A Co Tyrone mum has praised the work of health and social care staff who looked after her son as he became seriously ill due to a rare condition after he was born.
Leo Allen from Augher will celebrate his first birthday in November and his mum Kerry says he is now thriving - despite spending his first month in hospital.
He was born with a rare chromosome abnormality which is yet to have been given a name, but Kerry says it has had an impact on Leo’s breathing, muscle tone and mental and physical development.
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Leo spent time at the neo-natal unit in Craigavon Hospital as well as the Pediatric Intensive Care Unit as his worried parents Kerry and Daryl feared for his wellbeing.
“When Leo was born he had problems breathing straight away. We did get to see him straight after he was born but he was put straight into an incubator,” Kerry told Belfast Live.
“He was my first baby and I was a wee bit naive in thinking that it was just because he was born via a C section.
“I didn’t suspect anything was wrong, but they were trying to get us to feed him but he wasn’t really having any of it.
“After two or three days pediatricians started coming around and saying they had noticed a few things visually about him that they wanted to check.
“They brought in a genetic specialist who examined him and they did say that they believed it was something he has carried through his genes.
“About two weeks later we got results back to say that it was a chromosome abnormality, which doesn’t really have a name.
“There’s not a lot of information about it, but any information that we do have seems to point to this.
“He has low muscle tone, developmental delay physically and mentally, hearing problems, kidney problems and a heart condition called ASD as well.”
Kerry added it was a shock to her and Daryl as there had been nothing during her pregnancy that suggested any issues.
“Everything was totally normal during the pregnancy and we had no history of it in the family or anything,” she added.
“It was a big shock, I was just 23 and everything was going normally. I thought I would just go in and have the baby and have him home again in two or three days.
“So for him to be in for a month and me to be in for a week it was a bit of a shock.”
“We’ve had highs and lows since then. On St Patrick’s Day he was a bit sick and hadn’t slept all night so I took him into hospital and he ended up being rushed into theatre to be ventilated because his oxygen levels were so low.
“So he was ventilated in Craigavon and then transferred to the Royal PICU and it turned out he had Adnovirus, which is a chesty infection which affected him quite badly.”
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The Co Tyrone mum said Leo has been doing much better now as he heads towards his first birthday on November 1.
“He has had a button fitted which gives him a feeding tube straight to his stomach and ever since then he has been thriving.
“He has been putting on loads of weight and is just becoming more alert and aware of his surroundings.
“He still is delayed developmentally and is a bit behind some of the others his age, but his progress has been amazing and he is reaching those milestones."
To say thank you to the doctors and nurses who looked after Leo, his family is organising a special first birthday fundraiser for the two hospital units where he was kept.
Local businesses have weighed in with prize for the event at Glenageerah Orange Hall on November 5.
Kerry added: “I didn’t want to just hold a typical one year old birthday party and I had been thinking of doing a fundraiser to give back to the places that have helped Leo.
“The care that he received in both places was amazing, every nurse treated Leo like he was their own baby.
“They made us really feel like he was in safe hands. Every time I think back to the neo-natal unit, I never want to go back there but if I did have to go back I would know I would feel at home.
“You really didn’t want to be there but you didn’t mind at the same time because it was like you were with your family.
“You might be getting bad news from doctors and be sitting there crying, but a nurse would come along and make you feel like everything is going to be ok.
“In the Royal PICU it was the same, when you were there you just felt so at ease and they were so in control that you never even felt he was that ill.
“They are very stretched but they do always try their best and we were so grateful for that.”
If you would like to donate to Leo’s fundraiser, you can visit the fundraising page here.
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