For most of my 65 years I have known that the operation for pyloric stenosis I’d needed at the very tender age of 10 days would affect me for the rest of my life.
Before the age of 6 I was not troubled by looking slightly “different”: my mid-belly scar was very prominent and simply part of me. In fact I have several photos of me in the little swimsuits Mum made for her foursome which framed my scar quite nicely for the world to see. Perhaps this would help me to grow up a flaunting extrovert?
About the time I turned 6 all that changed and Mum made me a special “cover-all” swimsuit. I had become embarrassed about people’s looks and questions; my parents ducked my questions about my scar while answering those of adult visitors to our house. My being different began to bother me.
My pyloric stenosis became an obsession. I felt I could not escape my powerful feelings and odd behaviour, and I knew they were not normal – although to those around me I seemed normal. How could that be? A deep-seated fixation had been created, a secret world of obsession and feeling guilty about this; I was going to absurd lengths to avoid people seeing and asking about my scar.
Fast forward to the 1990s. The internet has enabled me to find and network with people who have had similar lifelong anxiety as a result of their surgery in early infancy. What a liberation to realise that although I still could not understand most of the pieces, I was not alone.
I became a web-surfer and have collected thousands of pages of material: medical journal articles going back over a century, medical research reports and abstracts, blogs and web-forums, photos and diagrams, personal stories and humorous anecdotes – all this about this galaxy of subjects of special interest to me.
This mountain of material has connected other dots in the puzzling parts of my life story.
• Post traumatic stress (PTSD) can affect us from birth, with a raft of lifelong effects ranging from sensitivity to stress to suicidal feelings.
• Until recent decades surgery on infants was typically extremely stressful. It was widely believed that infants do not suffer from pain and that they have no memory: this is a myth, convenient but false.
• Added to this, infant surgery until mid-century involved a long separation from the mother for fear of infection, usually total and for at least 2 weeks.
• Malnutrition (as usually occurs with pyloric stenosis) has a marked effect on cognitive learning and motor coordination.
I have been affected and strangely but truly comforted by especially some of the articles I have read.
Dr David B Chamberlain has written and spoken widely to challenge the belief that babies don’t remember pain.
So has Dr K J S Anand.
Recently an eminent retired academic, practising psychiatrist and trauma counsellor has opened his own blogsite about this subject. Dr Louis Tinnin’s first article? Infant Surgery without Anesthesia.
Dr Tinnin’s blog about the symptoms of the special kind of stress that can arise from infant surgery ends with a list of 10 questions. These questions help those of us who have had early surgery (particularly before about 1986) to recognise the life-long symptoms of anxiety (constant nervousness and spells of terror or panic), hostility (temper outbursts and urges to smash or break things), depression, self-consciousness, distrust of others, and a high vulnerability to stress.
These questions have connected several more things I have suspected and struggled with. Look out for me to write about these in future posts. The questions fit me like a glove (except the one on suicidal feelings) and will also guide a knowledgeable therapist and form a basis for initial discussion.