreciate your posts!

    Like you, finding another person to share “my big secret” has been tremendously therapeutic. After decades of fears, worries, shame, and tension, finding that there were others out there was a huge turning point in my life. I learned and believed for the first time that I was not a total freak, and felt a sense of inner security for the first time in 40+ years, a feeling that it might actually be all right to just be myself for the first time ever. For the first time in my life, I relaxed a bit. What a revelation that I could do that and survive!

    I am sure there are many people who read a few of these posts and scratch their heads and wonder what the big deal is. While we are happy that you are with us, please realize that the real purpose is to be here, standing up, and waiting for the very special person who has suffered deeply, struggled alone, and has searched diligently for a connection with someone who can understand.

    For that person, I hope you summon the courage to reply, join our conversation, and tap into the joint well of healing that we have as a group.

    Reply
  2. Wendy

    Fabulous post with so many resources! Very generous! I will include it in my talk at the medical school in Iowa this week. I also feel very affirmed by your mentioning me and my work in your post. Many thanks. Freaks Unite, is how I think of it. In uniting, we find we are not freaks at all but a part of the human family that has suffered. In a way, you and I are PTSD siblings. (Isn’t it great to have a name for what we have experienced?) Anyone who has had infant trauma and the PTSD to go along with it is becomes a member of the family. A strong bond results from sharing similar experiences. Mark, I don’t know if you identify as having PTS, but I love reading your comments and feel that we have a lot in common. Thanks for welcoming others who may visit Fred’s blog.

    Reply
  3. Fred Vanderbom Post author

    Thank you, Wendy, for the “family feel” of this response. It is true that whenever I’ve met somebody else who has had infant surgery (and pylorix in particular) we feel that sense of a shared experience and a common understanding immediately.
    I’m excited to see this family increasingly reading, writing and commenting on our blogsites.

    Reply
  4. Jared Cook

    Hello Mark, Fred, and Wendy,

    I had pyloric stenosis when I was born back in 1974 and I am convinced that I am still suffering as a result.

    I would love to do a ‘group chat’ if one is ever organized.

    Jared

    Reply
  5. Fred Vanderbom Post author

    Jared, I have written above about two things that have become clear to me:
    1) far from everybody who has had infant surgery is left struggling with the symptoms of PTSD;
    2) infant surgery has really affected some of us deeply: the psycho-somatic (mind, emotions and body) mechanism that is responsible for this has been quite well mapped now by people including those I’ve mentioned in this post. Why those of us affected seem to be a small minority is still not very clear to me. I would hope this will be researched soon.
    I have emailed you about a “group chat” and would very much welcome, even urge you to network with us!
    I would ask any reader interested in more contact to email me via the “About” tab at the top of this blogsite.

    Reply

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