After infant surgery – untangling the emotional baggage

Shmool Roey 1612Last December my wife and I welcomed a friend and film-maker from the US.  I worked with him on a documentary he is making on a subject of common interest to all of us – the effects of infant surgery done when it was widely believed (esp. pre-1990) in the medical world that babies don’t feel or remember pain.  Yikes!  Yes, really.

My friend has interviewed several of us who had infant surgery in the “dark ages” and he is now recording interviews with several professionals who have written about or provide therapy for people affected by pre-conscious but unremembered (“somatic memory”) trauma.
We hope the result will be available both as a documentary film and on Youtube mid-year.

Watch this space for the launch date!

150414-057Soon after my birth in 1945 I narrowly escaped death by starvation by having a surgical operation when I was only 10 days old.  I had pyloric stenosis (or “PS”, a blocked stomach).  I’m sure the trauma affected my mother, and this in turn affected me, added to by the rudimentary way infant surgery was often done until the 1990s, plus the maternal deprivation that was part of 1940s hospital routines and infection control.

Confused06I grew up struggling with demons I didn’t understand and of which my parents were largely unaware. I had had infant surgery… many years ago.

If you have had PS and are troubled by ongoing issues you suspect or know are related, you may want to reflect along with me!  A little background will help …

Only in the 1950s did some doctors begin to specialise in pediatric (infant and child) surgery and pediatric anesthiology, and only much later still did this and advances in medical technology see the development of anesthetics, anesthetic management and surgical techniques that are safe for infants in their tenderest first two years.  I have posted that Dr J Everett Koop in the USA was an early pioneer in this.

Body memory02Only in the late 1980s did a few brave people in the U.S. medical community dare to address the commonly believed mantra that “babies don’t feel or remember pain”.  Among them, Drs K J S Anand and P R Hickey explored the facts and then available information and challenged the established beliefs and practices.  The late Dr David Chamberlain wrote articles and books about the infant mind and memory.  And the late Dr Louis Tinnin amongst others developed therapies to help survivors of crude early surgery to recognise, manage and overcome the post-traumatic stress that could result.

In recent years I have been able to connect online with many who have been affected by the old-style infant surgery like I was, and I honour and thank those researchers and doctors who have done so much to give us the present safe and usually fairly damage-free ways of treating infants who need early surgery.

Thanks to the work of the above people (and others like them) I can now understand the mysterious, unsettling, embarrassing and scary inner struggles with which I’ve had to live for most of my nearly 70 years.  Only in the last ten years has the light and help given by these heroes and spread via the internet been moving me towards healing and inner emotional peace.

Here are some of the “issues” with which I struggled –

  • All my life I have had an overpowering and insatiable obsession with the 10 x 3 cm network of scars on my belly and the operation it represents.  I have posted about this obsession which has troubled me in a list of ways, some private and worrying, some quite public and embarrassing.
  • For my first 20 years I was afraid of hospitals and all my life I have had passive-aggressive problems with medical people and to some extent with anyone in authority.
  • Since the dawning of my self-consciousness I have had a deep “need to know”, to understand in some detail what this strange galaxy on my belly was and what exactly happened to put it there.  When my parents fobbed me off I went to books, libraries and bookshops, and much later there was the internet.
  • I was often upset by visitors’ curiosity about my scar, my parents’ stonewalling whenever I asked them about it and my PS story – while I overheard them talking with visitors about this page in my life!
  • Certain words and seeing certain things were triggers that made my heart jump, made me blush, and funnelled my thinking to that first medical problem and procedure I had.  I have posted about some of my triggers.
  • Digestion problems seemed to affect me more often than others in my family.  Even in that way I seemed to myself to be different.
  • It became clear to me that my mind wasn’t as good as my 4 siblings’ was, that I was less well coordinated and confident than they are, and that I was regarded by my parents and others as rather sensitive and easily put on the defensive.

Memory05I’m far from being a rocket scientist; it nevertheless became clear to me that much if not all of these frustrations were linked with my first illness and surgery, and I came to suspect the last two might well be too, as I found medical reports that linked PS and its surgery (pyloromyotomy) with them.  Very early starvation can damage the baby’s developing brain, including intelligence and motor coordination, and PS survivors and their parents frequently report any of quite a list of abdominal complaints, including vomiting, irritable bowels and reflux, confusion over hunger or feeling full, and discomfort to severe pain often suspected as being caused by adhesions that had developed within from the scar.

