Tag Archives: pre-verbal memory

An email from Sarah

A hardly-known fact is that many of the people who had surgery in infancy before the 1990s were not given a general anesthetic, and of these not everyone was given pain killers.  This awful fact has understandably been kept out of the public domain as much as possible, which was not very difficult before the advent of the internet and social media, but it is now reported and conceded by many.

frustrated01Giving a general anesthetic to infants in the first two years was too complex and risky for many doctors until the later 20th century, and because locally administered painkillers affect the tissue around the incision, many surgeons chose to have their infant patients simply intubated (given an artificial breathing tube down their throat) and then paralysed. It seems parents were rarely told the details of what infant surgery involved, and probably chose not to ask. After all, the life of their new treasure was at stake. Can we blame them?

Most medical students accepted the mantra that “babies do not feel or remember pain” and so surgical procedures ranging from circumcision to abdominal and chest surgery were often done without pain management – and without much further concern.

Several of my posts have been about the huge change forced on the medical establishment by the research, writing and advocacy of  Drs K J S Anand and P R Hickey since 1987.  (You can find these posts using the “Categories” Search-box at the top right.)  Together with their work, it also became clear that many who had had early surgery without pain control had struggled (usually lifelong) with post-traumatic stress.  The late Dr David Chamberlain, the late Dr Louis Tinnin, Dr Robert Scaer and others have studied, published material on pre-verbal memory and trauma, and developed therapies to treat PTSD arising from infant trauma caused by abuse, surgery, and tragedy.

One of the links most relevant to these matters is to the blogsite Restory your Life, published by my friend and blogging colleague Wendy P Williams.  Her blogging has concentrated on what has been written about PTSD after infant surgery, and on therapies that have been developed and found helpful.

But there is always more to be said and explored on this subject area.

This past month I received an email from Sarah, which I pass on with minimal editing –

blog-writing1Firstly, just wanted to say thanks for your great blog.  I have found a lot of reassurance and inspiration.  My infant trauma was different, but as you know there’s not a lot of info out there, especially written by people who have experienced it, so it’s been so helpful.  Also I’m sorry for what you went through and how it was (not) handled.  It’s great that you’re helping to make things better for babies now, I hope that also gives your young self some comfort.

I found some more stuff and you may already have it, but thought I’d send it just in case you haven’t.

The first is the book The Trauma Spectrum by Robert Scaer.  It has a really great chapter on pre-verbal trauma.  He also points out similar things to you about infant pain management.  It’s ridiculous to think babies wouldn’t feel pain.

The second is an article by Dr Bruce Perry, How we remember.  It’s about infant sexual abuse, but I think the principles are the same.

The third is a PDF written for caregivers of traumatised children and infants.  It’s by Dr Perry too.

Fourth, a book called Transformative Nursing in the NICU: Trauma-Informed Age-Appropriate Care by Mary Coughlin.  Can’t afford it and haven’t read it, but it looks like something all medical professionals helping infants could really use.

People think I’m kind of weird when they find out how much I think and read about trauma, so it’s sort of nice to ‘meet’ another person who has handled theirs in one similar way.

Well, keep up the excellent work, I wish you all the very best.

 In response to my emailed thanks and response, Sarah replied –

Of course you can pass my email on, and put on your website.  It’s the least I can do to thank you for your very much appreciated blog.  Thanks for introducing g me to Wendy’s blog, I really liked the artwork.  It was interesting hearing a little more about how you found healing, I somehow imagine a lot of us are big readers.  The networking is such a good idea, I’m glad you eventually managed to find more people.

I found another book, it’s called Pre-Parenting: Nurturing Your Child from Conception.  The relevant bit is about how even foetuses have consciousness, memory, feelings and other important things.  It has some amazing stories of very young kids accurately telling their birth stories when they learn to talk.  Interesting to think about what he’s written in the context of infant trauma.

Thanks and best wishes to you too.

Shhh02I had infant surgery to relieve a fairly common and fatal stomach blockage (pyloric stenosis) in the dim, distant and tongue-tied past; in 1945 most people didn’t talk about unpleasant matters.  So I know almost nothing about the operation and associated matters and had no help in coming to terms with their consequences.  It has taken me much of my lifetime to piece together the puzzle parts that tell me that whatever happened to me (and my parents) resulted in the clear symptoms of PTSD (albeit mild) with which I have struggled until recent years.

