Category Archives: Pre-verbal memory

Infant Surgery & PTSD – Links to Publications & Websites

Sometimes it is better not to know…

Some of those who owe their life to infant surgery in times past have become aware of the fact that safe and effective pediatric anesthesia and analgesia have only become almost generally used in developed countries in fairly recent years.

The medical mantra that “a baby does not feel, let alone remember pain” was widely believed and acted on in the medical world.  We can be thankful that many medical workers did nevertheless learn to work on infants using the available rudimentary anesthetic drugs and procedures. A powerful code of silence blanketed what was really happening and how widespread infant surgery without anesthesia was practised.

In 20 years of lay research and networking about this issue, I have yet to find a statistical report or journal article on the relevant facts and figures.  Understandably, parents were never told about the darker facts around their child’s operation, and those who dared to asked were most likely fobbed off – and certainly did not dare to share their concerns with their child in later years.

I have networked with an uncomfortable number of people who like me are grateful to be alive because of early surgery but have always been mystified by living with some of the symptoms of post-traumatic stress.

The medical mantras  about infants feeling and remembering pain were publicly challenged and steadily corrected only since 1987. I have written other posts here about this.

Here is a reading list for those who are interested in learning more about this matter.

Again: sometimes it is better not to know . . .

Inadequate pain management

New York Times – Researchers Warn on Anesthesia, Unsure of Risk to Children – http://www.nytimes.com/2015/02/26/health/researchers-call-for-more-study-of-anesthesia-risks-to-young-children.html (link)

Jill R Lawson, Standards of Practice and the pain of premature Infants – (pdf file incl additional articles) – http://www.recoveredscience.com/ROP_preemiepain.htm (link to Jill Lawson’s article only)

McGrath Patrick J – Science is not enough, The modern history of pediatric pain – Moderna historia dolor pediatrico.pdf – (file) – http://www.dolor.org.co/articulos/MOderna%20historia%20dolor%20pediatrico.pdf (link)

Pail’s Health Blog Nov 2010 – A Story of Babies in Pain and the Barbaric Malpractices of Medicine – http://www.theherbprof.com/blog/?p=66 (link)

Louis Tinnin, Awake and Paralyzed during Surgery – http://ezinearticles.com/?Awake-And-Paralyzed-During-Surgery&id=182472 (link)

Dvorsky, George, Why are so many Newborns still being denied Pain Relief? – http://gizmodo.com/why-are-so-many-newborns-still-being-denied-pain-relief-1755495866 (link)

 

Infant Memory

Chamberlain David B – CV & publications.pdf – (file)

Website – Birth Psychology – A Bibliography of Dr David B Chamberlain’s writings – https://birthpsychology.com/journals/volume-28-issue-4/chamberlain-bibliography (link)

David B Chamberlain, Babies are Conscious – (file)

David B Chamberlain, Babies Don’t Feel Pain – a Century of Denial in Medicine http://www.nocirc.org/symposia/second/chamberlain.html – (link)

Levine, Peter A, Waking the Tiger – Healing Trauma, North Atlantic Books, 1997 (book title)

Van der Kolk, Bessel, The Body Keeps the Score – (book & summary article title) http://www.franweiss.com/pdfs/sensorimotor_vanderkolk_1994.pdf (link)

Van der Kolk, Bessel, Brain, Mind and Body in the Healing of Trauma – http://www.shrinkrapradio.com/436.pdf (link)

Van der Kolk, Bessel, Developmental Trauma Disorder – (book & summary article title) http://www.traumacenter.org/products/pdf_files/Preprint_Dev_Trauma_Disorder.pdf (link)

Van der Kolk, Bessel, The Limits of Talk – http://www.traumacenter.org/products/pdf_files/networker.pdf (link)

 

PTSD from Infant Trauma

K J S Anand & P R Hickey, Pain and its Effects in the Human Neonate and Fetus – http://www.cirp.org/library/pain/anand/ (link)

The New York Times, 24 Nov 1987, Philip M Boffey, Infants’ Sense of Pain Finally Recognized – http://www.nytimes.com/1987/11/24/science/infants-sense-of-pain-is-recognized-finally.html (link)

The New York Times Magazine, 10 Feb 2008, Annie Murphy Paul, The First Ache, http://www.nytimes.com/2008/02/10/magazine/10Fetal-t.html?_r=1&ex=12 (link)

Monell, Terry – When Pediatric Surgery causes Permanent Damage.docx (file)

Dr Louis Tinnin – Infant Surgery without Anesthesia 130707.docx (file) – https://ltinnin.wordpress.com/ and https://ltinnin.wordpress.com/2010/12/30/infant-surgery-without-anesthesia/  (link)

Wendy P Williams – Are Your Symptoms due to Infant Surgical Trauma? – http://restoryyourlife.com/ptsd-post-traumatic-stress-disorder-dr-louis-tinnin-infant-surgery-without-anesthesia-pyloric-stenosis/ (link)

