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Surviving meningococcal septicaemia

When her husband reported hearing their six-week-old baby daughter making a strange, high-pitched cry, Alison felt straight away that something must be wrong.

Jasmine with her parents
Jasmine, 3, with her parents, Alison and Martin
"We'd been out shopping, my son wanted to spend his Christmas money, and Jasmine had been in her car seat for longer than usual. She was probably feeling fed up - she didn’t like her car seat," says Alison.

"But when we got back, my husband described the unusual noise Jasmine had made. Instinctively I knew that it didn't sound right."

With three older children already, Alison and her husband had plenty of experience of babies and children. They had nursed their youngsters through all the usual childhood conditions from coughs and colds to chicken pox.

Jasmine seemed otherwise fine, having had a normal delivery and passing her post-natal checks with flying colours, and she still seemed bright, alert and keen to feed. But Alison had a hunch that she was just not her usual self, and decided to stay up with her through the night.

Going to hospital

"At midnight she was a bit fidgety so I cuddled her on my chest," says Alison. "At 5am I noticed that she sounded a bit snuffily but I thought she might be catching the cold we had all had. Then at 7am I changed her nappy and noticed a tiny spot no bigger than a pinhead just above her nappy line. At six weeks, a baby's skin is so perfect - there aren't any bruises or blemishes, so I spotted it straight away. I pressed my thumb on the spot, and it didn't disappear.

"Then I saw a tiny mark on her neck, and one on her arm. Even though she didn't have a rash, I immediately thought of meningitis.

"I told my husband that we had to get to hospital immediately and started throwing things in a bag. He knew I was serious – he‘d never heard that tone in my voice before in all our years of being married."

With an aunt on her way to look after their three older children, Alison and her husband headed for their nearest hospital in Romford. By the time they arrived, Jasmine's lips were turning blue and her breathing had become laboured. The medical team whisked her straight into resuscitation. The couple followed anxiously.

"After what seemed a really long time, the consultant turned and told us he thought Jasmine had meningitis," recalls Alison.   

"We watched while they ventilated her. It was a shock to see the large purple blotches that had developed all over her body - a classic sign, I now know, of meningococcal septicaemia. I broke down at that point. I said to my husband that she didn't look like Jasmine anymore."

Specialist referral

Jasmine in ITU
Jasmine was admitted straight to PICU at GOSH

The consultant explained that Jasmine needed to be transferred for specialist intensive care, and that he was thinking of Great Ormond Street Hospital. The couple agreed, and the GOSH retrieval team (known as the CATS team) arrived to collect her. After working for a couple of hours to stabilise her condition, the team transferred Jasmine by emergency ambulance to the Paediatric Intensive Care Unit (PICU) at GOSH.

"We were shown into a waiting room while Jasmine was whizzed off," says Alison. "I don't expect we were in there for long but it seemed like forever. Then a doctor and nurse called us, and sat us down. They explained that Jasmine's condition was so serious, we should prepare ourselves for the worst. At this point my husband was confident Jasmine would survive, saying 'She'll be OK, she's not going anywhere'.

"We were taken to see Jasmine in an isolation room. She looked so tiny, surrounded by lines and machines. There was so much equipment around her we could hardly get close enough to touch her. She had a one-to-one nurse looking after her who was fantastic, explaining everything, but it was hard to take it all in.

"We knew they were working hard to stabilise Jasmine's condition. Her kidneys were failing and she needed dialysis, but they could only give her this lifesaving treatment if her condition was stable enough. I found out later she had gone into what was called multi-organ failure."

The couple's family came and went. Just before midnight, PICU staff advised Alison to get some rest. But it was New Year's Eve and they wanted to see in 2009 with Jasmine. Just after midnight, they reluctantly left the ward for their overnight accommodation provided by GOSH.

"Walking across the square outside the hospital was surreal," says Alison. "We could hear lots of people out celebrating the New Year, while all we could think about was would Jasmine pull through?"

With their mobile phones ready for a call at any time, the couple rested but couldn't sleep.

"I was willing Jasmine on hour by hour," says Alison. "And each hour that went by, I began to feel more hopeful. Then at 5am our phone rang. I grabbed it - it was a PICU doctor to say that Jasmine was stable enough for dialysis."

Starting treatment

Over the next days, the couple watched their daughter's condition change and very gradually improve. The rash on her legs turned to blisters, and fluid that had built up in her body making her look swollen slowly drained away.  At one point some of her fingers were such a dark purple, Alison was convinced she'd lose them. But they slowly turned pink again.
   
After six days in intensive care, Jasmine was transferred to Robin Ward at GOSH, which specialises in treating children with infectious diseases.
 
"She gradually came off her medication and even though she had been lucky enough not to lose any of her limbs, the doctors warned us that Jasmine might have suffered underlying neurological damage," says Alison.

"We explained this carefully to our other children. We told them their little sister could have learning problems, or a physical disability.

"My son simply said that he didn't care. He just wanted his sister back. I thought if they can deal with this, then I can deal with it as well."

But remarkably, it turned out that Jasmine was relatively unscathed.

"There was a day on Robin Ward when she looked at my husband, seemed to recognise him and gave him a huge smile," says Alison. "I knew then that there was nothing much wrong with her!"

Jasmine painting
Jasmine is now ahead of her age

Ahead of her age

By the middle of January, the family was back home. Now, two and a half years on from their experience, Jasmine is thriving. Hearing problems are a common after-effect of meningitis, but Jasmine has passed all her hearing tests. And, at her two-and-a-half year check, the health visitor told Alison that her little daughter was ahead of her age in terms of her development.

Dr Delane Shingadia, Infectious Diseases Consultant at GOSH, has been following Jasmine's progress carefully at regular outpatients appointments.  

"Although the peak incidence of meningococcal disease is in infants under one year of age, Jasmine is unusual in that she was very young, being only six weeks old at the time she presented," says Dr Shingadia.

"At that age it can be very difficult to pick up the typical signs and symptoms of meningococcal disease and it was thanks to Alison's astute observation and quick action that Jasmine got appropriate medical care.

"At GOSH we see many children, like Jasmine, with severe infections, including meningococcal disease, that often need specialist care by the many different teams we have at the hospital."

Jasmine does have some residual problems. A problem with her hips means that she will need surgery at GOSH in the near future. But it doesn't stop her running about and climbing over the sofa. The illness also affected her teeth - they have emerged without a protective covering of enamel. But the dentist has assured the family they can be replaced when she gets older. There may also be links to behavourial problems.

Jasmine with mum, Alison, and Dr Shingadia
Jasmine continues to see Dr Shingadia regularly

Ongoing support

Alison says: "Dr Shingadia's continued support of Jasmine's care, and listening to our worries, means he has found her hip problems early enough for them to be sorted whilst she's still young.

"He always listens and acts on what we have said making her appointments less stressful.  We are so glad he is one of her consultants.

"And while Jasmine does have some lingering problems, they are really a very small price to pay for having her - she has survived against all the odds," says Alison.

"I still can't believe how it is that she has survived, while others don't. The nursing staff and doctors all deserve medals for their dedication. But is she alive today because we got her to hospital quickly? That they gave her medication at the right time? Or because she's a fighter? All I know is that we have been so lucky."
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