Making a mountain out of a molehill?

Why spend my precious time reading, emailing and writing about my infant surgery for pyloric stenosis 65 years ago?  Some of my readers must ask this.  I sometimes ask myself this question.

Roey Shmool put the answer this way at a Conference on the effects of infant colorectal surgery in 2009:
If the fear and anxiety we feel as adults results from what we endured as children, then how do we lessen the burden for children and adults today?  (His excellent personal address is available on the web, and the interested reader may also like to see the trailer to a movie he made about several people’s journey with gastric, intestinal and rectal diseases.)

For most people, infant surgery is unknown territory.  For many of those touched by it, it seems to pass by causing only some temporary ripples.
But many parents found that seeing their newborn pride-and-joy very sick and submitting their baby for surgery is the hardest time they’ve ever been through, although they’re grateful when the outcome is good and they can put the trauma behind them.
Many doctors do wonderful work listening to and reassuring the parents, explaining the condition and the surgery, and doing the procedure with the care and skill they would expect if the baby was their own.
Many survivors of infant surgery may take a little time to come to terms with the mystery markings on their body and their even more mysterious explanation, but they are grateful to be alive, often without life-affecting effects.

However, there is a real need for all those involved in infant surgery to be more aware of how things can be better in what we all hope is only a minority of cases.  These blogs aim to open some chapters and give some people a voice about the possible problems that may occur when babies and infants need life-saving medical treatment.

For some years now I have collected people’s stories, medical information and relevant research reports (inasfar as these are freely available).  Below is a brief taste of just some of the issues.  Feel free to comment or to contact me about the sources.

Sloppy diagnosis and arrogance –
My … son and myself had this.  My son was finally operated on after I refused to leave the hospital until they found out what was wrong – and lo and behold, it was exactly what I had told them 3 months before when he was vomiting constantly.  His case is now under investigation as no blood test etc had been taken during his other hospital visits – 22 in total.
And this –
I was born with PS and my second child, a son, … was diagnosed with it at 4 weeks.  Luckily, having had it myself, I was well aware of the odds of my child having it, especially a son.  The pediatrician as well as the ER wasn’t extremely willing to diagnose PS until I advised them that I had also had it. … Prior to that, I got quite a bit of attitude and snubs.

Sloppy parenting –
…my family never told me I even had a surgery as an infant until I was 18 years old, let alone what it was. … The only thing i hope is Jacob [her son who also had PS surgery] won’t be sensitive with his belly like I am.

Sloppy surgery –
I don’t think my parents were ever under the delusion that my scar would fade.  It’s pretty big compared to a lot of the other ones that I have seen.  My mother even admits now that it “wasn’t done very well”... –
And this –
my husband’s surgery was not a cosmetic surgery.  The surgeon was not thinking of minimal scarring…  Therefore, he didn’t utilize a stitching technique that minimizes scarring.  Secondly, the surgeon was lousy at stitching.  [This doctor] said that the reason my husband’s scar looked as it did was a reflection of the surgeon, NOT the surgery.

Traumatised parents –
As a baby my husband had pyloric stenosis… He was born 50 years ago and there were no good anaesthetics for babies, so at 6 weeks old he was strapped to a cross and put into ice for his operation.  … all he has to show for the experience is a very impressive scar, I suppose they were worried about being quick rather than neat.  I’m very thankful that even in such conditions they could and did operate, and also that progress means today’s babies and parents don’t have to go through that. …
I know it made a huge impression on my mother-in-law, she describes seeing him tied down and his arms tied out, then going in the ice and turning blue.

Emotional issues –
My parents took me to have surgery to get it repaired.  I still don’t know what the doctors did to fix it. … I’ve often wondered if that experience had some subconscious effect on me.  My relationship with my mother has been very strained at times – but it’s mostly because of my own perception of how much she seems to care about me. … I can’t help but wonder if the malnutrition I experienced for a brief time … could have affected the way I view my mother forever.
And this –
I have many other stories that involve my childhood, mostly sad and painful stories, and I believe they are all related to this first one.
And this –
I acted bizarrely when I felt threatened.  I would deny that I had a scar, pull my shorts and swimmers up way too high (much to the annoyance of my mother), and later I always crossed my arms to protect my midriff from the eyes and questions that I felt shamed me.  I had also started to self-harm, to avoid any school sports and gym sessions that would involve baring my stomach, and I developed a quiet mistrust of doctors and steered clear of them as best I could.

Adhesions from the surgery –
My husband just had gallbladder surgery and the surgeon came in … and said the problems with his gallbladder were more from his ps surgery when he was 3 weeks old.  He removed his gallbladder and all the adhesions.  Basically the adhesions were causing the gallbladder problems.

Cosmetic aching –
I actually hate my scar… I’m proud to have it in a way, as if i didn’t I wouldn’t be here.  But it just makes me feel so uncomfortable in tight tops as i have a lil hang-over on it.  I won’t wear bikinis – well, in fact I don’t swim much because of it.  Yes, its vain but in my eyes i feel disgusting with it . So I completely understand why you would want to have it lasered away 🙂
And this –
I am 14 years old and i had Pyloric Stenosis.  Depending on where you go your scar could end up looking like a tv antenna or it could just be a small red line.  Don’t let the doctor use clamps or staples to close up the cut.

Cosmetic surgery – yes or no?
I hate mine.  I tried out for a professional dance team and was told, “I really hate to see you go because your dancing is great but with all the modeling we do and two pieces we wear I can’t have a big scar on your stomach.”
Does anyone have pictures of scar revision before and after on pyloric stenosis?  I have been looking on the internet and can’t seem to find one.
And this –
I want the operation now to undo my ps scar from my muscle, a bit scared though as I’m 38 now.  I had the op in 1973 !!  I’ve got 3 sons aged 20, 11 and 5 who have been lucky enough not to get it, also I get a lot of discomfort, even when I was 9 stone it looked the same !!  If anyone had their scar undone from their muscle I would like to hear from you please to see if I have anything to worry about.

So why would I spend some of my time learning, networking and advocating about infant surgery?

Thankfully only some of the many possible ongoing effects of infant surgery have affected me directly.  But I’m one with many others who have wrestled or still struggle with real (and perhaps even some unreal) results of this chapter in our story, as I realise:  There but for the grace of God go I.

Perhaps these blogs (together with more aware times) will help improve the future somewhat for those affected.

What could you do that may make a difference?  Why not post a Comment?

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One thought on “Making a mountain out of a molehill?

  1. wendy williams

    What powerful testimonies you’ve collected and presented here. Thank you for showing the range of issues associated with surgery for pyloric stenosis. Your post makes one aware of the complexity of the issue. I’m sure these voices are just the tip of the iceberg so-to-speak. I am so glad that you are beginning to share with us this information that you’ve gathered.

    Reply

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