TODDLER Eleanor Coneybeare will spend Christmas with her family less than two years after meningitis nearly killed her.
The two-year-old has fought back after being critically ill in hospital just 20 months ago and losing her right leg to the disease.
She recently learned to walk on her own with a prosthetic leg but her parents, Alison and Duncan Coneybeare, from Caversham, are simply grateful that she is alive. The couple also have two sons, Ben, 10, and Nathan, five.
Mrs Coneybeare, an accountant, said: “We think we are very lucky that Eleanor is here and she is happy, beautiful and alive.
“She can participate in anything, is developing around the stump and is not frightened of getting involved in wrestling with the boys.
“You really would not know she had any problems. The trips to the hospital will get less as she gets older and she does not know any different.
“This has changed all of us and we are much more aware of these things than we otherwise would have been, although it is not the way I would have liked to become aware of them.”
Eleanor was eight months old when she became ill in April last year. She had a cold and high temperature and her mother became more concerned when she began vomiting during the night.
Mrs Coneybeare, 43, recalled: “Our normal doctor was on holiday and the one we saw diagnosed a viral throat infection. I thought the vomiting was a bit odd but I was told it was fine.
“It was the Easter holidays and as we were having work done at our house, I was taking the children to my parents’ house in Knutsford, Cheshire, for a few days and, based on what the doctor had said, I decided to go ahead.” After travelling north, Eleanor was still unwell but still feeding so her mother was not especially concerned. However, on the second evening of their stay, the baby girl took a turn for the worse.
Mrs Coneybeare said: “I had just spoken to my husband on the phone to say Eleanor was not too bad when my mum came in. She had been giving Eleanor her milk feed and she said that she thought something was wrong.
“Eleanor was floppy and her breathing had really started to change. She was staring into the distance. I still was not thinking it was anything really serious, maybe a chest infection which would explain why her breathing was raspy and that she might need a bit of oxygen.”
Mrs Coneybeare called a doctor who listened to Eleanor’s breathing over the phone and advised calling an ambulance straight away.
“It scared me when he said that,” she said. “There was a first responder with us within two minutes. He was just taking a look at her when the paramedic and the ambulance arrived. They said that she had to go to hospital then. They did not say any more.”
Mrs Coneybeare was in the paramedic’s car that followed the ambulance to Macclesfield General Hospital where her daughter was taken into accident and emergency — but not before an unexplained stop of about a minute on the way.
“I thought, ‘oh my God, what’s going on?’ ” she said. “I feared the worst.”
At the hospital, she was told that her daughter was very ill.
Mrs Coneybeare recalled: “The nurse said they were trying to stabilise her but she was having problems with her blood pressure. It was really frightening.
“When I did go into the room there were so many people in there. There were tubes everywhere and someone was massaging Eleanor’s heart to keep it going.
“Part of her hair had been shaved to attach monitors. I was told that her body had been taken over by a massive bacterial infection.
“I could not stay with her like that. I was completely helpless and being sick myself, which I think was caused by the shock.”
Meanwhile, her 43-year-old husband, a business analyst, had been contacted and told to make his way to the hospital. Because his wife had the car and there were no trains running that late, he took a taxi all the way.
Mrs Coneybeare said: “I asked the doctor if Eleanor was going to die and she told me that she was very poorly. I was texting Duncan and I said, ‘We might lose her’ and he said, ‘I know’.”
The medics worked for three hours to stabilise Eleanor so that she could be moved to Alder Hey Children’s Hospital in Liverpool, a 45-minute drive away.
Mrs Coneybeare said: “I have no doubt that without the staff at Macclesfield she would not have survived but they just couldn’t cope.
“Duncan got there just as they were preparing to transfer Eleanor.
“As they were about to move her, these little black marks started to appear on her face. It was the tell-tale rash for meningitis and we were told she had meningococcal septicaemia.”
The couple didn’t see their daughter at Alder Hey for another two hours by which time she was covered in purple-black blotches.
Mrs Coneybeare said: “The rash can be quite a late symptom and if we had waited for it to develop it would have been too late — she would not have survived.
“When we were allowed in to see Eleanor she was on a ventilator and attached to even more lines than before.
“She had four different drugs going into her just to control her blood pressure and she had swollen up everywhere.
“You think of intensive care as a quiet place but it is very noisy with all the machines and ventilators. It is really scary when you are in there.” The staff told the couple that the first 48 hours were critical to Eleanor’s chances of survival.
Mrs Coneybeare said: “You could tell they were preparing us for the worst. They kept saying that meningitis is a very difficult disease and that they were supporting all her organs.”
The couple were told that their daughter had no sign of a pulse below either elbow or knee, meaning she was likely to lose all her limbs if she survived.
They had to decide whether to allow the use of a drug which stops blood clots but is normally used on adults.
Mrs Coneybeare said: “We were told that it was not part of the protocol for the treatment but they had used it on children in the past.
“The downside was she could have a massive haemorrhage and we could lose her. We said no, we would rather she was here and we would deal with whatever that meant.
“Both our boys came in and saw Eleanor then just in case that was the last time.”
Mrs Coneybeare’s parents, Joan and Steve Cole, then moved into the family home in Caversham with the boys so they could continue attending Hemdean House School.
Mrs Coneybeare said: “We had no idea how long we were going to be at the hospital. The doctors said it was going to be a long haul so it was important for the boys to maintain some sort of normality.”
Eleanor spent a week in intensive care and a further six weeks in hospital. Halfway through the first week, she had her leg amputated through the knee and also lost part of each finger on her left hand.
Her mother said: “We sort of knew it would happen and when you saw her leg it was obvious that it was badly affected as it was purple below the knee.
“We had prepared for her losing all four limbs and in the end, her having one leg amputated was a little bit of a relief at that point.”
Eleanor had a prosthetic leg fitted when she was a year old and underwent intensive physiotherapy to help her movement.
Mrs Coneybeare said: “She coped fine. She was still not mobile but her leg had started to heal. The problem is that the leg is quite heavy so you build it up little by little but she was very good with it from the start.
“We try to keep it on as much as possible to get her used to it. She has been walking but holding on to things for a while but she let go and started walking on her own in October.
“That felt great and she can now get up off the floor on her own, which is a big thing as it is quite difficult to get from a sitting position to standing.”
Eleanor will have surgery in the New Year to further increase her mobility.
She has also suffered profound hearing loss in one ear, which the family discovered in January.
But Mrs Coneybeare said: “Her language seems to be coming on quite well now and the other children at Chiltern College Nursery have been brilliant with her, as have the staff.
“Eleanor has not been easy for them but they have been very supportive in making sure she gets the things she needs to takes part as much as possible.
“Hemdean House were also very good while we were away, keeping an eye on the boys to make sure they were supported.”
The family have been involved in a number of fund-raising activities for both Alder Hey Hospital and Meningitis UK.
Mrs Coneybeare says she will have a story ready for Eleanor when she starts to ask questions.
“We have been told that children start to get a little bit more of an idea of self at the age of three,” she said.
“She will know that she is different and we will then give her a basic idea of what happened and fill in more details when she is older and has more understanding.
“It needs to just be ‘this is what happened’ and she will have counselling when she wants or needs it.”
To make a donation or for more information, visit www.meningitisuk.org