Parents would 'give up every penny' to hear son speak

Story by Seamus Enright

Sunday, 9th December, 2018 7:40am

 Parents would 'give up every penny' to hear son speak

Jarrah with his parents Elysha and Ben.

The family of a young boy with cerebral palsy, who sued the HSE over the circumstances of his birth at Cavan General, have hit out at “years of being made feel it was our fault” before a settlement was finally reached.

Elysha McCrudden and Ben Folkman feel change is desperately needed in how cases like their son Jarrah’s, where liability is admitted, are dealt with.
“A lot of families have gone before us and I’ve no doubt a lot of families are going to come after us, for one reason or another,” says Elysha, who tells The Anglo-Celt that families are often forced to the pin of their collar to fund costly medical reports to prove their claim.
“They are going to still be made feel it’s their fault, they’re going to be made feel they’re wrong about everything, that it could be every other possibility except for the one that pins it on them. They’re going to be dragged across the coals, they’re not going to be given much support, to the stage that they’ll just end up giving up. They want you to give up, that’s what I think.”
It’s almost two months since Jarrah (seven) of Station Road, Cootehill, through his mother, successfully sued the HSE over the circumstances of his birth on April 19, 2011. Approving the settlement, Mr Justice Kevin Cross of the High Court praised Ben and Elysha for the care they have given Jarrah night and day. “Don’t think it’s in any way your fault,” the judge told his parents.
Jarrah was born with a range of conditions – quadriplegic cerebral palsy, which affects all four limbs; CVI blindness, a condition affecting his sight; and refractory (uncontrolled) epilepsy. As he grows older, and bigger, Jarrah’s hips have also begun to dislocate.
The High Court settlement of €9.1 million will ensure the necessary care framework and infrastructure is put in place to allow him to “live the best life he can possibly live”, says his mum.
 

‘Exhausting’

But Elysha says getting to this stage has been “exhausting”.
She recalls one particularly “hurtful” legal back-and-forth, during which her son’s life expectancy was callously debated. “They started at one end and forced us to start at another. They’d already admitted liability but we still had to go through all this, jump through hoops.
“I don’t believe they had any intention of ever going through with a trial. So it makes you wonder, why put people through all this? Was it just to break us down?” she asks.
In the weeks running up to the settlement finally been agreed, Elysha and partner Ben reluctantly welcomed a stream of neatly dressed HSE experts into their home. Each had been appointed to “nit-pick every little detail. All smiles, ‘Oh he’s gorgeous!’, but they’re there to make reports about reports.
“It’s a kick in the teeth,” says Elysha, who with Ben, had to take out a loan of €3,500 just to help pay the cost of just one of Jarrah’s medical reports.
“For seven years they kept us wondering,” states Ben, a native of Australia who moved to Ireland almost a decade ago. “For seven years, they left us asking ourselves if somehow it could have been our fault. During all that time we’re getting assessments and reports, anything to shed some light on what had happened.”
Both she and Ben would readily “give up every penny” to hear their son’s voice “just once”.
“They didn’t just disable [Jarrah], they disabled the whole family,” claims Elysha. “It applies to us, it applies to the grandparents, the cousins, aunties and uncles. We know families with children the same age who’re nearly afraid to say their kid is running and walking in case it upsets us. It doesn’t and it shouldn’t, but it also shouldn’t be this way.”
 

Concerns

It was Elysha’s final scan on April 15, 2011, a week before Jarrah was due, that she voiced concern, telling medical staff at CGH that she was “feeling less movement” inside the womb.
A trace scan was applied, showing decelerations that ultimately weren’t picked up.
Elysha was readmitted to hospital two days later.
Jarrah’s case against the HSE centred on the initial alleged misreading, as well as the hospital’s failure to put in place a plan for continued close monitoring and expedited delivery.
It was also alleged that there had been a further failures concerning CTG monitoring on April 18 and April 19, as well as CGH allowing an unsafe set of conditions to persist during the course of Elysha’s labour.
Jarrah was delivered flat and unresponsive and required urgent resuscitation.
It wasn’t until the following morning when the visiting obstetrician told a stunned Elysha ‘we’re all praying for your son’, that alarm bells started ringing.
That moment, Elysha is reminded, felt as if she had been transplanted into “some kind of nightmare. I just wanted it to be over. I just wanted to wake up.”
Unbeknownst to her and Ben, Jarrah had been having seizures from about six hours after his birth.
He was subsequently transferred to the Coombe in Dublin and spend two weeks in sedation as doctors there strove to bring the seizures under control.
An MRI showed “colossal” damage to Jarrah’s brain, to use one doctor’s description to Elysha.
It wasn’t until week two that Elysha finally got an opportunity to hold her son. Up to that point, it had been through the side of the neo-natal cot.
To have him in her arms, Elysha remembers: “was like Christmas. It was unreal.”
While Ben and Elysha followed through with their plans to start a new life in Australia, the arrival of a second child, Aria, saw the family return to Ireland in 2013 to be closer to family.
 

Jammin’ for Jarrah

Since then, they have fought consistently on Jarrah’s behalf, with considerable assistance from friends and the wider community.
‘Jammin for Jarrah’ saw Ben and seven musical friends group launch a GoFundMe campaign, taking to the road to complete 32 gigs in 32 counties in just seven days, to raise the funds to purchase a specially-adapted car for the family.
Jarrah is now aged seven years. He’ll turn eight in April next year, and currently attends the Holy Family School in Cootehill. He loves horseriding, water, music and lights.
He shares his name with the Aboriginal term for the eucalyptus marginata tree, the wood from which is renowned for both its beauty and strength.
While Jarrah lacks speech, mum Elysha and dad Ben often interpret the sounds he makes. He’s all smiles as his mum rubs his left foot gently.
“He’s a very happy boy. We’re very lucky. His temperament is great, he’s very social, but he will let you know when he’s fed up. He’s cheeky too, like any wee boy his age. He just can’t do the things other kids maybe can, and he never will. They didn’t rob us of our child, but they did rob us of what he could become,” says Elysha, who admits it to be "bittersweet" how quickly Jarrah’s little sister Aria has developed.
 

Round the clock care

Jarrah requires 24-hour, round-the-clock care. The settlement money will provide for this, but it wasn’t until the HSE admitted liability that Ben and Elysha could start properly planning for Jarrah’s future care.
Every cent spent as part of the settlement will be accounted for, with a case manager to appointed, with all purchases to be assessed by the courts.
“If the money runs out, that’s it. Our thinking is that if we put the things in place now, the best possible infrastructure around Jarrah, it will benefit him in the long run,” believes Ben.
Despite what Jarrah’s care entails, Ben and Elysha can’t but think about other families in similar circumstances.
 

Lucky

“There are kids a lot worse who have no supports. We’re very lucky. It’s not like every child with a disability has had a neglect but, regardless, the services that are needed should be provided to them as much as they should be for Jarrah.”
Ben feels the recent reports concerning HSE settlements, particularly in light of the cervical scan debacle, have shone a light on just how difficult it can be for families to claim against the HSE.
“It’s everything, the toll on your mental health that takes. It will be a relief, the money, it’ll mean less stress. But [the HSE] would save money more likely if they just ‘fess up to what they already know themselves if they know there is a problem. They’d save it on assessments, expensive lawyers, all of that. All this dragging things out. Just ‘fess up from the get go and forget all this blame game bulls**t.”

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