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.
- My 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.
- PS 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.
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.