Many of my posts on my other blogsite, Surviving Infant Surgery (SIS), discuss these matters.  Interested readers can find them by clicking on the link and then using the “Categories” search box at the upper right of the SIS page.

A family reunion I enjoyed with my four siblings in 2014 enabled me to flesh out some of the above.

  1. We discussed our gastro-intestinal behaviour – among many other things of course, but yes, we did!  We found we had remarkably similar problems with diet, GI problems and necessary food cautions.
  2. This does not take away my gastric challenges but puts them in a wider context: it is well-known that PS is caused by high gastric acidity and quite often both these have a hereditary element, affecting more than one baby in a family.
  3. So my mild gastric problems are caused my PS and it seems are not its result, nor that of the surgery.
  4. I continue to believe that compared with what I see of my family’s gene pool, my very early days of starvation seem to have somewhat affected my brain development.  However, I also recognise that PS survivors are represented on the full range of the emotional, mental and physical spectra!
  5. Especially two of my grandchildren have come to remind me very much of some of my own emotional architecture.  While happy to do things in public they hate with a passion situations where they feel “exposed”: having their named called out in a school assembly, being asked to pose for a photo.  They are emotionally sensitive, and clearly “people people” but can also be so focussed (or obsessed?) that we wonder if they are at the low end of the autism spectrum.
    Seeing these kids grow up shows me that some of my “issues” seem to have been caused by a combination of some of my personality traits and unhappy (even traumatic) remembered experiences that arose from my PS scar.
  6. This leaves the first three items on my earlier list as totally or largely unexplained except by the fact that some others with PS in their past have reported similar signs of trauma: obsessions, sensitivities, passive-aggressiveness especially towards authority, and “triggers”.

PTSD 05The specialists in medical science, psychiatry and counselling I highlighted above, together with others who have worked on this, are able to tell us that indicators such as the ones I have mentioned are (or can be) symptoms of PTSD.  PTSD has been long recognised in a relatively small group of people (usually war veterans) but was usually brushed off as “too bad, be glad, you’re a survivor”.  Only in recent years has PTSD been taken seriously, explored and much better understood, and as a result it is now better managed and treated.

The coming of the internet has made it possible for people to network and sPTSD 03hare territory they have in common.  Much that was previously ignored is now shared, explored and explained.  I have learnt so much about my lifelong discomfort with aspects of myself!  I know now that my “secret inner self” is well within the bounds of what is normal after early surgery in a now hopefully bygone age.  I no longer have to worry about being weird or unique.  Others share and understand my pain and yet have lived a pretty normal life, as I have in fact!  I have been carrying the symptoms of mild ptsd, and counselling and therapy could reduce them but will never remove them.

Mind untangling01So I can join those of a more outgoing and confident spirit and carry and leave my scar visible with some pride: I am alive today because I’m part of the history of surgery, I’m grateful to God that I was born at a time when I could benefit from this, and I enjoy being part of the community of PS and other infant surgery survivors.

And though I have missed out on certain gifts (how I sometimes long for a quick mind and body), I’m also grateful for the gift I have to explain things clearly, simply and patiently.  In my senior years all this has come together in my blogging and online participation in the interactions of PS survivors, which I’m glad to say is regularly met with what is clearly heartfelt appreciation and thanks.

– Fred Vanderbom

Advertisements

Author: whatwewishwedknown

Joint Bloggers - explaining, exploring and discussing issues around pyloric stenosis and other infant surgery, especially as done pre-1990 and much in need of far greater awareness today

1 thought on “After infant surgery – untangling the emotional baggage”

  1. Wonderfully satisfying. You covered a lot of ground here! A lifetime of material, condensed into a readable and clear account for many to tap into in a comfortable way. Such rich material you’ve provided with all the links and references. I was very moved by your mention of the community of people with whom we have become united: the survivors of pyloric stenosis and all other infant surgeries. We share experiences that solely belong to us and unite us. Of course, each of our journeys is unique; however, we have much in common, which is relieving and gratifying. As you mentioned, we are not weird. What we have felt made sense in the context of those early surgical methods and understandings mid-twentieth century, and we have had to live with inner turmoil. Thankfully, we can now reach out to others in expanding this community, offering our friendship and understanding and the wisdom of a lifetime’s experience–as you have done with your post. Thank you!

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s