What's life like after meningitis?

Despite meningitis being a deadly disease, 90 per cent survive, but a significant number will have life-altering effects, writes SHEILA WAYMAN

MENINGITIS NEVER crossed the mind of Róisín Hartley when her 10-month-old son Callum seemed to be suffering with his ears and throat.

She, her husband Eamonn and their baby son were in Dublin with her mother that weekend, in August 2007, and went to a doctor who agreed it was probably due to teething and put him on an antibiotic.

As both she and Eamonn needed to go to work on Monday, Róisín’s mother went down to their home in Offaly to mind Callum.

“He wouldn’t take a bottle, even taking water he was vomiting it back up. My mum was trying to pacify him and – I only thought about it afterwards – the light at the patio door, he kept closing his eyes.”

After she got home from work on the Monday, they said they would give it another day and see if there was any improvement. He was still no better on Tuesday, had a high temperature and seemed to be “sleeping a lot”. They were concerned that he must be very dehydrated and took him to Mullingar General Hospital, where he was kept overnight.

The next morning, the doctor was concerned that Callum “looked very lifeless”, says Róisín. “Out of the blue they said they would do a lumbar puncture to see what it could be.”

Having been in the hospital overnight, Róisín headed home for some rest while they awaited the test results and Eamonn took over.

“I was barely on the way home and my husband called me back. He was roaring and crying on the end of the phone.” Callum had pneumococcal meningitis.

“I don’t know why I never thought of meningitis, even when they did the lumbar puncture,” says Róisín. “He didn’t have a rash. The first thing you always think of is the rash.”

Doctors told them afterwards they were very lucky. “They said if they hadn’t done the lumbar puncture and started the medication that afternoon, we would have lost Callum – it was that close.”

The Hartleys were warned that Callum, who spent four weeks in hospital, could be brain damaged; he could have problems with his hearing or vision and he might have learning difficulties.

Meningitis is a deadly disease, which can hit anybody at any age but is most likely to occur under the age of five and particularly under the age of one. (Of the roughly 400 cases that occur in the 32 counties each year, up to 10 per cent are fatal.)

What is perhaps less well known about the disease is that 20-25 per cent of people who contract it will be left with life-altering effects. In the case of babies, these may take years to become apparent.

So what determines the outcome for somebody suffering from meningitis?

“Speed is of the essence,” says Carole Nealon, the manager of the Meningitis Trust, “speed of diagnosis, speed to the doctor or hospital and speed of response by medical staff.” All GPs carry a shot of benzyl penicillin in their bag for when they suspect meningitis, she says.

Meningitis is a swelling of the lining around the brain that can be caused by different organisms, including bacteria, viruses and fungi. The fatal cases are usually bacterial meningitis and, in Ireland, that would most likely be type B meningococcal disease – usually a combination of meningitis and septicaemia (blood poisoning).

“Sometimes the bacteria can be a very strong form of the disease and there is nothing that can be done, unfortunately,” says Nealon.

Meningitis is difficult to diagnose because it can mimic the symptoms of flu-like and other childhood illnesses, such as high temperature and headache.

“People get very fixated on the rash,” says Nealon. But the rash only occurs when there is septicaemia and it also comes very late in what is a rapidly developing disease.

For 27-year-old Norma McCarthy, it was the septicaemia that did all the damage after she contracted type B meningococcal disease at the age of 15.

She had had a minor fall and when she could not stand or respond to her parents the following morning, doctors at Limerick Regional Hospital suspected a head injury. It was only when she was taken for a scan that “they saw a rash had appeared on my stomach. They knew straight away what it was,” says McCarthy from her home in Kilcornan, Co Limerick.

Needing dialysis, she had to be transferred to Cork and the family was told she had a 50/50 chance of surviving the journey.

Within two days, both her legs had to be amputated below the knee and she spent four months in intensive care, in a medically induced coma. She also lost the tips of two of her fingers and her gallbadder had to be removed.

When she woke up four months later, she could neither move nor talk. It was a long road back to resuming school two years later in a wheelchair, after a stay at the National Rehabilitation Hospital in Dún Laoghaire, Co Dublin.

“You have to get on with it; there is no point in looking back,” says McCarthy, the second eldest of four children, paying tribute to the support of family and friends, particularly her mother Anne (“She was the rock who held it all together”).

McCarthy lives at home and is very independent; she has her own car, goes to the gym regularly and hopes to get back into horse-riding. Walking on her prosthetic limbs is difficult only when she is very tired or on uneven ground in unfamiliar places.

Meanwhile, the Hartleys have watched anxiously for signs of after effects in Callum. If they called him and he did not respond, “we were saying to ourselves, ‘Maybe it is his hearing,’ but it was just he didn’t want to answer. You are kind of worrying. You don’t want your child to be different. We were just so lucky.”

When Róisín Hartley, a wage clerk, went back to work after Callum’s illness, she could not focus and wanted to be home with him, so she gave up her job the following January.

Callum, her “little terror”, has just turned four and loves football and annoying his little sister, 11-month-old Layla Rose.

However, last month his Montessori school called and said his attention span was not great. “When he is in a small group he’s fine, but when he’s in a bigger group he tends to get overwhelmed by what is going on and not concentrate on what he should be doing,” she says.

As soon as Callum was diagnosed with meningitis, his mother found the Meningitis Trust in an internet search and has been involved with it since. It focuses on supporting families affected by meningitis, as well as raising awareness.

