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Woman in ‘locked in’ syndrome for 9 years after tummy bug

A newly-married woman has been left trapped in her body for nine years after she was struck down by a tummy bug. 

Rosemary Baker believed she was suffering from a run-of-the-mill norovirus infection, however it escalated into a heart attack which then caused her to become trapped within her body. 

The health disaster took place immediately prior to her Seychelles honeymoon with new husband Philip.

Mrs Baker entered a semi-comatose state, where it’s believed she can understand everything others do and say, but can’t react to them. It is known as locked-in syndrome.

Now her devoted husband, who enjoyed just one year of marriage to Rosemary before she was taken ill, finds himself grieving for the life they planned together but will never enjoy. 

Mr Baker has started a fundraising campaign to pay for a new treatment he believes could help his wife.  

Rosemary first became ill with the norovirus sickness bug in February 2009. She recovered but became ill again in May of the same year.

A minor viral infection led the then 42-year-old to suffer a cardiac arrest

When Rosemary Baker became ill with a tummy sickness bug, she expected to get better after a few days' rest

Rosemary Baker was left with a condition called locked in syndrome nine years after suffering a near fatal heart attack

'It is a bit like a death that you can't properly grieve, but how terrible would it be for someone who is locked in to have their loved ones abandon them?'

‘It is a bit like a death that you can’t properly grieve, but how terrible would it be for someone who is locked in to have their loved ones abandon them?’

'There's a 60 percent chance that she will stay as she is but that means there's a 40 percent chance that she will show some recovery, and she's getting better every year,' says Philip

‘There’s a 60 percent chance that she will stay as she is but that means there’s a 40 percent chance that she will show some recovery, and she’s getting better every year,’ says Philip

Philip, who lives in the house he and Rosie shared in Southampton, explains how hard it is to see the woman he loves unable to communicate and describes the situation as being ‘like a death you can’t grieve’.

The couple met through work at an engineering firm in 2001 and began dating in 2006. They were married on April 5, 2008, and were planning on honeymooning in the Seychelles – a trip that didn’t happen as by that time, Rosemary was in a coma.

Philip continues to grieve for the life they had planned together.

They were going to sell one of their houses and open a cattery together. The couple had been looking at possible locations across the UK.

Philip smiles fondly as he remembers Rosemary was adamant about her favourite: ‘the one with two swimming pools!’.

They had a wide variety of shared hobbies: researching family history, going for long walks, their pets – three cats and two dogs, and music. At the point that Rosemary became ill they had just bought her a new car, as they were planning on touring the UK, and she was excited about a job she was set to start.

Doctors couldn’t tell what was wrong 

Rosemary first became ill with the norovirus sickness bug in February 2009. She recovered well but became ill again in May of the same year.

She felt so ill she told Philip she feared she was dying, but the couple were reassured by a trip to the doctor and Rosemary was told to go back for blood tests if it wasn’t better in a couple of weeks.

Philip felt concerned that Rosemary seemed really poorly and they agreed that, as it was a bank holiday weekend, she would go for tests sooner, on the Tuesday.

That Monday, Rosemary seemed to have improved and Philip went out to run some errands.

He returned to their house to find Rosemary had collapsed on their bed, was white and not breathing.

Philip called 999 and performed life-saving CPR while waiting for an ambulance to arrive.

Her heart stopped and had to be restarted several times, but the damage was done: her brain was starved of oxygen and she fell into a coma, from which she has not fully woken today.

Philip discovered that sickness and diarrhoea had caused her potassium levels in her blood to become dangerously low, and resulted in a catastrophic heart attack.

Rosemary was transferred to a hospital in Bath for assessment before being moved to a neurological rehabilitation centre in Wiltshire.

Since then, Philip has often found himself battling to ensure that his wife has the treatment she needs to give her the best quality of life and chance of recovery as possible.

Rosemary is believed to be aware in a semi-comatose state but unable to communicate

Rosemary is believed to be aware in a semi-comatose state but unable to communicate

The couple had made a lot of plans for their married life

The couple had made a lot of plans for their married life

This has included physiotherapy, which at one point was withdrawn, but which Philip says should be a basic human right for anyone in her condition, and which is essential to maintaining her mobility and reducing her pain, skin damage and swelling.

‘There’s a 60 percent chance that she will stay as she is but that means there’s a 40 percent chance that she will show some recovery, and she’s getting better every year,’ says Philip, 68.

‘On top of that, there’s a ten to 15 percent chance that she will have a really good recovery, and as a family member, you’ve got to go for that.’

‘No one knows what is happening inside her head’ 

Philip has done a huge amount of research into people with locked-in syndrome as well as other health issues that affect Rosemary, and does everything he can to ensure she has the care she needs.

‘Due to the battles I’ve had, I feel she has the best quality of life she can have in the circumstances,’ he says.

‘She is pain free. No one knows what is happening inside her head.’

