Claudy mum praises charity for their support after her six year-old son suffered a cardiac arrest
On April 9, 2015, Sean Deighan suffered a cardiac arrest, aged six years-old. For weeks the County Derry lad fought for his life, battling against the odds to make a full recovery. It’s been a tough two years for Sean and his family, but with the help of local charity Brain Injury Matters, they have learned to cope with his condition, as his mum Orlagh explains...
It started off as a normal day for Claudy woman Orlagh Deighan, however April 9, 2015 is a day that she will never forget.
Orlagh was in Dungiven running some errands when she got the dreaded phone call that her son Sean had collapsed while he was playing outside at his dad Darragh’s house in Feeny.
When Orlagh arrived at the house, she found her beautiful, blonde haired boy lying lifeless.
“Between the lot of us we gave him CPR for almost half an hour. Then the Rapid Response team came and they got a very weak pulse after using the defibrillator,” she explained.
Sean was rushed to Altnagelvin Hospital immediately however he was later transferred to the Royal Belfast Hospital for Sick Children.
After an emotional and tough few days, Sean eventually regained consciousness in the hospital’s intensive care unit.
Following a series of tests, doctors discovered that Sean had two rare undiagnosed heart conditions – Left Ventricular Non-Compaction Cardiomyopathy (LVNC) – a rare genetic disease of the heart muscle.
Tests also confirmed that Sean was suffering from Long QT syndrome – an inherited condition that can cause heart rhythm disturbances.
Orlagh admits it was hard to take the news however she says they felt so ‘grateful’ that their beautiful son was still with them.
After having a defibrillator fitted, and after weeks of recovery, doctors finally gave Sean the go-ahead to go home, although Orlagh knew her son had a long journey ahead of him.
“We went through so many stages at that time,” she explained, continuing: “First we went through the whole ‘we’ll accept him whatever way he is, just as long as he lives,’ when he was lying in intensive care. Then we were so happy when he came around and was fine and remembered everything. We were so happy and thankful, but then when we came home with this wean that was an empty shell and we had to try and rebuild our lives with the threat that Sean could die again at any time, that was very hard.”
A short time after Sean returned home, Orlagh, who is also mum to Cahan and Martin, started to notice a difference in her son’s behaviour.
“Soon after Sean came home we started to notice him doing random things, like simple things,” she said.
“Going to school was a task. He’d be dressed and he’d be sitting in the car with his bag on his knee and he couldn’t remember where he was going. Once you said to him ‘we are going to school’ he wouldn’t recognise the roads he was on. He’d be outside the school and he wouldn’t recognise the building. Then it was the same in the evenings. He couldn’t tell you how to get home. He also had bother on and off remembering my brothers’ names. He couldn’t remember being at their houses before. He would also do things like setting shoes into the fridge and one day he tried to put a pair of shoes into a pot that was boiling on the stove. Sean often ate his dinner and did not remember eating and was constantly hungry, a problem he has not been able to correct as of yet. Other days I would see him standing in the middle of the street and you would see a confused look on his face. He didn’t know where he was.”
Naturally, Orlagh was concerned about her son and decided to seek help.
However after contacting health visitors, social workers, doctors and paediatricians, she felt that she had hit a brick wall.
“Basically there was nowhere for us to turn. Every time we went to the doctor they told us there was nowhere for us, that there’s no help out there for us. People like Sean don’t normally survive so there is no need for those services. It was very frustrating,” she said.
“During that period when he was really bad with the confusion, I wanted my Sean that was there before. He was such a happy child, he was never anxious before. Then we were left sitting with this wean and there was no help or nowhere to go. We felt nobody was listening to us but we managed the best we could with him.”
It was only when Sean’s granny suggested that they try to make contact with The Cormac Trust that things started to look positive.
“Straight away they were on the ball and they put us in touch with the charity, Brain Injury Matters. It was the first time that someone had actually come to the house and sat down and said ‘We’ve heard this before. Sean has a brain injury,’ whereas before we kept looking at him and thinking ‘are we away mad?’” said Orlagh.
“Two ladies from Brain Injury Matters came out to the house and see that day it was like a weight was lifted off our shoulders. They did block sessions, they came from Belfast to the house once a week and they worked with Sean's anxiety around his life threating condition. He had severe anxiety about dying. He wasn’t sleeping, he was pacing the floor at night. Once they took those anxiety issues away from Sean, it helped us to help him. They showed us how to manage him. They also helped to build my understanding around the brain injury.
“That Brain Injury Matters were saviours to us. We wouldn’t have been as far without them. Lots of people don’t know that Brain Injury Matters exists, but it’s there and their service is invaluable.”
Orlagh says that Sean, who turns nine next month and has aspirations to become a fashion designer, ‘still has his off days’ and ‘there are so many things he cannot do that he would like to’ but they ‘feel lucky that he is here today’.
“It’s very hard to hold Sean back from being a normal wean. He wants to do normal things. He wants to go out there and play with his brothers and his cousins but his condition causes fatigue and the next day he’s that exhausted and sick, he can’t get out of his bed because he is so weak. When he is tired his brain is badly affected on a daily basis which has affected both home and school life."
Orlagh has nothing but praise for the staff and children at Sean’s school, St Colmcille’s PS, Claudy, who she says have been ‘absolutely fantastic’ and ‘so understanding’. "They have been a real support for both Sean and myself whilst trying to understand what we were going through.
“Sean’s defibrillator has 90 per cent chance of saving his life and we have to put our faith in that but anyone who knows or is with Sean knows that it is rapid response. We have a plan and his school has a plan. It’s ‘999’, you don’t hang about and Sean knows that. He knows what’s ahead of him,” said Orlagh who says that having first aid skills are ‘very important’.
“The need for people to know first aid doesn’t go away. We’re always on high alert with Sean because we know what could happen. I think that people in our wee community should try and make people aware that you need these skills, or if you have them for some time it’s always a good idea to refresh them. People shouldn’t forget about first aid. If it wasn’t for that, Sean wouldn’t be here today.”
Brain Injury Matters NI is a local charity dedicated to support people affected by Acquired Brain Injury to rebuild their lives and reach their full potential in the community.
The Family First Service is a specialist support service designed to empower families to support children who have sustained an acquired brain injury (ABI). They work with families who have a child aged 0-12 years old to provide a tailored family focused programme targeting the specific goals of the family. Their Family First Team work alongside the family to empower the whole family unit to provide the appropriate support to their child. Their team are skilled professionals with an expertise in brain injury and work in partnership with parents and siblings supporting their knowledge and skills through ensuring the family unit are equipped to take confident steps towards a positive future.