Hearing problems are quite common after meningitis, says Nealon. Persistent headaches, tiredness, poor concentration, short-term memory loss, depression and epilepsy are other possible after effects.

Behavioural problems may also be evident, such as bed-wetting and temper tantrums, and children may regress in areas of development such as toilet training. Parents don’t always associate these with the disease.

“Sometimes, the learning difficulties don’t show themselves until the child is in school. They are slightly disruptive; they don’t have concentration, so they can’t finish tasks, and then they can be labelled, which is very difficult for kids.”

Schools should always be told if a child has had meningitis, even if it was years previously, Nealon says.

The trust offers home visits by community nurses and professional counselling free of charge. It also organises peer support and sources and funds play therapy to help children work through issues.

Four years on, Róisín still cries over Callum’s close brush with death. “It will take a long, long time to get over.”

INFORMATION AND SUPPORT

The Meningitis Trust (meningitis-trust.ie) runs a free 24-hour helpline, 1800-523196, and sends out free cards detailing symptoms.

The Meningitis Research Foundation (meningitis.org) also runs a free 24-hour helpline, 1800-413344, and a one-minute video on the symptoms is available by texting “Time” to 50308.

A new charity, ACT for Meningitis (facebook.com/ACTforMeningitis), was launched last week by a Galway couple, Siobhán and Noel Carroll, who lost their daughter Aoibhe to the disease at the age of four in 2008.

‘We were told how sick our boy was and that there could be huge implications with brain damage’

Bridie McLoughlin is learning how to use play therapy to help her youngest son, eight-year-old Mark, to deal with problems believed to be the legacy of having meningitis four years ago.

The therapy has helped Mark, who has learning difficulties and concentration issues, settle in school. He repeated first class and is now waiting to be assessed for dyslexia.

They will never know for sure if this is all linked to the meningitis. “I have to say honestly he has always been a little hyper – he walked at eight months,” says McLoughlin, but she is just grateful Mark is “alive and well”.

She and her husband, Ivan, had been on a rare Saturday night out to celebrate both their birthdays when they returned to their Co Mayo home to find Mark running a temperature. They stripped him and gave him paracetamol, but that did not bring the temperature down; after a tepid bath he settled for the night.

When Bridie returned from Mass the next morning, April 1st, 2007, Mark was on a chair “looking like a rag doll”.

Spotting a rash, she rang the out-of-hours doctor service and was advised to do the glass tumbler test (the spots will not blanch if it is meningitis). “The rash disappeared so I said, ‘Great, it’s not that.’ ”

As he deteriorated, they brought him to the doctor who said to give him Calpol and keep an eye on him. Mark complained of a sore head and started to get sick.

After several phone calls and a return visit, the doctor said he still did not know what was wrong. Ivan asked if they could bring Mark to hospital, Bridie says, and the doctor gave them a referral letter.

The journey from their home in Attymass, outside Ballina, to Mayo General Hospital in Castlebar, about half an hour away, was agonisingly slow because the Mayo football team were playing and the traffic was bad.

“Mark was slipping in and out of consciousness at this stage and his eyes were rolling in his head.”

At the hospital he was taken straight to the children’s triage room. “Within 10 or 15 minutes they had identified a couple of purple spots as septicaemia,” she says. He had just three or four, “like dots from a biro”, on his groin and on his neck.

The consultant told them they were treating it as suspected meningitis and were taking him to ICU to administer antibiotics and do a CT scan. “We were told how sick our boy was and that there could be huge implications with brain damage.” They were also warned that the blood poisoning could necessitate amputations.

It was after midnight before they saw their son again and when Mark woke, at 1.30am, he did not recognise his mother. “He didn’t look as if he had seen me and couldn’t hear me talking to him, so of course I had the worst fears ever,” says Bridie. “He went back to sleep, woke up at 5am looking for his daddy, and from there on he was on his way back.”

His older sisters, Ciara and Emer, now aged 13 and 11, were cared for by friends, but it was upsetting for them. “They thought he wasn’t coming home.” However, Mark made a rapid recovery and was discharged from hospital in just over a week.

Looking back, Bridie thinks if she had had a meningitis symptoms card at the time, she would probably have acted faster.

The whole episode showed them that you can’t live without family and friends, says Bridie, and she will always be grateful for what they did during that traumatic week.

“It is a good experience to have that come out well,” she says. “You have all the worry and upset, but I would say it made us stronger.”

TRUST YOUR INSTINCTS: Children get ill differently and more rapidly

Meningitis is the leading cause of death from infectious diseases among Irish children, but huge progress has been made in developing vaccines against various forms and the number of cases in Ireland has halved in the past 10 years.

“The future is very bright,” says Clodagh Hegarty, medical information officer with the Meningitis Research Foundation.

However, meningitis is still a deadly disease and we are coming into “meningitis season”, she warns. The hardest thing is to recognise it, and she reiterates the advice of “trust your instincts” to parents. “They tend to get ill in a different way and much more rapidly.”

The national childhood immunisation programme has incorporated vaccines against forms of meningitis since 1992, with a type C vaccine introduced in 2000 and protection against some strains of pneumococcal meningitis added in 2008; this was upgraded in 2010.

But a big concern is a recent fall-off in parents bringing children for their immunisation visits at 12 months and again at 13 months.

“These are all boosters and if they don’t get the boosters, they are not covered, as their immune systems are still developing,” says Hegarty.

There is still no vaccine against the most common form of meningitis in Ireland, meningococcal group B disease, but a drug company hopes to secure a European licence for one in the new year.