Anybody who’s brought home a newborn knows the experience is terrifying: The battery of baby aids to get through a single day, the tiny size, the sheer dependency.
Most parents wing it, acting on instinct. If the child is healthy, sleep deprivation is probably the biggest headache. However, when a child’s health is compromised, bringing up baby is a whole different ball game.
Jean Gaffney was taught over two days how to feed a tube down her newborn’s nose. The brain damage he suffered at birth killed his sucking instinct. Instead of a bottle or breast milk for calorie intake, Dylan Gaffney-Hayes was reliant for survival on a plastic tube for his first 43 days of life.
Dylan’s dad, Thomas Hayes, recalls how they sometimes taped the tube to the handle of a sweeping brush as they had no IV stand and they needed to keep it elevated to permit the feed to flow. They would occasionally tape the tube to the inside of the living room door, but if anybody opened it, the tube would jerk from their infant’s nose.
They went about “in a haze” they say, all the time aware that their baby could aspirate (inhale food into the airways), causing him to choke. But they muddled on through the fear, until finally and unexpectedly, on day 43, Dylan fed from a bottle. Thomas describes it as “a day of chaos”. Jean was at the rear of the house, cleaning the dog’s kennel; Shauna, their daughter, then aged five, fell and cracked her head and was “pumping blood”; and Dylan pulled out the tube.
However, out of the chaos came progress. They tried Dylan with a 4oz bottle and he fed.
As the months passed, Dylan’s physical disabilities became more obvious. When they sat him up, his head would lag. One hand was fisted and his legs weren’t fully extended. He was referred to the Central Remedial Clinic (CRC) in Waterford.
In the first year of life, he had physiotherapy twice weekly at the CRC. He had occupational therapy (O/T). By 2009, his parents were paying for additional physio at a clinic in Templemore, Co Tipperary, a 240km round trip for sessions that cost €75 an hour. They were fortunate to have the funds, but unfortunate in how they acquired them. Jean had taken redundancy from Waterford Crystal and had also sued Waterford Regional Hospital (WRH) for the injuries she suffered — her womb and bladder ruptured — during labour.
The case was resolved and Jean received compensation. However, the hospital and the HSE refused to admit liability for the injuries caused to her baby, even though the parents say they were told by the obstetrician that “there would be no cover up” and “we will not be defending this”. Dylan’s parents, in a statement when the case was settled, said they were given these assurances at the time they discovered Dylan had a diagnosis of cerebral palsy.
Jean and Thomas, from Kilcohan Park, Waterford, agreed to be interviewed by the Irish Examiner because they wanted to highlight what life is like when families are sent home from hospital with babies damaged as a result of hospital care. They expected to receive every assistance from the hospital, but were left to fend for themselves, hence the absence of something as basic as an IV stand. They were also anxious to highlight the ferocious battle faced by parents brave enough to take on the State. It took five years to get an admission of liability from the HSE. In fact, the conduct of the HSE and the State Claims Agency (SCA) in dragging out the case was even criticised by the High Court judge presiding over it. Ms Justice Mary Irvine said she rarely made remarks about the conduct of a defendant in defending a case, but Dylan’s was the second case before her in the space of a week where the HSE had delayed in admitting liability, causing additional stress and fear for the children and families involved. She described the HSE’s behaviour as “highly regrettable” and said such a course often suspends access to treatments that a child badly needs. In fact, experts agree that the more care and therapy a child like Dylan receives from an early age, the better the long-term outcome.
Dylan’s parents did their best, but with no answers and little help forthcoming from the HSE, they took matters into their own hands. They wrote to medical negligence solicitor Ernest J Cantillon on the recommendation of a colleague who advised Thomas not to take on the HSE on home turf.
“I was working as a care assistant with the HSE and I was working with people who had disabilities in Waterford. My colleague said ‘if you are going to do battle with the HSE, take it outside Waterford’.”
Mr Cantillon, who is Cork-based, took on the case, so there was a lot of travel back and forth and also to various parts of the UK — London, Leeds, Newcastle, and Kent — for expert opinion on what had happened to Dylan and the lifelong implications, physically, mentally, and financially. There were expert assessments by neurologists, some at very short notice. Thomas recalls having to pay £800 (€975) to fly home from Kent on one occasion. Fortunately for them, Cantillons funded the costs up front. Cantillons also commissioned independent medical reports, which Thomas says confirmed Dylan’s condition was caused by the mismanagement of labour.
“This is what we always suspected and what, indeed, the obstetrician told us was the position,” Thomas said after the HSE admitted liability.
However, long before the HSE accepted responsibility, Thomas and Jean asked Cantillons to write to the SCA — which manages claims on the State’s behalf — and to the HSE, setting out the findings of the independent medical reports. This was done on June 9, 2009. Thomas said Cantillons set out their case in considerable detail, but there was no response from the agency.
Legal proceedings were then issued. The family said, to their “surprise and horror”, the SCA put up a defence and denied everything.
“We could not understand and still do not understand how this happened, having regard to the fact that the obstetrician had admitted there was an error,” says Thomas.
“Cantillons’ independent reports found that there was an error. We knew there was an error. We believe everybody knew there was an error, which caused Dylan’s condition. Why did this happen?”
It took another three years and much expense and distress (with, at one point, the threat of costs being awarded against them), before an offer was made and even at that, it came 11 days into a High Court hearing. Thomas remains very angry with the manner in which the SCA behaved. He describes their approach as “one of poker, in which the SCA seek to take advantage of every slip-up to use it as a bargaining tool”.