Wendy P Williams – Ten things to remember about pre-verbal Infant Trauma – http://restoryyourlife.com/preverbal-infant-trauma-preverbal-memory-emotions-sensations-breath-anxiety/ (link)

National Institute of Mental Health (USA) – comprehensive introductory brochure on PTSD – https://infocenter.nimh.nih.gov/nimh/product/Post-Traumatic-Stress-Disorder/QF%2016-6388 (link to brochure)

Ten things People with PTSD-related Dissociation should know – http://healthiest.pw/10-things-people-with-ptsd-related-dissociation-should-know/ (link)

 

Personal accounts

Kyle Elizabeth Freeman – Blogger at “Gutsy Beautiful Complicated”, Childhood Medical Trauma – 36 Years Later – https://gutsybeautifulcomplicated.com/2012/11/03/coming-to-terms-with-trauma-thirty-nine-years-later/kyle.elizabeth.freeman@gmail.com

 

N B – Chamberlain, Dvorsky, Van der Kolk and some others listed here have other material online and/or for sale

 

N B – this List is a work in progress

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Understanding ourselves after infant surgery trauma

Some personal experiences are hard to share.

We can relate to many of the personal experiences we hear about: by the time we reach middle age many of us have been through an illness or an accident; we have probably experienced childbirth (if not personally then as a very close and trusted family member or friend); the death of a close relative or friend also happens to everyone sooner or later.  We can identify fairly well with many such life events.

But deep trauma can be more difficult to understand.  If we have never experienced near death or serious abuse in one form or other, we can say, “Yes, I understand…”, but we don’t really to a great extent.  Those of us who have suffered deep trauma usually feel the need to find somebody else who has experienced something similar, or a counsellor who is trained to listen and help us.

In November 2014 I wrote a series of posts on professional doctors, psychiatrists and counsellors who have done ground-breaking work in helping patients and professional helpers to understand infant trauma.  Reading some of the key work of people like Drs K J S Anand and P R Hickey, the late Dr David Chamberlain, the late Dr Louis Tinnin, and others has been an “Ah!” moment of discovery and gratitude to people like me who have been affected by infant surgery (including circumcision) as that was so often practised before the 1990s, without general or even local anesthesia, using other crude, painful and invasive procedures, and with long periods of maternal deprivation.

ponderFor much of my childhood I was obsessed with a very obvious surgical scar in the middle of my belly, the result of 1945 surgery to remedy pyloric stenosis when I was just 10 days old.  From my parents’ ultra-scant comments, I soon came to understand this early episode in my life story was one they’d rather forget.  From the medical reports of the time which I’ve been able to read in recent years, I have learnt that infant surgical technique in 1945would have been basic, and it was followed by at least 2 weeks of isolation in hospital to guard against infection.

When my self-awareness awoke between the age of 5 and 6, I soon became obsessed with my scar, addicted to re-enacting what little I knew about my surgery in childish ways, and then to increasing self-harm.  It is not helpful or necessary to go into details here, but readers who have had similar problems and feel a need to find greater clarity, healing and reassurance should feel free to email me via the links at the end of other “pages” on this blog’s header.

Why I felt these deep and irresistible urges I did not understand for most of my life, but they troubled me.  I believe my parents could have helped me by (1) explaining my surgery and scar, and (2) helping, persuading, tempting and rewarding me to accept and feel proud of my story and scarred body rather than fearfully hiding it from public view.  But I also wonder whether the power of the trauma of my early surgery might have overridden anything anyone tried to do later!

VdKolkBessel 2015Last week our Australian national radio aired an interview with the US Prof. Bessel van der Kolk whose writings have recently been overviewed and quoted by my blogging colleague Wendy P Williams.  A New York Times article about Dr van der Kolk is also well worth reading.  Yet another article about van der Kolk’s work on infant trauma has been made available by those advocating an end to routine circumcision in the USA.

Dr van der Kolk’s website has links to his work, programs and publications, one of which at least is also freely available online and well worth reading.

Prof. Van der Kolk is undoubtedly correct in saying that trauma caused by events in childhood and in later life is causing a hidden epidemic of personal, family and social problems.  Only in recent years have childhood abuse and military service begun to be more widely recognised as often causing deep-seated and lasting damage.  Even now the military establishment often tries to deny or ignore the obvious damage done by PTSD.

Van der Kolk is also correct in his observation that the numbers afflicted by the trauma of childhood and later vastly outnumber those affected by the infant surgery and mass circumcisions of past years.

However, I have never yet heard of a study of the possible long-term effects of circumcision in the light of what van der Kolk and so many others (including the above trailblazers) have documented as the life-long effects of infant trauma.  Such a study may not make pleasant reading but would very quickly and certainly become “a barbeque stopper” and might even be a “game changer”.

Although Dr van der Kolk does not seem to have encompassed old-time early surgery in his work on childhood trauma, I can shout in my loudest voice that from what I have read, what he has written about the effects of childhood hurt is totally true of my journey after infant pyloric stenosis.  Thank you, Dr Bessel van der Kolk and others, for helping me to understand myself and find healing!

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.