Saturday 22 November 2014

‘It started with a simple cold and ended with me being admitted to a psychiatric hospital...’

Doctors thought Audrey Frost was having a breakdown when, in reality, she was suffering from a rare, life-threatening condition called Guillain-Barré syndrome

Leslie Ann Horgan

Published 22/07/2014 | 02:30

Audrey Frost, pictured with daughter Abby, fears the syndrome will return. Photo: Ronan Lang.
Audrey Frost, pictured with daughter Abby, fears the syndrome will return. Photo: Ronan Lang.

‘I was in a lot of pain but it’s nothing compared to what my mam and dad went through,” says Audrey Frost with a shudder. Mum to five-year-old Abby and expecting her second baby, the 39-year-old Dubliner knows the unique agony of seeing your child unwell.

Motherhood has brought home to Audrey the terrifying ordeal that her own parents went through when, 18 years ago, she was struck by a rare disease which caused her to become locked in to her body.

With doctors at a loss to explain what was wrong, her body began to shut down, leaving Audrey unable to walk and struggling to breathe.

What started as a simple cold would bring her to the brink of major organ failure and leave her just hours from death.

A bright and bubbly 21 year old, Audrey had been looking forward to spending the Christmas of 1996 with her family in Beaumount, north Dublin.

Having graduated with a first in business management from Trinity College just a couple of months previously and with a new job lined up, she was excited about spoiling her infant nephew Keith — the first grandchild in the family.

When Christmas Day arrived, however, Audrey was feeling under the weather, dogged by a cold and upset stomach that she couldn’t seem to shake.

“It started out as a cold, nothing major,’ Audrey says. “As the days went on, though, my head didn’t feel right and I just wasn’t myself.”

“Being Christmas, all the family were round but I couldn’t sit and talk to them. I felt too sick and weak so I stayed in bed. I had pins and needles in my legs and I struggled to do simple things like get to the bathroom.”

For the next few days, Audrey was bedbound and throwing up. By December 27, she had become so ill that her parents, Eddie and Marie McCabe, called their GP to the house.

Her worsening condition was monitored over the following days and the doctor ultimately recommended that they take her to hospital.

As well as being physically ill, Audrey had also begun to receding into herself. Her speech was slurred and she was unable to communicate coherently.

She doesn’t remember much of what happened when she arrived at A&E in Beaumount Hospital. “It’s all a bit of a blur after that,’ she says. “I had a feeling of weightlessness and I was totally out of it. I remember going outside and I said to my dad, ‘oh look it’s snowing, isn’t it lovely?’ It had been snowing for a few days by then but I had no recollection of having seen that.

“I have snatches of conversation between my mam and my sister-in-law, who is a nurse, but not much else. I do remember the doctors asking my parents whether I could be pregnant and me getting mortified and angry about that. I was there for a couple of days and then they sent me home.”

Over the next week Audrey’s condition continued to worsen and her worried parents brought her to A&E only to be sent home again. When she all but stopped talking, her frantic father rang an ambulance in the hopes that she would be admitted to the hospital.

“They finally took me in and I was on a bed in a corridor for a few days. I can’t remember too much of it. The doctors later told me that I was likely to have been in so much pain that my mind was protecting me from that and it won’t let me remember.”

At the time, however, it was decided that there was no physical reason for what was happening to Audrey and she was diagnosed as having had a mental breakdown.

She was transferred to a psychiatric ward in St Vincent’s. It was a heartbreaking moment for her distraught parents.

“I have a lot more memories of being in that ward, my awareness started to come back much more strongly then,”Audrey says.

“I remember one night I needed to go to the toilet and I was ringing the bell but no one came.

“I was looking at my watch and three-quarters of an hour passed. So I got out of the bed and fell and cut my chin.

“I knew I should be able to do this so I crawled to the toilet, but then I didn’t have the strength to come back. Eventually I crawled back in and the nurses found me on the floor.

Health Audrey Frost.jpg

“They had me on Prozac and were trying to integrate me on to the ward. It was an open facility but I wasn’t well enough to leave. Each of the patients had a job and there were meetings in the mornings. They all complained because I wasn’t making the tea.

“I remember watching that conversation and thinking, ‘I should not be here.’ I was mentally fine but I physically couldn’t do what was expected of me. I said to myself, ‘If my parents walk away from me now, I could be here forever.’ That was a really scary moment.”

 

Thankfully, Audrey’s parents remained unconvinced of her diagnosis and pushed doctors to keep testing her for physical illnesses. “Luckily enough they are who they are and they wouldn’t accept that diagnosis.

“They kept telling the doctors I was bubbly and happy and I had no reason to be depressed. They both insisted that there

had to be something physically wrong with me.”

Audrey’s parents were correct — she was suffering from an extremely rare condition called Guillain-Barré Syndrome (pronounced Ghee-lan Bar-ray). Also known as acute post-infective polyneuritis, it strikes just one in 100,000 people.

An autoimmune reaction triggered by an infection such as a cold, Guillain-Barré causes the immune system to attack the body instead of the virus. It specifically targets the myelin sheath which lines the nerves.

