‘It was fantastic for Saoirse to just be out of the hospital’

The proud mum of an inspirational little girl from Ashbourne says bringing her daughter to her first ever St Patrick's Day Parade last week was "magical."

Five year old Saoirse Clifford has been through a lot in her short life. Saoirse who has Down Syndrome underwent Duodenal atresia surgery on her bowel at just five days old, survived meningitis as a baby and underwent a craniotomy just weeks after she was christened. The brave youngster also has Down Syndrome associated arthritis.

Due to her ongoing health complications, the adorable little girl has spent much of her early life in hospital and until this year had never experienced a St Patrick's Day Parade, something her mum and dad Catherine O'Hara and Stephen Clifford were happy to rectify last weekend.

"She absolutely loved it," said Catherine.

"She loved the lead up and going in the tea cups and the bobbing ducks, she loved the game shooting the balls with the toy gun, because she could do that from her wheelchair so that was brilliant. She got a little overwhelmed once the music started but she'll know what to expect for next year now.

"It was fantastic for her to just be out of the hospital for St Patrick's Day."

Tests confirmed in Catherine's late stages of pregnancy that Saoirse had Down Syndrome. It was also at that point that Catherine and Stephen knew their little bundle would need surgery when she was born.

"I had blood tests done in the National Maternity Hospital in Holles Street and we found out at 36 weeks that she had Down Syndrome and we knew she needed surgery," said Catherine. "They knew I was carrying extra fluid and I had a scan and they could see that she had a 'double bubble,' she added.

This is when doctors can see two bubbles in the baby's abdomen. These bubbles are the enlarged, fluid-filled stomach and duodenum that show that there is an obstruction in the duodenum.

"When she was born on 7th July 2018 she was transferred directly to Crumlin and within a few days she had duodenal atresia surgery on her bowel," remembers Catherine.

"We were in for a good few weeks, she recovered but ended up reliant on tube feeding, so that was another journey for us that we weren't expecting," said the Ashbourne mum.

"In that October, she got bronchitis and was in hospital again. We just got her home and had her christened when a week or two later we ended up in hospital, they found out she had meningitis but didn't know what type.

"When her paediatrician came around they had to do CT scan and from that they found that pus had travelled to the left side of her brain so she had a craniotomy when she was five months old. She was transferred to Temple St that evening for the procedure the next morning.

"We spent our first Christmas in Crumlin. She got out mid-January and had a peg inserted to be fed."

Despite having to contend with hospital stays for common colds and viruses most children could recover from at home, Saoirse is "thriving" according to proud mum Catherine who said:

"She is getting a lot stronger, she started school there in September in Scoil Chiarain in Glasnevin and she is thriving. She is not walking yet, she has splints and a wheelchair but she will get there it will just take time because she has been knocked with so many different things.

"She has Down Syndrome Arthritis as well. She is a little bit verbal but not much so she uses Lámh." (Lámh is Ireland's manual sign system designed for children and adults with intellectual disabilities and communication needs)

The five-year-old is a well known character in Ashbourne where she gets a lot of attention according to Catherine.

"Saoirse is so well known in the community, it's Saoirse first, people say are you Saoirse's mam? It makes me so proud!

"She loves dancing, music, reading, she loves being out and about in the community. She has a great sense of humour and she always has this amazing smile.

"She does have her moments, she is quite strong-willed, she knows what she wants and she can be stubborn but she is very caring and kind.

"She just loves being around people, she loves school and she loves learning."

Catherine says she has learned so much from Saoirse's journey.

"I have learned so much since Saoirse was born like taking each day as it comes and having patience and learning to slow down and live in the present.

"My whole life did a 360 when Saoirse was born, I had to give up work to care for her so that was tough but it has been the most rewarding thing that I ever done in my life. I wouldn't change it but it has its challenges as well.

"As a parent, I am her occupational therapist, her physiotherapist, speech and language therapist, I do everything with her but I'd never have it any other way."

Positive steps are being introduced in a bid for a more inclusive society and World Down Syndrome Day which takes places every March is an opportunity to create awareness according to Catherine who said:

"Society is changing and changing for the better, that's why days like today are great for celebrating differences among children and adults but not to stereotype them."

The proud mum hopes that Saoirse will reach her full potential in life and that the education system will allow her to do just that.

"The only thing they need to look at are specialised schools because unfortunately if Saoirse was in main stream school and turned 18 she could still continue her Leaving Cert year but in specialised schools, once children with disabilities turn 18 they finish school and have to go into adult services and I think that is so wrong. Why should they be treated differently than typical children and not get to finish their education? Hopefully come Saoirse's time she can finish her years in Scoil Chiarain."