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Date: 10 August 2020

Time: 16:30

Juliet Baron's story

Juliet Baron thought she had a cold. As the weekend, in April 2006, progressed, she thought, no, this is the flu. She felt lousy but she never let a little illness get the better of her.

Guillain-Barré syndrome

She said: “I just thought I would get over it, everyone becomes ill every now and again. Then on Sunday I woke up and felt a tingling sensation throughout my whole body and thought this doesn’t feel right. I called NHS Direct and they said I should call the emergency GP. When I talked to him, he mentioned Guillain-Barré syndrome but passed it off as "a virus". I knew what he was talking about because my dad’s wife had had it. He said I should take some pain killers and if the symptoms got worse I should go to see my doctor or go to A&E.

“After that, I deteriorated quite quickly. On Wednesday, I woke up and was a bit delirious and couldn't stand up. My husband was out of the country on business so my dad and his wife Pam came up to help with the children and I went to A & E at the Alexandra Hospital in Redditch. My thoughts were, it’s just something you have to get on and deal with so I wasn’t particularly scared. In A&E I was given a lumbar puncture and an MRI scan and they diagnosed Guillain-Barré syndrome, though by that time I was too ill to really know what was going on.”

Guillain-Barré syndrome is a condition that triggers the immune system into going into overdrive – which attacks the nervous system.

Coma

Juliet said: “Once the diagnosis was made, on the Thursday, I was transferred to the Queen Elizabeth Hospital. I was in the High Dependency Unit. My condition was getting a lot worse so I was taken to Critical Care in the Neurosciences Department. They decided to put me in a medically-induced coma.

“The idea was to shut down parts of the body while I was fighting the infection. It also helped the clinical teams treat the symptoms. I remember a doctor saying you are going to go to sleep for a while and thinking, that’s okay, because when I wake up I will be well again. I didn’t realise then what was in store for me.”

With her husband back by her side, Juliet spent six weeks in a coma. During that time she was treated for double pneumonia and adult respiratory distress syndrome (ARDS), which meant both her lungs collapsed – both conditions linked with the illness and the need to be kept in a coma.

Juliet picks up her story again: “I was on a ventilator. Because of the illness, I needed eight tubes in my chest to drain air that became trapped between my lungs and my ribcage. Unfortunately I still have the scars to prove it, though they may fade over time.

Keeping everyone informed

“I was obviously unaware of what was being done for me. But afterwards, my family said the doctors and nurses always kept them informed of every development, no matter how small. They never felt they were being kept in the dark which was really important for them. In hindsight, I am very grateful for that because I am a very independent person and I would have hated thinking that I was causing unnecessary anxiety to other people.

“The other thing they said was that they really appreciated the personal care given to me as well as the clinical care. So, the nurses cleaned my teeth and washed my face every day. It’s those little things that count for so much sometimes. It’s about the respect they have for your dignity.

“Towards the end, I was slowly brought off the ventilator and drugs. It took two weeks or so. To be honest, it was a bit of a scary time because it was a very confusing time. The first thing I remember about communicating with a nurse was mouthing ‘when can I go home?’ and then finding I couldn’t move. One of the effects of the virus is to paralyse the body and I still couldn’t move a muscle. Eventually I could wiggle my fingers, then move a little more.

“I could recognise my family straight away and it was wonderful having them there supporting me. It was also really important to have the personal relationship with the nurses, especially. It made things a lot less scary. It also helped with communication because for a while I still couldn’t move or speak, because I still had a tracheostomy in place. I felt really rude not being able to say please and thank you for things.”

Complications

Juliet thought she was on the mend, but then there was a complication. Her lungs were just not strong enough to support her breathing. So a decision was made to attach her lungs to her ribcage.

She explained: “It was a bit like creating human scaffolding for my lungs. A specialist surgeon was brought in from another hospital. My chest was opened up and my lungs attached to my ribcage and some small bits of lung that had completely shrivelled up were removed. Then I was sewn up again. It did the trick because once I had recovered from the operation I began to feel a lot better and began to make progress. I could come of the ventilator but still needed oxygen delivered through my nose.”

On the mend

That led Juliet to her next challenge: physiotherapy. She said: “Because the virus paralysed me I hadn’t used my body for three months so it had wasted away. I had intensive physiotherapy every day. When the time came, just standing for a few seconds was really hard. The physiotherapists pushed me and pushed me to do things I really didn’t want to do. Just standing for an extra few seconds each time was exhausting. I realised that the harder I worked the sooner I could go home.”

After three months, Juliet was ready to move to a general neurological ward. After the intensive attention in critical care, it was quite a shock – but the experience also spurred her on again.

“Walking was still really hard. Going to the toilet with the aid of a walking frame took 20 minutes. After four months in hospital I was ready to go home. It was a very emotional time, partly because I had been looking forward to it for so long and partly because I was a bit scared of how I would get on at home. But I just had to get on with it.”

Welcome home!

While Juliet, from Alvechurch, in Worcestershire, had been in hospital, one daughter, Madison, had turned three and her other daughter, Yasmin, had her first birthday. Being at home with them after so long was a joy – and a challenge.

Juliet said: “Madison was wonderful. She is such a caring young person and we got back into the swing of things very quickly. Yasmin was a bit different. She hadn’t seen me for so long it took a little longer to re-establish our relationship.”

Also, her dad had let her get into some bad habits allowing an independent streak – a trait she must have got from her mum – to come to the fore.

“While I was in hospital, Yasmin had learned to go into the fridge to get her own food. At one point she did it and I said no but she just ignored me. I was still so weak from the illness that I didn’t have the physically strength to stop her so that was one little battle she won!”

A new challenge

Juliet says she finally felt fully on the mend a year after the illness first struck when she went back to work in May 2007. She is the Production Co-ordinator for Country File, a programme made at BBC Birmingham. Then she decided that she wanted a new challenge.

"After the illness I wanted to give something back. I set myself the goal of running in the five kilometre Race for Life, in support of breast cancer care. It was really painful training for it. I was still having weekly physiotherapy to build up my strength, but I did it. Then I thought, why not try a marathon and raise some money for Critical Care at the Queen Elizabeth.”

Why not indeed? Juliet applied for the London Marathon and did not get selected. So she applied for the Edinburgh marathon, was successful and began training: “At first I was training in secret because I wasn’t sure I would get a place. Eventually I was doing 30 miles and then 50 miles a week.”

In April 2008, Juliet ran the Edinburgh Marathon in a time of five hours, seven minutes and six seconds.

“In one way I wanted to prove to everyone that I‘m not ill any more and that they don’t have to call for a doctor every time I get a cough. It hasn’t quite worked yet. People still worry about me!”

Juliet also raised £5,000 for the Neurosciences Critical Care Unit at the Queen Elizabeth Hospital, part of University Hospitals Birmingham NHS Foundation Trust.

She said: “The people who work there are special. They have to be to do what they do day in and day out. Until I had really needed the NHS I didn’t realise fully what it is all about. I see things very differently now. It’s just a respect I have for what they do. My being ill was traumatic for everyone involved but everyone in the Critical Care Unit allowed life, for us, to go on. I will always be grateful to them for that.”

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