‘If it happened to our son, it could happen to others’

Tuesday, July 10, 2012

LIAM Cunneen-McCormack turned five in April.

Like any couple, his parents marked the occasion by thinking back on the milestones of his life.

His first smile. His first tooth. His first step.

The first time he didn’t respond to a sudden noise, drilling and building work throughout the house; his own parents’ calls.

The first time they told each other to believe the experts they trusted and who kept assuring them nothing was wrong, despite their concerns.

The first time they found out a report warning of profound deafness in their child and calling for him to be treated “as a matter of urgency” — a result not shared with them — failed to be acted on for 17 months.

The first time they realised the impact the delay and repeated misdiagnoses will have on their son’s life.

Liam, and active child, is just like any other child his age. The only difference is he is severely deaf, a diagnosis which was significantly delayed due to errors by a service responsible for his care.

“I have an entry in my diary from early Feb 2009. ‘Liam perfect, won’t have to be seen for another six months’,” his mother, Julie, who is deaf, says while sifting through the raft of files she has collected on what happened to her son.

“I remember coming home and ringing my husband. Even calling him after the next test that June saying ‘It’s great, it’s great, Liam’s passed’. That sense of relief. We were told three times everything was fine. Now he’s in a school for the deaf and nobody knows his long-term prognosis, ability to get a job, have a home, provide for himself, find a wife or girlfriend.

“We have to get as many answers as we can now, so he’s not looking at us in 20 years time saying ‘there was a failure and you accepted it’. This should be a wake up for other parents, to be aware there could be a failure in their children’s diagnoses as well.”

Wiping away tears, she goes back over the days when she and her husband, Keith, were forced to face every parent’s worst nightmare: That their child has a serious condition, and that those they are dependent on for him repeatedly fail to identify the problem.

As Julie has been profoundly deaf since an early age — the cause of her condition is disputed — the couple sought and were given assurances by the HSE before marrying any offspring would not be affected.

“I had viral meningitis at two and a half. When I got to about six my mum noticed my hearing was getting much worse. We went to four or five specialists around the country who all said they found it quite unusual as viral meningitis is not supposed to do any damage to hearing, and definitely not that long after an episode.

“There was a question of whether it was genetic deafness, but my file said my hearing loss was not genetic. So when me and Keith asked if our kids would be okay, we were told twice that it was definitely 100% caused by meningitis.”
Suitably reassured, the newly married couple had Liam, who was born on Apr 26, 2007. They were “over the moon, so excited” at starting a family. A routine newborn hearing test came back clear, and the McCormacks breathed a sigh of relief.

When they were called back 18 months later, in Jan 2009, for the first of three “precautionary” follow-up checks — unknown to the family, it was because Liam was initially seen by the audiological scientist at the centre of a multiple misdiagnosis probe — alongside 25 other families, the alarm bells didn’t ring.

“I was told, reassured, that because of my history they would continue to follow-up on Liam, that he wouldn’t be dismissed from the services, so we just thought that’s what it was about,” says Julie. “I arrived in with Liam and Sally O’Dwyer [then head of the Cork service, now in charge of newborn hearing screening at Cork University Maternity Hospital] was sitting there. I goes ‘God, hello, strange to see you, what are you doing down?’ So we’re chatting away, all very relaxed, and she says she’s doing the tests. She brought me into the office first, sat me down and said, on the quiet, look there’s no risk to Liam whatsoever. It’s just a precaution.

“There was no mention about concerns about [the previous worker], or that the tests were not recorded properly. So as far as we knew everything was fine.”

Ms O’Dwyer — who is not the unnamed worker at the centre of the 2001-2007 misdiagnoses — oversaw a further test alongside another colleague in Feb 2009, which again found Liam had no hearing problems, followed by an independent test by two British audiologists on behalf of the HSE South that June.

“He’d seemed quite distracted after the third test, but they didn’t seem that worried.

“I left, called Keith, and said he’s great. Everything’s OK.”

