Taylor-Rae's story

29th November 2009

Andy Hall knew something wasn't right with his granddaughter Taylor-Rae when he was babysitting her one weekend. But he had no idea just how ill she would get

Taylor-Rae

On Sunday, November 29, 2009 I was woken early by my son Andrew asking my wife to go and look at our granddaughter Taylor as she wasn't herself and "she looks like she's been spooked".

It was about 6.15am and Taylor was in her cot in her parents' room. By the time I got downstairs a decision had already been made to call an ambulance. It was 6.23am. It was a decision we were later told had saved Taylor's life.

Flu or something else?

She had been unwell the weekend before and swine flu had been diagnosed over the phone. The next morning she was almost back to her normal self so we assumed she had been wrongly diagnosed. She was fine all week, until the Saturday night. She had been a bit grizzly which was unusual for her, but at 17-months-old we assumed she was teething. She had been for a long walk over the common with her daddy and uncle and she was over tired. She fell asleep about 9pm, but wasn't really settled and she felt a bit hot.

Events didn't really change until just before we were woken on the Sunday morning. Taylor was trying to stand up in her cot but kept slumping back down, she was crying and moaning and looked terrified. She had never been like this before. They thought she might have had a nightmare and was scared, but when they lifted her out the cot, she cried to get back in it.

The rash appears

My son thought she smelled of urine and needed changing, but when she was undressed and changed her nappy was dry, but that's when they noticed the "bruise". It was just above her right eye and Sonia her mum, thought she must have banged her head on the cot bars. When they examined her further they noticed the rash. It was a pinprick rash all over her body. There was also another little "bruise" on her chest.

When my wife was called and saw the marks and the rash she knew instantly what it was, and that's when the ambulance was called. My wife didn't tell Andrew and Sonia what she thought it was, but told my son to tell the ambulance service that Taylor had a rash that didn't disappear when pressed.

All the while waiting for the ambulance Taylor was being held by us but she wouldn't settle and would throw her arms out for anyone who was near, but then would thrash around and want to go to someone else again. It was while my wife was holding her that her eyes rolled into the back of her head and the panic set in.

The ambulance arrives

The ambulance wasn't long at all, but it seemed to take a lifetime. They were in the house less than two minutes - they did the tumbler test, then scooped Taylor up and were gone. Andrew and Sonia had gone in the ambulance and we were left to follow behind.

We were less than 10 minutes behind the ambulance, but when we got to St George’s Hospital, Taylor was already in resus with a team of about 10 doctors with her.

As we sat outside waiting for news more doctors and nurses came running down the corridor and into the room. A nurse came out to talk to us and my wife said to her: "It's meningitis isn't it?" She replied that that's what they were treating her for, and that they were very sorry but they would do all they could for Taylor.

We were told that we could go in and see her, but only briefly and we were allowed in for about 30 seconds. It was controlled chaos, there were doctors and nurses all round her bed administering fluids and taking blood, Taylor had cannulas in her hands and they were trying to get them in her feet. She was just slumped on a pillow in the middle of this big bed just watching what was happening. By this time she was covered in the "bruises". We managed to kiss her forehead and were asked to wait outside again.

All the time we were waiting we were being urged to get hold of Sonia's mum. I was trying to get her, but her phone was off. The two ambulance ladies were still in the resus room with Taylor and they came out and asked my wife where Sonia's mum lived as they would go and get her. It was then that I realised how serious the situation was.

Very poorly

By about 7.20am we were told we could go back in the room and stand by Taylor's bed. All four of us were now standing at the head of the bed. We felt like we were in the way with all the doctors buzzing round the bed, but they were brilliant and said they would work round us. Looking back I think they honestly didn't think Taylor was going to make it and that's why we were allowed back in the room.

After about 40 minutes a decision was made to move Taylor to the Paediatric Intensive Care Unit. By this time she was completely silent. She was still conscious, but only just. She had been fighting the doctors all the way trying to pull out the cannulas they were putting in her, but now she was just lying there, helpless. A man with a big square backpack arrived with a defibrillator and we made the long walk up to PICU.

Taylor was wheeled into a room and we were told it would be about 45 minutes until we could see her again as they needed to put her on a ventilator to let her body rest and hook up the rest of the machinery that would administer the medicines she needed to keep her alive.

