An Armagh mum, who despite giving birth to her first born more than 30 years ago, says she has never found out how or why her son suffered from a rare brain injury.
Jacqui Moore says her son Ryan – now 33 – may have gone on to lead a normal life with three beautiful children, but questions still linger as to how he developed hypoxic ischemic encephalopathy (HIC).
Encephalitis is an uncommon illness but is an extremely dangerous one which tends to affect the very young (in Jacqui’s case) and the very old.
Jacqui argues that more awareness should be made of an illness which was forgotten about moments after she left the hospital with her new-born.
Speaking to Armagh I, Jacqui explained how Ryan was whisked off to ICU – where he spent two weeks in a coma – before being discharged.
Jacqui explained how he was taking seizures “bending his back and turning black”.
“He was diagnosed with HIC, taken to ICU, sent home and then it was never mentioned again,” said Jacqui.
“Once he was out of ICU, everything was fine. He was checked every few months with speech and behavioural therapists up until he was three but that was normal.
“He was so hyper as a child; he couldn’t focus and couldn’t concentrate on anything. There was very little sleep and you had to keep an eye on him the whole time. As he got older he had no fear; he would do the stupidest of things and I believe it was down to HIE.
“The fact it was never mentioned again to me was definitely a shortcoming in the NHS at the time. It wasn’t fair on him, especially how it affected him growing up.
“Of course there’s a sense of anger – I was raging back then. I thought he had all the symptoms of ADHD as a child but I got laughed out of the clinic. I was just told that I had an excitable child.
“At the time I accepted that but I was brought up that you were told what you were told and that was that type of upbringing. But I was never told why or how this happened, just that’s what he had.”
Jacqui said her advice today would be very different indeed – a mother should trust her instinct. While three decades have passed more awareness around encephalitis needs to be raised.
“We were very ignorant back then in the early 90s – we didn’t have Google then,” she added.
“For me back then, it was traumatic because it was my first child – I didn’t know what to expect. I just wish more was done at the time to help which is why I want to raise awareness, even now.”
Find out more about encephalitis on the official NHS website here.