Having been told three times there was no issue, and having been given the all-clear both before Liam was born and immediately after his birth, the McCormacks settled down to normality. The nagging doubts beginning to play on their minds were passed off as the usual parental paranoia. When Liam didn’t look up to greet his dad after work, they believed he was distracted. Sleeping through heavy building work in the house just meant he was tired. Not responding to the doorbell or phone was something he picked up from his own mother’s actions.

Even concern from two pre-schools were pushed to one side.

Julie pauses. “You think back now and think, what kind of parent am I, I should have picked up on it. But everybody else was saying there was nothing wrong with him.

“Then the teacher at the pre-school started to complain about him in late 2010, saying his behaviour was unreal. She started saying he might be deaf, and I got angry. I said she’s just saying this because I’m deaf, and I more or less out of spite took him back to the HSE service to prove her wrong.”

Keith rang the service, and was told there would be “at least” a two-year waiting list before Liam could be reviewed again. Julie did not accept the delay, drove her child to the centre and, in tears, demanded he be re-checked. “I started bawling and said the pre-school thinks he’s a monster, that he’s not like that at home so there must be something going on. I wanted a test to show nothing was wrong.”

A staff member who knew Julie due to her own long-standing treatment took pity on her and passed the message on to Ms O’Dwyer. Two hours later they were told to bring Liam in the next day.

This was Nov 15, 2010, a full 17 months after the British test the McCormacks were told came back clear.

“The person testing Liam [Charlotte Fairweather] was very professional, but her face betrayed her. She wouldn’t say anything, but a deaf person is very quick to pick up reactions like that.

“She went out of the room, came back and looked quite upset. She kept saying can your husband come back in with you tomorrow, can he come in.

“I was panicking. I knew something was wrong. I tried to pull it out of her, but she wouldn’t discuss it alone.”

Julie and Keith returned to the HSE service the next day, and watched as Liam was again tested, this time by Ms O’Dwyer, who was assisted by Ms Fairweather. He didn’t respond.

“We were in shock, total shock. We kept asking what happened, you said he was fine, but Sally didn’t want to talk about prior testing... She started reading through his file and said something about failing in his left ear in 2009. It was news to us, so we asked for the file and she refused point blank. Just closed it up. So I requested it under the Freedom of Information Act.”

What the McCormacks found was startling. Far from passing Liam in June 2009, the two UK audiologists had sent back a report to the Cork service stating: “No sufficient results with VRA [visual reinforcement audiometry]. Failed screening in right ear.” They concluded the little boy had an “overall fail” and recommended he be referred for another re-test or treatment “as a matter of urgency”.

The report had been requested by the HSE South, and an electronic version had been sent back to the Cork service three days before a senior local official accessed Liam’s file on Sunday June 21, 2009. The report would have been the first on the list of the online file. However, nothing was done.

It took 17 months and a mother insistent that a serious problem had been missed before the error was uncovered. This took place in the midst of major reform of the system and at a time when a detailed independent report on a series of previous child hearing misdiagnoses was concluding that a worker who had since left the system was solely responsible for previous mistakes.

It made it all the more difficult for the McCormacks to take on board.

“Sally just said the UK people were meant to ring her or email her if any child needed to be reviewed. That’s ludicrous. There’s three people working in the Cork service. They requested the tests because they wanted to make sure nothing was wrong.”

On Feb 7, 2011, Michael Butler, who was then head of the HSE South hearing service and is now in charge of nationwide neonatal hearing screening, wrote to the McCormacks expressing his concern over what happened, stating: “I am more than happy to communicate with you and wish to start by saying again how sorry we are in the service to have let Liam down. Obviously, we are also full of regret and apologise for the stress on you and your husband.”

However, a subsequent meeting between the family, Mr Butler and Ms O’Dwyer led to more frustration.

At the meeting, the McCormacks stressed that, if the officials were “100% honest with us” over what happened, “we would not hold anything against them”.

“We said if the HSE were able to give Liam the best treatment to make up for what happened, we would walk away from it [the misdiagnosis] and never mention it again.”

In their view, this has not happened.