It was three hours before we were allowed to see her again. The only recognisable thing about Taylor was her hair. She was twice her normal size, she had machines all round her bed, wires coming from everywhere, her limbs were wrapped in foil, her eyes were now shut. It was shocking to the core to see her like this and completely heartbreaking.

Intensive care

We were told they were taking it minute by minute, and indeed this was the case until day five when she was finally described as "stable".

In those first five days Taylor’s little heart gave up twice. On day one her blood pressure was the cause of her heart failing. However, the second time on day two was much more serious. Her lungs couldn't cope any longer and gave up. They managed to revive her and she was then put on a ventilator the doctors described as "the daddy of all ventilators". The nurses referred to it as the "washing machine", as it was the size of a washing machine and as noisy as one. It held Taylor's lungs open and shook air into them to save her little body the stress of opening and closing them. We called it the bone shaker. We could no longer reach Taylor's head to even kiss her now; she was surrounded by so many machines.

They struggled to control Taylor's temperature. One minute she'd be on the cold blanket, next minute her temperature would drop drastically and they'd put her back on the warm blanket. Her kidneys would stop producing urine, so they would give her medicine to make them work, then they would over produce it, so they would give her more medicine to counteract it. We were also told in those first few days that she could lose her limbs, or her digits. It is a miracle and a testament to the care Taylor received that she didn't lose any of her limbs or fingers.

More bad news

However, more bad news was to follow on day two - Taylor had swine flu. How much more was this little baby expected to fight? It was during the height of the epidemic and babies were dying from swine flu - but Taylor had meningococcal septicaemia as well. Now only her parents and grandparents were allowed in her room and we had to wear protective aprons and masks. Even if we'd have managed to find a piece of Taylor's skin to kiss, the masks would have made it impossible to do so.

Over the next few days Taylor continued to fight, and around day eight we were told that she might make it home for Christmas. We had never even been told yet that she was going to survive, so have the doctor say she could be home for Christmas was amazing. Her skin was now turning black where the rash had been and was blistering. Her lips were hard and black, and the plastic surgeons said there was tissue damage to her lips and they didn't know whether they could save them.

On day 11 she was taken off the ventilator and brought round. It was such a relief to see her beautiful big brown eyes again, but now she was conscious she was in enormous pain from the blisters that covered her little body. Her morphine was upped, but she still struggled with the pain, it was heart wrenching to see her like that. She continued to make progress and was moved up to the children's ward where she spent the next four weeks.

Andrew and Sonia moved into Ronald McDonald house and took it in turns to spend the nights with Taylor. Andrew would do two nights and Sonia one as she was 26 weeks pregnant at the time. The baby was almost forgotten about as we all focused on Taylor getting better.

Pulling through

Taylor began eating again around week three, and was by now trying to speak. She was unable to use her left arm, and the fingers were curled up so she couldn't hold anything in her left hand. She would grab hold of it with her right hand and force it to work. We were told Taylor would have physio as an out patient to get her to use her arm again.

Thankfully Taylor made great progress and was only being treated on the ward for the blisters, which by now had scabbed over. The scabs were like thick black leather and hard. The plastic surgeons regularly popped in to see how things were going.

Taylor didn't make it home for Christmas. Or for the New Year. She finally came home on January 6. She had been in hospital for almost six weeks. She hadn't been dressed in almost six weeks and she hadn't walked in almost six weeks. The doctors said it would take Taylor a few weeks to get back on her feet, but two days after coming home she was walking again. On January 9, Taylor got her Christmas Day. She wore her Mrs Christmas outfit we had bought her and she walked proudly into the party, all big smiles!

She has continued to make great progress and apart from the scars that the rash has left you wouldn't know how seriously ill she had been. She managed to get her arm moving again and eventually her fingers by herself. By the time her physio appointment came through the doctors were quite happy with her and she was discharged from them.

She is a very bright little girl and now speaks in sentences of four words, so she has certainly not suffered any long-term impairment. Her little brother Ollie was delivered safe and sound 13 days late, so thankfully he didn't suffer either in any way from the stress his mum had been through. It was the most wonderful feeling watching Taylor meeting her baby brother for the first time. A very blessed moment.

Taylor will soon be celebrating her second birthday and we thank our lucky stars every day that she is still with us and it still amazes us that she managed to beat this awful disease. We could never thank the doctors and nurses enough for saving Taylor's life. How could you thank them? The only way we could express our thanks is by helping to raise money for Meningitis Now and by raising awareness of this dreadful disease and money towards vaccine research.

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