My parents chose not to deal with my questions about the pyloric stenosis surgery scar on my belly when I was a child. I believe they were too traumatised, but they passed it on to me. Their silence affected my relationship with them so that I never raised the subject with them again in my adult years. How sad and how foolish of me, I think now.
By adulthood I was well on the way to self-educating myself about pyloric stenosis, anesthesia, surgery, and other medical matters, although (as expected) this happened from a childish start. At first I really thought that –
- the fine but slightly raised incision scar was a piece of string caught under my skin – and I tried several times to dig it out like I would a splinter;
- the hollow dimple left by a drain near the top of this scar was a brown birthmark;
- the pockmarks left by the stitches and other OR gear that got me through – these just mystified me.
- And I experimented (and self-injured) to try to learn more about this mysterious part of my body.
My punch line here? Parents of infancy-scarred children, please manage any trauma memories you have after your baby’s sickness, shelve adult humour, stop procrastination and whatever else may hinder you from answering your child’s deeply felt questions openly and sensitively.
Sure, I would never have imagined at age 6 that the strange white pattern on my belly was from having been sliced open once upon an early time because my internals needed adjusting, and that I’d then been sewn up like a baby-football. But it would have been better to learn this from my loving and also-wounded parents than by working it out for myself. So share the painful story, but also your great relief and lasting gratitude because your dying child became a survivor. And: invite your child to come back to you again and again with more questions.
When I read other pyloric stenosis (“PS”) survivors’ accounts of how they managed becoming aware of their infant surgery it always strikes me how different we all are. Some children seemed to need little or no help; other kids were helped very well: they were told simply and factually what had happened, how it had been life-saving, and how fearful and then thankful their parents had been. But too many like me were met with silence or evasion. Some were traumatised by adult humour in the form of fanciful and often cruel stories. Some (by their own accounts) gave their scar no attention and wondered in later life what caused it. Others again were given very misleading information by parents who didn’t seem to have the ability to understand and explain what really happened.
As I’ve written in another post, I needed to know – even obsessively so. I love puzzles and I’m still learning and fascinated by the bits and pieces that come together as parts of my Surviving Infant Surgery story. Let me mention here what has particularly struck me in the 1980s journal articles I’ve collected: information that has helped me to understand and embrace the quite tidy but long-hated scar from my 1945 surgery.
Infant surgery is incredibly complex.
Even fairly common and essentially simple procedures like pyloromytomy (the lancing of a small swollen muscle) are incredibly complex and dangerous until the necessary knowledge and skill come together.
1 The diagnosis is all-too-often managed sloppily, resulting in totally unnecessary trauma for the parents and the baby, and sometimes irreparable and long-term damage to the little patient. But when PS is not suspected and not present in the family tree, its symptoms typically take a few days or even weeks to form a clear picture.
2 During my younger years I felt like a freak because my hard-to-hide stomach scar seemed to me unique – even the school doctor didn’t seem to recognise it. In fact it is far from unique, but I’ve learnt that even in the 1940s surgeons could have used any of 3 or 4 different incisions to get to my murderous muscle. The medical world has strong opinions about technique (not unlike Toyota, Ford and GM buyers) and tends to work with and perfect what it’s been taught. Several reports I have read dismiss the supposed benefits of any one incision as compared with other options.
3 There is a similar diversity of opinion about the value of medical treatment for PS, about anesthesia and pain control (or even the lack of it in some antediluvian quarters), about wound closure and about the importance of the patient’s feelings about the final appearance of the scar.
All the above has become increasingly clear as I have worked through the medical world’s studies, findings and discussions of the 1920s and since. Take as an example this summary of the findings of London surgeons in 1984:
No significant difference in the incidence of wound failure could be shown between 46 paramedian and 50 transverse incisions. Those [adult] patients who were considered to require a vertical incision were randomized between median and paramedian incisions. No significant difference in wound failure rates between 39 median and 40 paramedian incisions could be demonstrated. No advantage or disadvantage of a transverse over a vertical abdominal incision or of a paramedian over a median incision could be shown in this study.
[For the terminology in this citation check a previous post.]
This next report, from London’s premier children’s hospital, considers the longer term effects of the incision chosen for the 1980s PS baby:
A vertical incision should be avoided because the scar becomes increasingly obvious as the child grows, especially if a paramedian incision has been closed with tension sutures. The skin of the hypochondrium in the infant migrates superiorly and comes to lie over the lower chest in the adult, so an unusually high transverse subcostal incision in a neonate may give rise to an ugly thoracic scar in adolescence. Wound dehiscence after pyloromyotomy used to be fairly common…, and remains so in those undergoing operation under local anaesthesia.
Chemistry was never my best subject at school, so a Review published in 1987 on the anesthesia of 350 PS Irish infants (but currently only available in summary form) won my deep admiration and respect for those who have devoted themselves to the safe relief of pain and suffering when surgery is needed. This Dublin team wrote about PS:
Bennet (1968) and Touloukain and Higgins (1983) have described the complex electrolyte and metabolic disturbances which occur in this condition, and which stem from the loss of hydrogen, chloride, sodium, potassium and water in the vomitus. Initially, the kidney compensates by excreting sodium and potassium bicarbonate, but when hypokalaemia and hyponatraemia supervene an acid urine is produced, aggravating the hypochloraemic hypokalaemic alkalosis. A compensatory respiratory acidosis is usually present. Lactic acidosis secondary to hypovolaemic shock occurs in severe cases. These starving infants are prone to hypoglycaemia.
Although the management of this condition has improved considerably, some published series show a small but significant mortality. No patient died as a result of congenital hypertrophic pyloric stenosis or pyloromyotomy in this hospital during an 8-year period in which 350 pyloromyotomies were performed.
Not every reader of this blog will be as interested as I am in the material included in this post, but I trust you now have a better idea of the complexity of what has often been called “simple” and “elegant” infant surgery. If you have lingering doubts, do read more by following the links or contacting me.
This material when compared with the medical journal reports and issues of the 1920s, ‘40s and ‘60s also makes clear that medical science, and infant pyloric stenosis treatment in particular, have made enormous progress. My planned reviews of some of the available articles from the two most recent decades will show that progress continues on several fronts. I am grateful for that ongoing improvement and what it means for recent PS survivors.
Knowing something about why and how I came to be a PS survivor has made a big difference for me.