According to the McCormacks, Mr Butler did not identify himself as the complaints officer for the region’s service — a fact the family were not made aware of until seeking to go down this route some months later.

A request to have Liam sent for genetic testing in Beaumont, which they were told would be sought immediately, was not made until late 2011 — six months later.

As a result, Liam was only seen by Prof Andrew Green, one of Ireland’s foremost consultant geneticists, who has sent the five-year-old for genetic testing to clarify if his condition is family-related. The McCormacks have always insisted this is the case.

While Liam has received a cochlear hearing implant — effectively inner ear surgery — in his right ear at Beaumont, he will have to wait at least another two years for a similar implant for his left ear. They have been told this is due to cutbacks.

Worse still for the McCormacks, an independent report on how Liam was repeatedly misdiagnosed, and how a test saying he needed to be reviewed “urgently” was not acted on, said the scandal was just an “unfortunate systems error”.

“It does appear extremely unfortunate, but there was a systems error; the local lead audiologist was in fact not aware that Liam required a further review as this was not communicated to her,” the report by Dr Gary Norman, an expert audiologist who has worked at Beaumont and also provides a service to CUMH’s neonatal hearing screening, said, adding: “Liam had robust audiology assessments up to and including the assessment of June 18, 2009.”

To the family, the document is a “whitewash” which does not address who is responsible for what happened.

All of these further difficulties took place in the months immediately after the findings of the major 2001-2007 previous misdiagnoses investigation insisted serious issues in the system were being resolved.

The McCormacks have lodged a complaint with the office of the Ombudsman for Children, Emily Logan.

A spokesperson for Ms Logan said the state organisation could not comment on ongoing cases, but confirmed an investigation is taking place.

A solicitor acting on behalf of Ms O’Dwyer also said that, as the HSE South was currently dealing with the matter, it would be inappropriate for his client to comment at this time. Ms O’Dwyer did not return phonecalls by this newspaper.

For a case with as long-reaching implications for the child involved as this, it is perhaps unusual the HSE accepts the facts as put forward by the McCormacks.

But, as Julie is herself deaf and asked most of the questions on behalf of her son, the answers came in written form. The HSE’s acceptance of what happened is there in black and white. It cannot be refuted.

A senior HSE South spokeswoman told the Irish Examiner the organisation did not comment on individual cases, and declined to pass on queries to Ms O’Dwyer. However, the spokeswoman accepted the service “has acknowledged and apologised for a delay in the treatment of one child”.

She said “no further cases of delay or misdiagnosis have been identified” in children who were re-checked alongside Liam, adding that a series of service reforms have been put in place since the 2001-2007 review which occurred before Liam’s misdiagnoses.

They include:

* Additional staff appointed to the service;

* “Significantly improved” equipment and training;

* “Improvements in clinical governance (eg, two clinicians now review each audiological assessment for those under five years old)”;

* Community paediatric audiology services centralised at one facility;

* The introduction of newborn hearing screening for all newborns, described as “a significant development in audiology services”.

The spokeswoman also stressed that despite the controversy over how Julie was finally told of her son’s condition, which cannot be stated here for legal reasons, “clinicians adhere to the Informing Families guidelines”.

The situation jars with what Julie or Keith are now facing three years after Liam underwent the first precautionary hearing test which insisted his hearing was normal.

In early 2009, just after the procedure took place, the McCormacks and 25 other families received an official HSE South letter confirming each family’s individual result, and giving Liam’s hearing the all-clear.

Three years on, Liam’s case file now includes two incorrect sets of results; one request for an urgent referral which was not acted on until an hysterical parent refused to accept a two-year wait for a re-check 17 months later; profound deafness; speech and language problems; and yet more delays for a vital cochlear hearing implant.

The McCormacks are far from “reassured” Liam’s post-review misdiagnosis is the only new error to have taken place. They do not believe the HSE’s statement that Liam is the only new misdiagnosis involved.

“We need a review of the review. We believe other children are at risk,” says Julie. “If it happened to our son, it could happen to others. There is no such thing as ‘an unfortunate systems error’.”

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