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 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.
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.