Meningitis – Be aware

Monday, October 12th, 2009

Meningitis charities are warning parents to be aware of the symptoms this winter. Nerys Davies tells Health Editor Madeleine Brindley how the deadly disease almost claimed the life of her youngest daughter Amber

JULY 1, 2005 is etched on Nerys Davies’ memory – it is the day her youngest daughter almost died after she contracted meningitis.

Meningococcal septicaemia transformed a healthy eight-month-old into a desperately sick baby fighting for her life with frightening speed before her worried parents’ very eyes.

But Amber did survive, although her amputated leg, toes and fingers are a permanent reminder of the damage the infection caused and how close she came to death.

“I could never, ever forget that day,” said Nerys, who has two other daughters Nicole, eight, and six-year-old Abby. “It’s like a sad anniversary and I dread it when it comes around. I know she’s alive and with me but that date brings it all back.

“The girls were going on a trip to Folly Farm that morning so I’d set my alarm clock an hour earlier because I wanted to prepare their sandwiches.

“I thank God that I did that because if I hadn’t Amber wouldn’t be here now.”

Nerys, now 25, said Amber was lying in her cot awake but staring at the ceiling. She was pale – her lips were turning blue – and she was struggling to breathe, but there was no rash.

“The night before my husband Leigh had called me at work to say that Amber’s cheeks were red and that she was a little grisly. She was eight months old, she was teething, I told him to give her some Calpol. When I got home she was a happy, gurgling baby.

“But in the morning she could hardly breathe and when I called to her she couldn’t look at me. When I picked her up she was floppy and her hands and feet were freezing.

“I thought she had a chest infection because of her breathing. The doctor’s was just two minutes away so we thought we’d take her. I went to lift her up and I saw a tiny bruise on her left arm.

“It was the size of a baby’s nail and I just screamed – as soon as I saw it I just knew that she had meningitis. It was tiny and wasn’t even a rash.

“I ran into the middle of the road, I was knocking on our neighbours’ doors, screaming for help and screaming that my baby was dying.”

Paramedics arrived within minutes at the family’s home in Capel Hendre, near Ammanford, but instead of being able to reassure Nerys and Leigh that their youngest daughter was going to be all right, they could only tell them that they would do what they could.

“Within the time it took us to get to hospital I watched my own child change – she was coming out in a purple rash and huge blisters,” Nerys said.

“Her lips were swollen, her little fingers and toes were turning blue in front of my eyes.”

Amber had drifted into a coma by the time she reached hospital in Carmarthen. Because of the seriousness of her condition a team of doctors were called in from the University Hospital of Wales in Cardiff.

“A consultant from the Heath came in and told us that they were very sorry but our daughter had the worst strain of meningitis and that there was very little hope that she was going to live,” said Nerys, who works part time with autistic adults.

“They said that no matter how much medicine they gave her, her little body was too weak, that she was too ill to fight it off. We were told that we had two choices – we could stay at the hospital and say our goodbyes because they didn’t think she had more than 24 hours left or they could do a grab and run.

“They said that they’d take Amber in an ambulance, without us, to ICU in the Heath but if she was to die…

“I screamed to my mum to please save my baby but my husband told them to take her. I said no – they’d said she was going to die and I wanted her in my arms.

“When we finally got to the Heath three doctors came to see us – one had tears rolling down her face – and I started to blame my husband for letting her go.

“They told us it was touch and go but that she had made it and that she was on life support. They warned us that we wouldn’t recognise her but I thought that it couldn’t have got any worse from earlier.

“I saw a big bed with a tiny body in it and a mop of ginger hair. If it hadn’t been for that hair I wouldn’t have recognised her. She had trebled in size – my eight-month-old was so swollen she was the size of a two-year-old. There were drips everywhere – in her ribs, thighs, legs.

“I asked what her chances were and was told that they had done all they could. I asked if there was any hope and was told no.

“I thought that she had made the journey here and now they were telling me that she was going to die.

“Her heart rate was dropping by the minute and I was asked whether I wanted to phone my mum or dad – my mum is my best friend but I said I wanted a vicar.

“The vicar came and we sat around her bed. On the second day all the alarms went off and everyone rushed around her – she had a cardiac arrest.

“It was the most horrific thing that I’ve ever had to go through. I was telling them that I’d pay them to do anything they could to save my baby and then a nurse told me she was sorry and I collapsed.

“They managed to bring Amber back but her heart had stopped for a while and her brain was starved of oxygen. They warned us that if she had another cardiac arrest she wouldn’t make it.

“We were warned then that if she did survive that all her limbs would have to be amputated, she would be brain damaged, that she would be deaf and that she could lose her sight and never be able to see us again.

“I didn’t care, I just wanted them to save my baby.”

Amber underwent life-threatening surgery while she was in intensive care in a bid to relieve the pressure on her swollen body.

But after 11 days in a coma, the alarms surrounding her small body started to ring again.

“I thought that was it,” Nerys said. “The next thing Amber had opened her eyes, she turned her head towards me and gave a weak, weak little smile.”

When Amber’s condition had stabilised she was transferred to Morriston Hospital in Swansea for amputation. But the surgery was delayed for two weeks after she contracted a stomach bug. By the time she was strong enough for the operation her right leg was gangrenous and she faced the prospect of losing both her legs and arms.

Amber was in surgery for nine hours but the surgeons managed to save one of her legs and both her arms – she lost her right leg below the knee, the toes on her left foot and her fingers on her left hand.

“She was still the child I gave birth to – she was still my special baby,” Nerys said.

“When we left the Heath they said that Amber was the sickest child they had had in the hospital with meningitis who had survived.

“They said they were sorry for telling us that she was going to die but they would never have told us that unless they were absolutely certain.”

Amber spent a further four months in hospital and today has regular appointments to monitor her hearing – she is hyper-sensitive to loud noises but her hearing is otherwise unaffected, as is her sight.

Staff at the artificial limb and appliance service in Swansea have become members of Amber’s extended family, as has her physiotherapist, thanks to the frequency with which she visits them.

Nerys added: “Amber has a slight limp but when people look at her they would never realise what she’s been through.

“I still have nightmares about it and find it hard to sleep – I have a monitor in Amber’s room.

“Five months ago I had a brain tumour removed – it wasn’t cancerous but as it was growing behind the pituitary gland, I was very ill and I thought about giving up. But the thing that kept going through my head was how Amber went through so much that I could get through it too.

“I was a young parent at the time and thought that meningitis was just a rash – if you see a rash, it’s meningitis. But the rash is the last thing to come out.

“I didn’t think meningitis was around here – you see it on television but not around here. Amber was healthy, she was up to date with her jabs and had never been ill and within a matter of moments it happened in front of my eyes.”