Wednesday 15 August 2018

A fight for answers

A Coolaney family spend years fighting the HSE for answers. Now that they have them, they are assured that Kyle's needs will be met for life

Jessica Farry

As Kyle Carpenter watches the darts in glee as he celebrates his ninth birthday, his parents reflect on their journey from his birth to where they are now.

Kyle's family was last week awarded €5 million (without admission of liability) in a settlement over the circumstances of Kyle's birth in Sligo General Hospital back in 2009.

The money grabs the headlines, but this goes further than that. This is about questions raised by the family, and the lengthy process of getting those answers.

The settlement in the case took place after mediation talks.

Now that the dust has settled on the case, the Carpenter family feel that they have the answers they had spent years seeking.

They no longer have to worry about how they will fund Kyle's care and can rest assured that his needs will be met.

"He was a very distressed baby. He cried all the time. It was very hard to feed him," Lisa explained in an interview with The Sligo Champion.

"He had low muscle tone, which we didn't really know about at the time. He didn't sleep, he couldn't lie down for longer than 20 minutes because he had so many feeding issues and colic and reflux and everything.

"He had to be in an upright position so we held him all the time. We walked around the house and at night time we took turns holding him in the upright position because he couldn't sleep lying down, he was only getting 20 minutes at a time.

"The appointments started coming in constantly. The physio was the main one. He was up in Sligo General once a week for an hour and he would scream through the whole appointment. He'd get a break halfway through and I'd give him a cuddle and he'd have to go back then."

The experience was difficult for Kyle, and his parents felt helpless. Michael said: "It was like trauma, he didn't want anyone near him."

Lisa added: "It was very distressing. We persevered with it because we thought this is what he needs, as hard and all as it was at the time." Michael and Lisa convinced themselves that Kyle would benefit from these appointments. During every visit, they were told that their son had low muscle tone.

Lisa explained: "We put our trust in the system because we didn't know any different. They'd say 'keep up the physio you're doing a great job'.

"So we kept up the physio and next appointment 'it's low muscle tone' and I was getting really concerned at this point. He was 6-9 months.

"It was very obvious Kyle was not reaching his milestones. I had to google all the medical terminology because I didn't know what they were.

"When I started googling them and looking at the symptoms I said 'there's something not right'. Then that's when I contacted Roger (Murray, Medical Negligence Solicitor with Callan Tansey)."

Having done her research, Lisa found the names of Neurologists in Temple Street who she felt could help give them the answers they were searching for.

They felt that they weren't getting clear answers in Sligo and this forced Lisa to take action herself. She asked for, and got, a referral to a neurologist in Dublin.

The doctors in Sligo General Hospital said "in Dublin, they're probably going to tell you straight out it's cerebral palsy".Michael added: "That's all we wanted to know."

Their worst suspicions were confirmed when they did eventually visit the Neurologist in Dublin.

Kyle was diagnosed with CP on September 2nd 2010.

The family travelled to Dublin for the appointment, when Michael and Lisa were told to sit down by the Neurologist, they knew what was coming.

"I knew, but it still wasn't easy. We were sitting and waiting and still hoping and he said 'yes, your child has Cerebral Palsy'. We knew but we were still shocked and heartbroken. We felt like the system had let us down."

They were told that Kyle would never walk, and he may never sit alone.

"That was a massive blow," Michael and Lisa conceded. "I asked for the scan pictures from the MRI and he said 'did you not see these before' and I told him no.

"So he showed all the different areas where he had brain damage so I asked 'what does the future look like'. With still a little bit of hope. He said 'your child has brain damage it's not going to go away'. That was it."

The mediation process came to a conclusion quickly in the end.

Mr. Murray said: "There was an admission of a certain amount that they admitted that Kyle should have been born an hour earlier but they didn't accept that Kyle suffered any damage because of that.

"There still would have been a fight in relation to what caused Kyle harm. Mediation came as music to our ears.

"We were ready for a fight. Our firm's policy is that we don't ever step away from a fight that we can win but Lisa and Michael would have to be away from home.

"The stakes would be very high. Our experts were very confident. But you still can't guarantee victory. Mediation is something that I had discussed earlier in the year and we felt 'let's see if we can go down this road'."

The money awarded to the family will not come into their hands, though.

Roger explained: "The other thing that people might say is that the money, on paper, looks like a substantial amount, but what people have to remember it's not a lotto win.

"The President of the High Court is in charge of Kyle's money forevermore. Even when he's 18 or 80 he won't be taken advantage of because there are unscrupulous people out there. The President will always be in charge.

"The money is for care and Kyle's needs for life. Pat Kenny mentioned it to me during an interview with Newstalk, he said 'there are lots of disabled children and would it not be fairer to have a no-fault system' I said 'every disabled child is a tragedy. Children with cerebral palsy are preventable tragedies. It's different'."