Rosemary is able to open her eyes and look around but cannot effectively communicate, for instance by using eye tracking or blinking.

‘She opens her eyes in the morning and goes to sleep at night,’ says Philip.

‘She looks around the room and takes in what you say. When I told her that her brother had died, her eyes filled with tears immediately.

Rosemary's much loved dogs. The couple looked forward to opening a cattery together

Rosemary’s much loved dogs. The couple looked forward to opening a cattery together

‘If I hold a card up in front of her, her eyes track like she’s reading.

‘If I ask her to give me a smile, her lips start to twitch.

‘Sometimes when I’m sitting with her, she just looks so well, and I ask her to please say something to me. I tell her to keep on trying. Sometimes I think she’s about to say something.

‘We are 99 per cent sure that she’s locked in, but the only way to be 100 percent sure would be if she comes out of it.’

Philip was given renewed hope of seeing significant recovery when Rosemary was given hyperbaric oxygen treatment (HBOT) for two months back in 2016, before funding for transport was stopped.

He says that even the ambulance drivers who saw her once a week noted her improvement in this time, and he felt she was stronger and more alert.

WHAT IS LOCKED IN SYNDROME? 

Locked-in syndrome is a rare neurological disorder in which there is complete paralysis of all voluntary muscles except for the ones that control the movements of the eyes.

Locked-in syndrome affects males and females in equal numbers. It can affect individuals of all ages including children, but most often is seen in adults more at risk for brain stroke and bleeding.

Locked-in syndrome is most often caused by damage to a specific part of the brainstem known as the pons. The pons is a pathway between the cerebrum, spinal cord and cerebellum.

Individuals with locked-in syndrome are conscious and awake, but have no ability to produce movements (outside of eye movement) or to speak (aphonia). Cognitive function is usually unaffected. 

Treatment should first be aimed at the underlying cause of the disorder. For example, reversal of a basilar artery blood clot (thrombosis) with intraarterial thrombolytic therapy may be attempted up to six hours after symptoms onset. Tumors may be treated with intravenous steroids or radiation.

Often affected individuals in the beginning may need an artificial aid for breathing and will have a tracheotomy (a tube going in the airway via a small hole in the throat).

Feeding and drinking will not be possible via the mouth (it may cause respiratory infection by running into the lungs rather than stomach) and hence will need to be assured via a small tube inserted in the stomach called gastrostomy.

Recent studies and articles in the medical literature have noted that despite significant motor disability affected individuals can retain a good quality of life.

 Source: NORD

The treatment involves breathing pure oxygen at higher than atmospheric pressures in an enclosed chamber. This increased flow of oxygen stimulates and restores function to damaged cells and organs, including those of the liver and brain.

‘Like a death that you can’t properly grieve’ 

And Philip is reaching out to strangers to help raise £50,000 to allow for Rosemary to have the treatment, through crowdfunding website GoFundMe.

This would allow her to have an intensive course of six weeks of treatment for five days a week and then twice a week for the rest of her life, as well as paying for additional physiotherapy to maximise the benefits of the treatment.

Philip explains that the treatment would relieve Rosemary’s joint swelling, boost her immune system and enhance repair in her body.

‘This alone would give her the best quality of life possible. Anything above the basic is a bonus,’ he says.

But of course, he would be delighted if the treatment did result in significant improvement – he cites cases of people who have gone into the oxygen chamber the first time on a stretcher and who can now walk, but accepts that there is a lack of sufficient evidence of the treatment’s benefits for it to be funded by the NHS – at the moment.

He is hoping to be able to build a body of evidence through regular independent assessments of Rosemary’s progress, to demonstrate the treatment’s efficacy.

‘Will we get a miracle? I don’t know,’ he says.

‘But even if we only get the basic benefits, it’s worth doing. 

‘People say ‘it’s been nine years, she’d want you to move on with your life’.

‘It is a bit like a death that you can’t properly grieve, but how terrible would it be for someone who is locked in to have their loved ones abandon them?

‘I’ve seen it happen. At first there are lots of family there, then it drops to once a week, then once a month, then they only have visitors on special occasions.

‘It has taken over my life. I drive 15,000 miles a year to see Rosie. I go five nights a week. I can’t go on the other two because of work.

‘You have a lot of emotions. You have the personal emotion. She is my wife and I wonder if I’m ever going to experience what it is like to have that connection again.

‘I can still hear some of the things she used to say to me. I often drive home crying. The intimacy, the friendship, the banter – you miss that.

‘What makes me so sad is that if she had had the blood tests straight away, none of this would have happened.

‘I got married late and we only had a year of marriage before she got ill. She will always be my wife: for better for worse, for richer for poorer, in sickness and in health.’

You can read more and make a donation to Philip’s appeal at: https://www.gofundme.com/HELP-oxygen-for-HOPE 

 

 



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