Jamie’s symptoms were put down to one thing – Down syndrome!

 In Diagnostic Overshadowing, The DS Advocate

Jamie was born 10 weeks prematurely and required surgery at 3 days old to repair a duodenal Atresia and Annular Pancreas.

Jamie, Feb 2020

He recovered well and we were allowed to take him home on 14th August (his due date!). Just before he left the hospital he started struggling to feed. We didn’t think much of it at first and the Neonatal team didn’t seem overly concerned. His feeding problems gradually got worse and he was losing weight even though he was already on the lowest curve of the Down’s Syndrome growth chart.

He always seemed to be constipated and slept a lot. I discussed this several times with midwives at the weigh in clinics and at one point I broke down in tears as I said that I knew there was something wrong with my baby but I just kept getting told that babies with Down’s Syndrome always struggle to feed and gain weight (even though this had not been an issue from birth so I didn’t believe this!).

Jamie (6) with his big brother Owen

It was also implied that I was “highly strung” as I had been through a lot of stress and trauma!. I took him to the GP a few times and he was prescribed suppositories for his constipation. It came to a head one Saturday morning when he was crying with pain and bringing up green bile. I called our GP who said to bring him straight in as it sounded like gastroenteritis. Whilst there he felt his tummy and said he was slightly concerned and to err on the side of caution take him directly to the paediatric ward at our local hospital.

Once we arrived it was pure coincidence that the surgeon who carried out the first operations was working. He couldn’t find anything on the ultra sound scan and asked for permission to open up the original wound to take a look. It was found that Jamie had a severe Volvulus with lots of polyps. No one had warned us that this was a side effect of a Duodenal Atresia repair and no one asked about any of his previous surgeries despite the fact he has a very obvious huge scar across his abdomen!.

Had we been warned or been taken seriously as parents this could have been detected a lot sooner. Jamie would have died very shortly had it not been for the concern of our GP and the surgeon opening him up.

I feel very strongly that all his symptoms were originally put down to one thing – Down’s Syndrome!

There was no questioning or investigation regarding my concerns until the day our GP felt his tummy and requested we bring him in”.

Jamie & Mum Dara

 

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