Past Pylorix Pages – Pyloric Stenosis treatment in the 1990s (1) – minimizing the scar

The obvious scar from pyloric stenosis (PS) surgery when I was just 10 days old caused me much grief from the age of 6 and for many of the years of my growing up after that.  It has also become clear to me in recent years that many symptoms of PTSD came with the old surgery and its effects on me and my parents.  I have been working through the PTSD issues as best I can.  As for the scar front and centre on my body, I believe most of us with a scar we find embarrassing eventually come to accept and even feel proud of it, although for me this was a long time coming!

Reassuringly, with the advent of the internet, I discovered that I was far from unusual in wanting to hide my belly scar, hating people’s looks and questions, and feeling “different”.  Nor was I alone in having PTSD after infant surgery, and in seeking to manage it.

Like this young man I struck a very defensive pose whenever I felt "exposed"

While some young people could be light-hearted about their scar, even telling unlikely and imaginative stories about how they got it, many wrote that they hated it with a passion and that they or their parents had looked into the possibility of scar revision surgery.  However, some also mentioned a degree of ambivalence: they were able to recognise their ugly scar as “the” mark of their survival and thus an essential part of their life story.

Infant surgery over the years has often triggered PTSD, but that’s a subject I’ve written about earlier on this site.  It seems clear to me that if my scar had not been as large and obvious, my parents’ part in causing my PTSD would have been negligible or non-existent.

How can the scarring from infant surgery be reduced?  The first move towards this emerged just before the 1990s.

On the web, there are several statements of what surgeons might or should regard as their chief considerations when they cut and sew a patient’s body, and I found it sad but also understandable (considering the “scientific” and “dispassionate” way too many medical people are wired up!) that only some of these surgeons included in their short list the emotions of the patient about the scar that would result from their labours.

I am grateful that minimising scarring became a real consideration in pyloric stenosis and other kinds of surgery during the 1990s.  In 1986 Drs K C Tan and A Bianchi of the Royal Manchester Children’s Hospital published their technique to remedy PS through an incision made in or around the umbilicus which upon healing would become quite or almost invisible.  They reported:

Forty infants with infantile hypertrophic pyloric stenosis had a Ramstedt pyloromyotomy through a circumumbilical incision.  Delivery of the pylorus was relatively easy.  Mild wound infection occurred in three infants and a further child developed a purulent discharge.  There was one instance of abdominal wall dehiscence and all the resultant scars were hardly visible, thus achieving an apparently unscarred abdomen.

Ever since then, the merits and hazards of the Tan-Bianchi pyloromyotomy have been debated in infant surgery circles, and several cautions and modifications have been published.

Follow-up surveys made it very clear that parents of PS infants approved of the cosmetic improvement, and in one survey medical doctors overwhelmingly stated they would choose a Tan-Bianchi pyloromytomy for their baby if necessary.

However, there are two main difficulties with the Tan-Bianchi technique.  First, the pylorus is located quite a way north of the umbilicus, and bridging this distance through a small incision can easily result in damage to particularly the incision area and/or the stomach.  The second hazard is caused by the umbilicus hardly being a tidy and clean area from which to open the abdomen, and so this technique has come with a marked increase in abdominal and wound infections.

The first problem has been addressed by minimally extending the incision at the umbilical site in any of several ways, some of which do not cancel the cosmetic intent.  The infection hazard is best reduced by very careful disinfection before making the wound.

A very tidy umbilical pyloromyotomy scar after 7 years

A 2008 survey of Italian patients and parents the previous 16 years found a 100% satisfaction rate with the Tan-Bianchi pyloromyotomy technique; 90% of a panel of assessors ranked the scars as excellent or good.

The Tan-Bianchi pyloromyotomy technique and modifications of it are widely used today, and together with laparoscopic (minimal invasive surgery) are respected, effective and favoured when compared with “open” surgery which is still acceptable in far too many practices and hospitals.

As I grew up I came across a few people who had survived PS which was treated medically without surgery.  I felt so jealous of them, but since then I have learnt that in my case, medical treatment would probably have resulted in my death from the condition.

If I could not have escaped the operation and if a less disfiguring and stressing option had been available in 1945, who would not be 100% sure that my parents and I would have accepted it regardless of various hazards and degrees of difficulty?  And this would have reduced the trauma also.

Roll on, less disfiguring and minimally invasive surgery!

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5 thoughts on “Past Pylorix Pages – Pyloric Stenosis treatment in the 1990s (1) – minimizing the scar

  1. wendy williams

    That “very tidy umbilical pyloromyotomy scar” is unbelievable. I am jealous of it. One could never tell that that baby had ever had surgery! Just last night I inadvertently noticed my paramedial ps scar in the mirror and was shocked, not recognizing it at first. I was some distance from the mirror and saw what looked like strange bars across my upper abdomen. Each time I glimpse my scar, I have a different reaction. I rarely feel acceptance and gratitude. I wonder how different my life would be today if I had had one of those “tidy” scars.

    Reply
    1. Fred Vanderbom Post author

      Wendy, I’m sure that shown a photo like the one I posted, all of us with the disfiguring scars of earlier years will feel jealousy and a few regrets that we weren’t born in a later era. But as you say, our feelings and thoughts vary and are complex.
      Overall, I am very grateful for the many age-related experiences that have enriched my life, and for the fact that I wasn’t born before 1912, when the death-rate from PS was tragically high.
      Having said that, I feel particular outrage at your scar which I believe must be even larger and more obvious and disfiguring than mine. Technically successful surgery but poor care and people-skill from your surgeon.
      But you are a survivor, and more: you’re winning!

      Reply
  2. Mark

    It seems we focus a lot on our scars, and that may seem odd to others. But to us, as a young child, it was the undeniable proof that something BIG happened to us. For those of us with PTSD issues, the scar was the reminder we could not make disappear. It was the core of many of our greatest fears. It was the mark that prompted the uncomfortable questions from others. It was the reason we were different from others. It was the scar’s fault that we could not romp at the pool with our friends. All sorts of emotionally charged negative feelings centered on that damn scar. Many of those feelings persist even though we, as adults, can intellectually balance out the emotion with facts and mature understanding. But after a lifetime of self programming, it is hard to learn to just accept our scars like any other imperfect body part, a nose that is a little to big, an mole in an unfortunate location, or hair that will not behave. To be honest, outside of getting itchy sometimes, my scar has never caused the least problem for me. I still dream of what life might have been like if i had not had been burdened with it.

    Reply
  3. Fred Vanderbom Post author

    Everything you have mentioned and explained here is 100% true of me also, Mark, including the dreams, and it will therefore apply to countless others also. The scars from even the earliest and most roughly done pyloric stenosis operations/surgeries are relatively small compared with the scarring from the repair of (say) Hirschsprung’s Disease, an omphalocele, or a diaphragmatic hernia. But if a child is affected by confidence or self-image damage or by PTSD, it seems to matter little whether the scarring is major or fairly minor.

    Reply
  4. Pingback: Scar acceptance « Stories from the Survivors of early Surgery

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