How we deal emotionally with infant surgery

Even after many years of reading the infant pyloric stenosis (“PS”) stories of patients and parents on web forums and blogsites, there are still some that still especially move me.  Notable among these are narratives that make me realise, This story could be part of my own story.

My mother and me, I assume a short time after my return home

My mother and me, it would seem a short time after my return home.

My parents refused to talk about the PS surgery I had as a 10 day old in 1945, no doubt in part because many parents did not talk about such things in times past, and I’m sure it was also because they were too traumatized by what actually happened.  I’ve written about this under the My Story tab on the header.

Recently I found a brief interaction between a mother and reader on a German web site. What would move a woman who chose the web-name of “Sewing-monster” to write about her baby son’s PS 5 years after the event?  Traces of the answer are not hard to sense.  Readers of German can read the brief interaction (starting at #6) complete with native idiom; what I give here is a readable translation.

Yes, an operation for one of our mini-mice is always terrible for the parents…

My Big Boy (who is now 5 years old) was operated on for the first time when he was just 10 days old.  Two days after he was born they said he had “adjustment difficulties”, but things went from bad to worse and then after a week they said “pyloric stenosis”.  By then he was only vomiting and keeping none of his food in.  Because he was supposedly too young for this illness and they were also uncertain about this at our hospital, he was referred to the University Hospital in Greifswald and then operated on at just 10 days old.  He survived everything well, slowly became accustomed to food, and at just under 5 weeks we were allowed to take him home.  But for me it was a nightmare.  I remember well how I just cried.

But today he is a squealing 5 year old, except that he still does not like to eat very much.

The second operation followed when he was a good 3 years old, for a congenital umbilical hernia which had not cleared itself up.  Luckily, that was only as an outpatient and after 4 hours I was able to take him home again.

Luckily my mouselet cannot remember any of these two operations.  He does sometimes ask us why he has such a large scar on his stomach.

Another mum, Bianca, replied –

How crazy!  Even this early!  You have already been through a lot.  It tears at our hearts when we see our little ones lying there like that!  I found the children’s ward “prison beds” especially terrible!  If I may ask, what does the scar look like to you when you see it so fresh?  In our case they made the cut in an abdominal crease and we hope it will be hard to see in later years!

“Sewing-monster” responded with –

The usual practice is to make the incision in a fold, and nowadays they’d probably use keyhole surgery.  But yes, he was such a “special case” that already now he has quite a long scar – certainly 10 cm.  It is quite pale now but you still see it quite clearly.

What stood out for me?

  • This mother’s son had his PS operation at 10 days old – exactly the same as I did.  I feel an immediate connection, just like I do with people who had any infant surgery as long ago as I did.
  • The first signs of this lad’s PS emerged only 2 days after his birth and it took a full week for him to be diagnosed and recommended for surgery.  From what I have read this time lag is quite typical, and in the little I know of my circumstances the same was probably true of my case.  Parents often wonder why this delay in diagnosis occurs so often, especially when a baby is so small and frail and the key symptoms of PS are very clear.
  • This baby spent several weeks in hospital after his operation.  We’re not told why; today most PS babies are discharged just one to three days after their surgery.  In 1945 two weeks in hospital was the norm and now wonder if I also had to spend longer there because my PS too was so early.  I have mentioned my mother’s regular commuting by steam train to get breast milk to me in the city hospital.  All this may or will have been part of what made my mother so anxious.
  • Mothers of PS babies routinely tell us that their baby’s extreme sickness and surrender for surgery were the worst time they have ever had to endure.  This German mother adds how upset she was when her son was returned to her care at home.  Many parents also mention this: besides their natural anxiety there is often continued vomiting, they now have a baby who has never yet learnt to feed normally, there is sometimes a wound infection or a developing hernia, and they feel deeply insecure about whether any or all the unexpected uncertainties portend failed surgery or further problems.
  • Like my mother and me, “Sewing-monster” and her 5 year old clearly care about aesthetics and their appearance; she comments on her son’s 10 cm scar (huge by most standards) and mentions that at 5 years old he often wants to talk about it.  Although my scar even today is less than 10 cm long, it also shows very clearly how little many 1940s surgeons cared about their patient’s future emotional well-being.
  • PS babies grow up as normal people do, but one wonders what's going on deep inside.

    PS babies grow up as normal people do, but one wonders what’s going on deep inside this young man.

    This German post also shows once again how important it is for parents to be able to air their pain, anger, and sadness, and how much most children who have had early surgery that they cannot consciously remember need to repeatedly hear and “process” their story and their emotions about it.

There is clearly a lot in this brief web exchange with which I immediately connect.

There is also a lot to instruct and reassure parents and patients, and to challenge the medical professions.

5 thoughts on “How we deal emotionally with infant surgery

  1. Wendy Williams

    So moving. My heart went out to that mother. Oh my, to give up a newly born child to the hospital! And yes, all those worries post-surgery for the mother – infection, proper healing, effective feedings, etc. You used a phrase, “deeply insecure” to describe the mother once her baby is returned to her after the operation. I’m sure my mother felt the same way when I was returned to her. What stood out for me though is the mother’s comment about her baby not remembering anything about the two surgeries. Not quite. Even if her son didn’t ‘remember’ verbally, he remembers emotionally and somatically. At ten days old and three years old, he is not a blank slate. How I wish this mother had more understanding of this so she could help him in ways not are not obvious. The medical profession, however, has little clue about the emotional and somatic baggage it burdens babies and children with. Parents need knowledge and support and their children need to benefit from what they know. When will this dysfunctional cycle be broken?

  2. Fred Vanderbom Post author

    You are right, Wendy: what this mother doesn’t know about infant memory could make such a difference for her child and probably for her too. Because this material was found on a German forum site it is unlikely our comments will reach her, but I’m sure what you and I are posting is making a difference for many people. We’ll keep up the good work!

    1. West Pearson

      I guess the biggest impact to me was self confidence (lack thereof!). I was raised with my mother saying “oh, he can’t do that, he has weak ankles (the scars from IVs). I was 16 before I lived with an uncle who didn’t care what anyone THOUGHT I could do, he just expected me to DO IT! Greatest thing that ever happened to me! I’ve never had any health problems from this, been VERY healthy.

      1. Fred Vanderbom Post author

        Thanks West for feeding back something of your experience. Looking for a vein that is capable of taking an IV in a badly dehydrated baby, and having to finally do a “cut-down” into one of the ankles are often the single most traumatic part of surgery for infant pyloric stenosis.
        I am sure that the attitude of our parents towards a traumatic event in our past affects many of us (the patients) very deeply, and I trust that these few lines will underline the importance of parents dealing with (working through) their pain and fears and then enabling their child to do the same.
        Like you, I have been affected psychologically (or emotionally) but have been very healthy, happy and “together” apart from that.

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