PTSD which results from something that happened in our infancy is lodged in our pre-verbal memory.  This makes it more complex and much harder to recognise, understand and treat than traumatic events which we can consciously remember.

Sarah’s emails and the references she has shared here underline that people struggle with PTSD caused by all kinds of events which they have remembered pre-verbally (in their “somatic” or body memory).

Sarah has also reminded me that all those affected by infant trauma share similar feelings and frustrations, and can draw on the same interpretations and treatment of our symptoms.

And finally, Sarah’s reference links make me feel encouraged that there are always more people than I had known about or imagined working to bring healing to those of us affected by trauma of infancy.

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Pyloric stenosis then and now

Medical science has made huge progress in the past century.

  • If I had been born 30 years earlier my infant pyloric stenosis (“PS”) would have given my parents a horrible choice: Submit your long-awaited 10 day old firstborn son for major and horrific surgery (probably without an anesthetic) that killed around 75% of babies, many of shock, blood loss or infection – or see your little one die of thirst and starvation.
  • Modern medicine01My father suffered from mild diphtheria and tuberculosis – diseases that are now virtually unheard of in developed countries.  My family is thankful that Dad does not seem to have been seriously affected.
  • One of my grandmothers was almost blind for the last decade of her life and although my father was able to have his cataracts removed, it meant several days in hospital and wearing thick and heavy glasses for the rest of his life.  My eye problems were solved with three day-surgery procedures: a retinal detachment restored 95% of sight in that eye and my 2 cataracts were replaced by lens implants that make life much easier than having to wear glasses.
  • My mother-in-law had 4 children, then suffered post-natal depression and never recovered, dying at age 90; in this sad and dark condition she had another 5 children.  My wife and I have been able to manage our fertility and enjoy life as well as loving the family we planned.

The several PS Groups’ Pages on Facebook and other internet forum sites (e.g., BabyCenter, MedHelp, PatientUK, and Topix) make it clear that even today, the distress of having a baby with PS does not always end after the scabs from the surgery fall off.  Even in adult life, the long-term effects, although not universal, can be inescapable and extremely troublesome. But just think of the changes from what PS and its surgery were like when the older readers of this post (and their parents, most now passed on) experienced it…

  • General anesthesia, especially for a baby and even today, will always carry a small risk and may still be found to have long-term effects, but it is nevertheless always used and widely regarded as very safe.
  • breastfeeding1PS babies undergoing surgery no longer suffer maternal deprivation: the danger of infection is usually well-managed and hospital rules and staff are no longer as severe as they were.  Mother and baby only need to separate for only an hour or two.  In my case in 1945 it seems to have been some 2 weeks – and both Mum and I continued to feel it.  Today almost all babies can be held and nursed almost immediately after they recover from the operation, and most are cleared to return home within 2 – 3 days.
  • Single port pyloromyotomy scar

    Single port pyloromyotomy scar

    Surgical techniques have improved vastly.  PS surgery once involved an incision which left a scar that grew to an average of 10 cm (4 inches) and usually became quite indented and puckered.  The wound was closed with sutures that left significant additional dimple scars.  No wonder many of the generations who were disfigured by their life-saving surgery took years to come to accept their scar – if ever.  Single port laparoscopic surgery for PS has now become “best practice”: all the work is done through one port (or tube) which is inserted through the navel, and if it is well done and under the right conditions this leaves no visible scarring.

  • Parents and PSers now have access to information, networks and therapies that can help them to understand the physical long-term damage and the psychological and emotional effects that are possible after infant surgery.  When fully effective treatment healing is not possible, the availability of the above help and support will still give many benefits.

This blog, like many of the parents and adult PSers who subscribe to the online forums, wants to see PS becoming more quickly recognised more often, its immediate and long-term after-effects better understood, acknowledged and managed, and not a small number of the medical profession having a much better (more respectful, informative and honest) attitude to PS parents and patients. But I also want to take note of and celebrate the progress that has occurred in important aspects of this condition… in my next post.