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Matilda H’s story

8th March 2016

One month before her first birthday Matilda had a high temperature, was off her food and seemed out of character

Matilda H’s story

She wasn't her cheerful happy self, quiet and unsettled.

Mum Jill, from Oxford, consulted a GP neighbour and Matilda was rushed straight to hospital - she had contracted pneumococcal meningitis. Jill tells their story.

“The day before Matilda became ill, I was at a friend’s wedding. I had a conversation with my husband around 3 o'clock to say Matilda seemed a little unwell, but she was teething and it was a hot day and it was the first time I had left her for a whole day, so we put it down to those factors.

The next morning, I arrived home at 10 and took one look at Matilda and knew instantly that she was desperately ill. She seemed to be crumbling away. She was greying in pallor, her breath seemed heavy and slightly short, she was terribly thirsty and she seemed unresponsive.

I immediately went to my neighbour, who is a GP, and he felt the same, that Matilda was desperately unwell.

He called an ambulance, a paramedic car arrived one minute and an ambulance the next. It seemed unreal, like a dream. They checked her stats and we went straight to A&E.

The doctors immediately treated it as suspected meningitis and Matilda was hooked up to IV antibiotics. We were asked to leave the building while they did a lumbar puncture because they didn't have time to numb the area and she would scream - goodness."

Deteriorated quickly

“And then we watched and monitored all afternoon. Matilda’s condition deteriorated quickly. She started to have small seizures in her finger tips and toes which I noticed and called the nurses to watch. Her eyes also seemed to be gently flickering back and forth. Concerned, the doctors sedated her to try to stop the seizures.

The second and third attempts to stop this with sedatives did not help. The third lot of sedatives caused Matilda to stop breathing. The doctors were prepared for this and started to breathe for our baby. They weren't sure she would make it at this point and we were taken to a relatives’ room to wait. This was 4pm. By 7:30 they had stabilised her and she was being looked after in intensive care.

Our baby was swollen and covered in tubes and monitors bleeped out everything that was happening in her tiny body.

We were told to expect the worst. She was gravely ill. She was intubated and placed in an induced coma. A machine was breathing for her."

Nothing can prepare you for this

“We crumbled. It was the most traumatic thing I have ever experienced. Nothing can prepare you for a situation like this. Nothing can hurt and crush you more than seeing your own child defenseless and dying.

The next day she remained stable. On Tuesday night they were concerned the sepsis they had managed to contain in her brain was spreading and they gave her a full blood transfusion. This stopped it from spreading. Thankfully Matilda never developed the rash often associated with meningitis. She had a brain full of septicaemia, however, and so lots of tests continued to be carried out on her brain activity.

On day three Matilda’s ice bags were taken off her to see if the fever had subsided and if so, could she maintain her own temperature. She managed to do this. They also started to try to wake Matilda up, take her out of her coma. They were unsuccessful with this; she still seemed very drowsy and unresponsive.

She was on a lot of morphine however, and character wise, as our third child and only girl, Matilda, although only 11-months-old, knew her own mind and would only do things in her own time!"

‘Come on my darling’

“I tried to explain this to the Senior Consultants and of course they were slightly bemused. I had faith though. ‘Come on my darling’, I urged her every second, ‘come on and wake up when you're ready. I'm here waiting for you my darling girl.

Other news on the third day was that the scientists who had been working hard in the hospital labs to create an antibiotic to target Matilda’s infection specifically had a breakthrough and by day four the meningitis started to release its hold.

By day five the anti-seizure medicine was slowly reduced and Matilda showed no sign of fitting. She had started to show signs of more alert behaviour, getting cross when they cleaned her teeth and reacting to touch on her feet and hands.

They were keen to get her breathing by herself and so removed her breathing tube on day six and I got to hold my baby for the first time in almost a week. She felt so heavy because she couldn't support herself at all. But it was a welcome weight in my arms. Her little face showed such distress and anguish and I cried at the outward suffering she was experiencing. It was heartbreaking."

Waiting for a dreaded phone call

“The following morning she had coped marvelously well through the night without her breathing tube. The doctors shared with us their concern that if they removed the tube too soon and then had to sedate her and replace it, it would really set her back.  I don't think I slept at all that night waiting for a dreaded phone call.

But, when we arrived in intensive care that morning, we found our baby girl propped up in bed with a little nasal oxygen, watching Peppa Pig on a hand held DVD.

She was still very poorly, but the hope we felt that she was making her first steps to recovery felt enormously positive.

From then on Matilda got better each day. We spent another four days in Paediatric High Dependency and then a further four days on Robin’s Ward in the Children's Hospital at the John Radcliffe in Oxford."

Home in time for her birthday

“Matilda came home two weeks before her first birthday. She had lost the use of her left side. With physiotherapy this came back within two months.

Although I had major concerns about her hearing after coming home in August, audiology overlooked Matilda’s profound hearing loss for six months. An ABR demonstrated the loss in February 2015. Shortly after this diagnosis Matilda started walking!

She was fitted with cochlear implants in May 2015 and had started to hear things by August 2015. She is doing very well generally, and is a very happy, delightful two-and-a-half-year-old character. We are supporting her with her hearing loss and work hard to keep her as active and involved in family life as possible.

Matilda had been vaccinated against pneumococcal meningitis, but the type she had was one that the vaccine didn't cover. We had numerous tests in immunology after we were discharged to check that she did not have something wrong with her immune system. She is completely well, and we can only conclude that, unfortunately, she was just one of the rare unlucky 200 that contract a type of pneumococcal meningitis that isn't immunised against yet.

We feel we are so very lucky to have had this outcome after Matilda’s devastating illness. Time will tell if there are any other lasting effects, but we are reminded every day how lucky we are because Matilda is still here with us.

Our story also shows the importance of meningitis research. Without the amazing lab professors in the Oxford John Radcliffe Hospital, who worked on an antibiotic to fight the strain Matilda had, she would not have survived.”