In my previous post I explored the horrible old mantra that “babies have no brain and therefore will not feel or remember pain”.
When I was just 10 days old I had my first surgical operation, for a pyloric stenosis (“PS”, a blockage at the stomach’s outlet) which occurs fairly commonly in between 2 and 5 baby boys and about one girl in every 1,000. In 1945 (and for several decades after this) the trauma easily caused by what is today regarded as simple surgery was not understood –
- the operation was often done without a general anesthetic, sometimes even without local pain control because of the major hazards and possible side-effects of each;
- hospital stays after such an operation were routinely 2 weeks;
- in hospital sick and recovering babies were routinely separated from their mother to reduce the danger of infection and they were fed on bottled milk;
- the effects of these practices on the infant’s parents were usually discounted and masked by a code of silence, which often made them even more toxic in the long-term on parent and patient.
- What I have outlined here has had a lifelong effect on me, and most likely also my parents, although they maintained their silence to their deaths many years ago.
One effect of this on me has been a lifelong and obsessive interest in PS and infant surgery. In recent years what I have learnt and continue to learn has been channelled into teaching and advocacy for the a list of “issues” around these two subjects –
- What is PS and how was it treated yesterday and is it treated today?
- Can surgery for infant PS be avoided?
- How can PS and its surgery affect the infant’s parents?
- How can they affect the patient in the immediate and long-term?
- Why is the diagnosis of PS often so frustratingly delayed and what can be done about this?
- How can parents deal with the problems babies frequently have after the operation?
- How can PS survivors deal with some remarkably similar problems that all-too-often arise in adult life?
- Do babies feel and remember pain and other trauma of their pre-verbal stage of life?
- What are the symptoms of PTSD that seem linked to early infant surgery, and what therapies and programs are available to those affected?
- Since gaining access to the internet in 1997, I have learnt much about all the “issues” listed, from websites, blogs, social forums, and some valuable personal interactions and friendships that have resulted.
In 2015 I plan to continue sharing and interacting with the PS community via this blog, as well as on several social forums, notably the various Facebook Groups committed to offering support, sharing information and raising awareness about PS.
Greatly improved support for parents, good pain management, new surgical techniques that much reduce disfigurement, and short hospital stays are now standard. Parents may also remark that there seems to be a slowly growing change in the medical professions’ awareness of PS and their attitude to PS parents: less professional paternalism, arrogance and conceit. Changing social attitudes and better education in medical school seems to be germane to this.
However, it is also quite clear that we are far from being able to “move on” and go fishing!