Without this sheath, signals from the brain which travel down the nerves are lost. Generally the arms and legs, which are the furthest point that signals have to travel, are the first to be affected.

With nothing to command them, the muscles stop working and the body begins to shut down.

Outwardly, Audrey’s motor control was the first to go and she no longer had the strength to support herself.

This led to what she describes as the worst experience of her life.

“The worst day was when the doctors came in and asked me to stand. I fell over but they said that there was nothing wrong and I needed to get myself up.

“They watched as I crawled to a chair and tried to haul myself up. Four of them stood there watching me, saying, ‘come on now,you need to start looking after yourself.’

“I had been three weeks in hospital at this point and they still couldn’t find anything physically wrong with me, so I suppose they have to push psychiatric patients. But it was the worst experience of my life.”

Fortunately, that experience was relatively shortlived thanks to her dad who pointed out to the medical staff that her mouth had slumped at one corner, as if she’d had a stroke.

“I’d been in Vincent’s a week. One doctor there kept a close eye on me and when my dad pointed that out he did some tests.

“They showed that my reflexes were gone and my breathing was starting to go. That’s not something that you can control voluntarily so it proved that I had a physical rather than a mental problem.”

Audrey was brought back to Beaumount hospital where she was seen by leading neurologist Dr Orla Hardiman who ordered a spinal tap.

The procedure was excruciating but the results would finally lead to a correct diagnosis of the mysterious disease that had struck the young graduate down.

“Dr Hardiman came in soon after and said: ‘We know what it is.’ The hospital called my parents in and, knowing she was a neurologist, they were afraid it was a brain tumour. When she told them about Guillain-Barré Syndrome they were so relieved. My dad said: ‘I know you are going to go through hell but I’m so happy because at least we know what we’re dealing with.”’

Guillain-Barré Syndrome can affect people of both sexes and all ages, although it’s more common in the elderly, especially those who smoke.

It begins with pins and needles in the limbs, which becomes a paralysis that can spread to the spine, stomach and face.

One in four people who contract Guillain-Barré Syndrome will have the nerve signals to their lungs affected — which can be fatal unless they are put on life support with a ventilator to breathe for them.

The condition is usually treated using blood transfusions which flood the system with new platelets to boost immunity. Another option, which Audrey’s doctors decided on, is to inject immunoglobulin to provide fresh platelets.

Costing €5,000 each, Audrey needed five of these injections a day — she would go on to have 25 in total. Before the first batch could take effect, however, her health took a dramatic turn for the worse.

“I was in the high dependency unit and after they gave me the injections I got a headache that felt like my head would explode. My blood oxygen dropped dramatically and my breathing got very shallow. My sister-in-law had come in to visit and they told her to get my parents to the hospital right away because things were looking very bad.”

Audrey’s blood oxygen levels had dropped to 80pc, the point where her oxygen-starved organs began to fail. “I was transferred to intensive care and I remember being there, hooked up to machines with people around me dying and I just couldn’t understand why I was there. They were on the verge of intubating me when I started to come round.”

After three days in ICU, Audrey returned to the high dependency unit to continue her injections. The treatment was effective, and over the following weeks she recovered enough to sit up and speak clearly.

When she was sufficiently strong she underwent physiotherapy to learn to walk again. After a total of six weeks in hospital her overjoyed parents were allowed to bring her home.

Eighteen years on, Audrey is the marketing manager at Canon Ireland. Married to 42-year-old Paul, a

channel manager with Fujitsu, they live in Ratoath, Co Meath, and dote on daughter Abby.

Though Audrey made a remarkable recovery, Guillain-Barré Syndrome had some lasting effects on her health. “I suffer greatly with tiredness ever since,” she says. “The strength in my hands went, too. I struggle with things like buttons because I don’t have the dexterity any more.”

Also of concern to Audrey is the chance that Guillain-Barré Syndrome could reoccur, which is common in sufferers. Despite it being such a rare condition, her English-born husband Paul’s aunt also contracted the disease when she was pregnant and became very seriously ill.

Understandably then, pregnancy is an anxious time for Audrey.

“It’s something that’s in the back of my mind all the time. But everything was fine with Abby so I’m hopeful that it will be the same story this time.

“I was lucky, though, because some people are left with much more serious effects from Guillain-Barré. There’s an actress in Hollyoaks(Kelly-Marie Stewart) who was left paralysed and in a wheelchair.

“The doctors said that being 21 and fit when I got the disease was what saved my life.”

Arguably it was her parents who ultimately saved her life — their insistence that there must be an explanation for her mystery illness was what eventually led to the correct diagnosis.

“It was a horrible time for them,” Audrey says. “From thinking that I’d had a breakdown to a brain tumour… I can only imagine how upsetting it must have been. They are just so grateful that I came out the other side, and I’m so grateful for their love and support, and the fact they never left me on my own through it all.”

For more information on Guillain-Barre Syndrome, contact the Britain and Ireland support group at

www.gbs.org.uk

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