One of the things that so often angers me as a survivor of infant pyloric stenosis (“PS”) is a key assurance that doctors so often give the parents of these babies (as reported by them) and so common on information websites –
If only it were true!
While this is promise may be true for the majority of sufferers (and please note: “may be true”), it is at least a gross generalisation.
The facts are –
- Web forums such as Patient UK and Topix, several blogs devoted to this and related subjects (see the Blogroll to the right), and online social pages such as Facebook include people’s accounts of unhappy experiences.
- In 17 years of researching this subject area online, I have not found even one substantial medical research report on the long-term effects of PS and the pyloromyotomy (PS surgery). There have been several small and narrow studies based (say) on 10-15 years of following-up those having surgery in a particular hospital, but many of the problems people have are much more long-term and yet seem to be linked with the condition and/or operation.
- It is significant that my 2011 post on this topic is the 6th most read on this site. A total of over 50,000 visits hardly represents the majority of the world’s PS people – but it’s not a trivial sample either. More than half of my 160 posts to date have given significant attention to this subject: interested readers can find them (and their titles) by clicking on the “long-term effects” tag to the right. These 86 posts include some written about my own struggle with the long-term effects of PS and the operation I had in 1945.
A post I wrote recently surveyed much of this subject, under several sub-headings. This post will restrict itself to a somewhat more personal “take” of how others and I have been affected by PS.
As mentioned in recent posts, post-operative adhesions may affect seriously only a small proportion of those who have had abdominal (and other) surgery. I have corresponded with survivors who are afflicted with adhesions and I have found their stories heart-rending. Everyone develops adhesions after PS surgery, but if they trouble you, the pain, complications, untreatability, side effects and uncertainties are almost always never-ending.
So why does the medical profession dismiss the documented and significant risk of adhesions as “a minor risk” when in most cases PS surgery can be avoided? Why aren’t parents empowered to understand and work through the facts and make their own choice? Why do information sites and powerful medical staff so often and/or effectively present surgery as the only real choice?
Post-traumatic stress disorder
PTSD is another area of known risk that is shrugged off by the medical establishment (including its training, practice, policy, research, publications, administration, etc).
I know and am grateful that much more is known and done about PTSD today than in even the fairly recent past. But knowledge does not nearly always translate into knowledge-based practice, especially when any degree of self-interest is involved.
In Australia we plan to spend 4x as much on the centenary of a World War I conflict (Gallipoli) as we’ll spend over the same 4 year period on the support and rehabilitation of our military who have returned home from recent scenes of conflict with PTSD. In some countries and circles, male and female circumcision are still routinely or commonly practised, both with and without analgesia (pain control).
Even when parents follow this practice for religious or family tradition reasons, it is inexcusable to dismiss the use of pain management. To many outside the USA, it seems there may well be a link between the prominence of emotional and physical violence in US society and the prevalence of male circumcision. Who can know how much depression, home and public violence, suicide and other signs of dysfunction are the result of PTSD recognized or unrecognized as caused by infant surgery?
It is not hard to trace the link between my PS surgery in 1945 and the relatively mild PTSD that has dogged me for much of my life. Most infant surgery past and present causes a lot of trauma:
– the condition itself and
– the all-too-frequent effects of tardy diagnosis,
– the desperate needle-sticking and perhaps a cut-down to establish an IV line,
– awake intubation,
– separation from parents,
– pain and
To this we must add the relayed effect of what most parents tell us was their most traumatic experience ever.
Until the late 20th century, most of these factors were magnified: especially the maternal separation and hospitalization lasted for weeks and sometimes months. To this we must add: awake surgery with a paralysing drug and intubation, often without even local pain relief and the “comfort” of a sugar cube laced with alcohol.
All this would not matter if we could still maintain today that “babies do not really feel and certainly don’t remember pain” – as many did until the 1990s. But in 1987 Dr Anand proved that to be nothing more than wishful thinking, and much has changed since then – but far from everything that needs to change.
Again: how can doctors today maintain that the surgical remedy for PS is free of long-term effects? Why aren’t the issues around this condition and the surgery considered responsibly and parents given the missing facts?
My personal story
Not for a moment have I ever thought that everybody who has had PS and/or infant surgery will have struggled as I have. For many years I dealt with my troubles alone, but with the coming of the internet I have been able to link up with and learn from others with the same past – and all kinds of stories of their personal journeys.
Like some and unlike others I grew up in a secret world of –
- self-obsession (I’m sure I wore out a few mirrors and certainly wasted loads of time),
- self-injuring (I learnt a lot and am thankful I did myself no lasting harm), and
- searching libraries for anything to explain my scar and what caused it.
- I discovered that I was fearful of especially doctors but also of anyone I regarded as in authority, and became passive-aggressive, internalising my anger.
- Although I have functioned quite well in my work and relationships I am also known as the sole reserved, introverted reclusive in my immediate family of seven and even my extended family.
- I love the water but at the pool and beach I never felt able to relax and enjoy myself except actually in the water. For many years when out of the water I would keep my arms tightly folded to hide my scar from curious eyes and tug my shorts or swimmers up to my chest, forever annoying my mother who kept reminding me that this looked ridiculous – which I didn’t really care about as much as…
- I lied, denied and pleaded ignorance when people did ask me what “that” was on my belly or what my scar was from. I avoided phys-ed classes at school, sports and overnight camps which involved changing or showering in public, and my face blushed and heart raced whenever I heard any of a short but telling list of words.
In one of my earliest posts I wrote at greater length about how I feel PS and my operation have affected my life. Whilst I have learnt that I’m not typical it’s also been reassuring to discover that I am not unique and a freak. This is just one of the reason I urge parents considering surgery:
“Spare the knife and don’t spoil your child!”
And to any PS survivor “with issues” I say:
“Shit happens, but don’t let this spoil your life!”