Michael stressed that the settlement amount will remain in the hands of the court.

"It's in the court, we don't have access to that. If Kyle needs anything we have to go through Roger and Roger goes to the court."

Having the answers, and being able to explain the situation to Kyle when he's older lifts a weight off the family's shoulders.

Roger explained: "The answers are what are important for people.

"What they do with that information is up to them then. Kyle, when he gets older, will be asking these questions.

"Now we have the ability to say to him 'we did look into it, this is why you are the way you are, and not able to do certain things'. But here there is a cushion here.

"What it means is that Lisa and Michael can stop worrying about what Kyle's needs will be when he's 30 or 40. It's one less thing to worry about."

A standard day in the life of the Carpenter family involves getting up at 7am. Except, on the day of the interview, Kyle arose at 5am declaring 'it's my birthday today'.

Kyle requires physical support and assistance throughout the day, at home and at school.

"Michael would do all the lifting unless he's not here. He'd lift him out of the bed, and bring him to the toilet. That's totally lifting on and off, washing his hands.

"He physically carries him down the stairs. Michael will get ready for work and you have to feed him, he can't feed himself. I'd feed him and dress him.

"We're completely dressing him. He wears a tracksuit for school because it's soft. He's after saying he doesn't like jeans. You'd get the splints on for him to go out and go to the toilet, otherwise you're carrying him or he has to crawl out.

"The splints are strapped on. When he has those on he can walk while holding a hand. So we put the splints on so he can walk to the toilet. You'll brush his teeth and wash his hands. You'll get the jacket on him then but you have to bring him in and lean on the couch to get the jacket, you can't stand there and say 'wait a minute'. He needs total support.

"You get the jacket on, out to the car. He has a swivel seat and then off to school. He's at school for 9.20am.

"At school he uses a walker, he has a wheelchair for longer distances or he might use it for first break because it's only a short break. I collect him at 3 o'clock and then you change him and feed him.

"The splints come off then cause it's a long day with them on. He's back to crawling around the house for the evening - he can't go out on the street. You're limited what you can do. The only evening he gets out is on a Monday because he goes to swimming. He loves swimming."

School has benefitted Kyle hugely. He is fully integrated with his classmates, and he has made loads of friends, despite his parents' early fears.

Lisa said: "He loves school. They're amazing. All his teachers are very good. He's fully integrated, it's so important.

"He is very happy at school and it is working out well despite all his needs. He is content. We worried about him making friends because he doesn't have the speech. They actually understand him."

Michael added: "They all love him at school. He loves the routine."

Kyle is a big Sligo Rovers and Liverpool fan. He is a regular visitor to The Showgrounds, and even got a birthday card signed by all the players.

He went to his first Liverpool game last year, and will be at the Aviva this summer to see them play Napoli.

Michael said: "Next season we'll hopefully bring him to Anfield. He wants to go to a Man United game because he thinks there might be trouble.

"Even for the Shams game he wants to go over and sit in the Jinks Avenue Stand with Forza because he thinks there might be trouble! He loves messing. He loves the craic."

Despite the challenges, Kyle has even found a way to play sport himself. "He's happy with the little things. He has a basketball hoop in his room that he can play with.

"He plays darts as well on his knees. He's very bright. He understands everything. It's expressing himself that he struggles with."

Roger has spent some time with the family in recent years and he has been able to see the growth of Kyle's personality. "He's a strong personality, you can tell his likes and his dislikes. He has a mind of his own.

"He has an awareness. Sometimes he gets frustrated because there's things he cannot communicate but he gets everything.

"Part of the compensation was for assistive technology. It has transformed kids' lives. It unlocks their ability to express themselves."

Commuication can be difficult for Kyle, and his parents feel as though they are his voice. They speak on his behalf. This leads to frustration for everybody.

"Everybody deserves a voice. We feel at the minute that we are his voice. There's only so much he can express himself through sign language.

"I have to remember an awful lot of stuff. He might say something to me and I have to remember to tell the SNA. I have to remember to tell her and he's happy because he knows she's knows. Sometimes I might forget to say something.

"He's still not sleeping the night. It's not as bad. For years, the start of his day was at three or four in the morning. Nobody knew that either because we're here all the time. It's 24/7. People don't realise that.

"He goes out the door happy but there's a lot of work that goes on. He still has a lot of appointments. Frustration is a big problem for us all as a family. It's frustrating and heart-breaking."

Michael and Lisa said that they would encourage anybody with questions to seek help. If it wasn't for Lisa hearing Roger speak on radio with regards medical negligence, they may still be trying to figure things out.

Although it's been a long and at times testing road for the family, they can now rest assured that Kyle's needs will be looked after as he grows older.

Sligo Champion