After the case was settled, the family issued a statement in which they described how their son was “much planned and longed for” and how they had requested he be delivered by caesarean section. The request was on foot of Jean’s obstetric history — she had suffered complications during their daughter’s delivery, enduring a 51-hour labour followed by an emergency C-section — and had lost another baby at 16 weeks gestation. Jean’s request was ignored. In fact, when Dylan’s case eventually ended up in the High Court, Jean’s lawyers said she was told it would be a “feather in her cap” if she managed a normal, vaginal delivery.
In the event, Dylan’s labour stalled and Jean’s uterus ruptured and the upshot for Dylan was brain damage. With little assistance and few answers forthcoming, Jean and Thomas were propelled into what Justice Irvine calls a “litigation loop”.
Cantillons, seasoned in medical litigation, gets lots of clients “being stonewalled when they come out of hospital with an adverse outcome”, says Mr Cantillon.
He argues in favour of a duty of candour, ie, that the HSE and doctors be legally obliged to candidly tell a patient what went wrong. Cantillons has been campaigning for this, together with the Medical Injuries Alliance (MIA). The MIA, launched in 2011, is focused on promoting access to justice for victims of medical negligence.
Mr Cantillon says it is his firm’s experience that hospitals and health boards “deny everything and, in some instances, even deny that the patient was in the hospital”, but that when it comes “close to a day of reckoning in court”, the hospital and/or doctor “concede that what they did was wrong, and offer to pay compensation”.
“They often seek to buy off the case on a confidential basis, without having the decency to admit liability, and/or apologise,” says Mr Cantillon.
He says this conduct “comes at a considerable human cost”, as not only are victims of malpractice trying to cope with the event, but the manner in which claims are dealt with significantly accentuates their grief.
Unsurprisingly, Jean and Thomas describe their experience as “an ordeal”, with efforts to obtain better conditions for Dylan regularly stymied. For instance, while dealing with the SCA, a suitable home was identified and approved by engineers. The SCA was asked to make what Thomas describes as “a modest payment, on account” to allow them to buy the house. It refused.
Their current home is a two-storey with a narrow hall and no downstairs bathroom, so Dylan uses a potty. At six-and-a-half, he finds it embarrassing. The new house will have a specialised toilet that can wash and dry him and give him the privacy he needs. Thomas said it’s just one of the adjustments they could have made years ago if the HSE had admitted their mistakes and instructed the SCA to make amends. Dylan could also have benefited greatly from more physio and occupational therapy had the money been there.
“Without timely intervention, your child starts going backwards,” says Thomas.
They took him to the Bobath Centre for Children with Cerebral Palsy in London, where a comprehensive assessment was carried out and they were told Dylan’s requirements. The emphasis was on as much intervention as possible, and the earlier the better for the child. Jean says if they’d had the money sooner, they would have paid a physio and an occupational therapist to visit their home for extra sessions. The Bobath trip cost £8,000 for two weeks. Jean and Thomas believe many families find the cost of additional therapy prohibitive.
“We would have had things at a much earlier stage if we didn’t have to fight for everything,” says Jean.
However, it’s not just the cost of therapies that must considered, anything you do with a disabled child carries a higher price. An everyday example is the difference between swimming lessons for their daughter Shauna and lessons for their son. For Shauna, it’s €8 an hour, for Dylan €25 because of the additional assistance required. Horse riding involves two carers, one to lead the pony and one to hold Dylan in position.
Money, and lots of it, can help so much in Dylan’s case. Jean says when the school had to lay off his special needs assistant (SNA) due to cutbacks, they had the capacity to hire her themselves. The SNA regularly takes Dylan for walks in the afternoon.
He attends mainstream school in Scoil Lorcáin and has an average IQ, but significant short-term memory problems and “can’t do chitchat”. His parents say he can’t plan ahead or make executive decisions and has great difficulty recalling what he did during the day. Now, when he goes out with his SNA, he brings a 7in Samsung Galaxy and takes pictures of what he sees. In that way, they can chat with him about his adventures.
Thomas says money will also allow them avail of the best emerging technologies to help Dylan cope with the challenges of living. For example, eye-gaze assistive technology allows people with severe physical disabilities to access a computer. An in-built camera tracks where the eyes are looking, and the user can move the mouse pointer by blinking, dwelling (staring at the screen for a period of time) or using a switch.
Money will also allow them install suitable showering facilities when they move to a new home — which they have identified — and it will include a heater that dries him while sitting in a chair. “It means, as he gets older, he can have some privacy. At the moment, because his balance is affected, one of us has to dry him,” says Jean.
Money means the family can upgrade their transport to adapt to Dylan’s changing needs as he gets older.
While a substantial settlement cannot be underestimated in improving Dylan’s quality of life, Jean and Thomas are anxious to emphasise that they are still coping with a disabled child whose needs are infinite.
“People think the money we got is like winning the lotto,” says Jean. “It’s not. The money is for Dylan and we’ve got to get on with our own mess. His hands and legs are not very good to him. He needs a Second Skin [a special corset] to keep him rigid. He has epilepsy. We need a hell of a lot of support and we’re lucky in that we’ve great help from family, but we’re reluctant to leave him with anyone, especially at night time.”
Nowadays, through the network they’ve built up, the couple are asked for advice from parents whose children were injured as a result of what they feel was medical negligence.
“They tell us they’re thinking of going ahead and suing, but they’re not sure what to do,” says Thomas. “We tell them, if you’re going to take a case, you need buckets of money,” as, Thomas says, the HSE will fight to the bitter end. “There’s no humanity in it. We’re the innocent victims, yet we had to fight the State every step of the way.”