Meningitis in your words

George Keen's story

Location: England
Categories: Escherichia coli (E. Coli)
Age: Baby 0-1
Relationship: Parent
Outcome: Recovery with after effects
After effects: Other

George was born on the 25th November 2010 after a very quick labour with no complications. When he arrived he showed signs of respiratory distress and a paediatrician was called.. On his initial consultation he decided he would like George to be taken to SCBU to be checked over. On a second opinion it was decided that they thought he was OK and I was taken down to the ward with him.

During the evening/night of his birth he was very unsettled and uninterested in his feed, and my midwife became concerned at his low temperature of just 35 degrees. By the early hours of the next morning he was experiencing respiratory distress again which they referred to as 'grunting'. They put him into a temperature cot next to my bed to try and warm him up to no avail and at about 5am he was taken to SCBU.

On arrival at SCBU our baby boy took a turn for the worse and started fitting and had trouble maintaining his blood pressure and heart rate. He was started on antibiotics as a precautionary measure while doctors started tests to find out what was wrong.

At 9am a consultant and the nurse who had taken care of George through the night came to my bedside on the ward to deliver the news no parent wants to hear... George had meningitis. They did not know what strain of the disease he had, this would take another day to be confirmed. I contacted my partner and my mum who came to the hospital straight away. Meanwhile George had the fight of his life on his hands at not even 24 hours old. He was on CPAP to help his breathing, medicine to maintain his blood pressure and medicine to stop him from fitting, among many other things. At this point no one could tell us if he would live or die.

The next few days were the hardest of our lives, not to mention having to leave the hospital after three days without my beautiful baby boy and William’s new little brother. But George was a little fighter and was hanging on in there.

"It was a shock this had happened once – how was it happening twice?"

After a week George was making better progress than any of us could ever imagined, including the doctors. He became a little jaundiced but this didn't need treating and he continued to do very well. He was kept in SCBU for a total of 22 days on a 21 day course of IV antibiotics and on 17th December we finally took our little fighter home.

Just in time for Christmas, it was the best present ever for us all – especially William – who had wanted a brother so long!!!

To look at our brave little man you would never have known he'd been so very poorly. That New Year’s Eve, whilst watching Big Ben on the telly, we said goodbye to what had been a terrifying year whilst looking at our beautiful boys thinking how lucky we were to have them.

Just 36 hours later, on the morning of 2nd January 2011, I was giving George his morning feed when he became very unsettled and unwell with sickness and diahorrea. He was crying uncontrollably and was inconsolable.

We took him to our local hospital where we were quickly referred to William Harvey Hospital in Ashford due to his history. On arrival to WHH were taken to a side room where George had his temperature taken, his blood pressure checked and his oxygen levels tested. We were told all of these things were fine. By this point George had worn himself out, was refusing his feeds, went into a deep sleep and was very pale.

We were then discharged by the doctor who put it down to a feeding issue. Unconvinced, I tried to discuss his previous meningitis with the doctor, only to be told not to be a paranoid mother just because he had had it once at birth

During the night George was still very unsettled and remained very pale. His cry became a pathetic whimper and he was still refusing his feeds. We were extremely concerned but also now felt we may be perceived as 'paranoid' parents. I sat up with George all through the night and at 9am put him in the car to go to my mum’s to pick up William. During the car ride there George was still whimpering and appeared to be flinching at brightness and any noise. When I got to my mum’s I carried George in and handed him to my mum and cried. “Mum he’s not well”, I said, “and the hospital won't listen but I'm his mum and I know he’s not well.”

Mum told me to ring the hospital back right away, when I was told by a nurse to give him Calpol and to ring back in an hour if no improvement. George was so distressed he wouldn't even open his mouth.

Not happy, mum told me to ring the hospital again and this time I spoke to a consultant, Dr Colin Green. He was immediately concerned given George’s history and told us to bring him straight in.

On arrival at hospital George was given a lumbar puncture – our worst fears were confirmed, George had meningitis again.....

We were in total disbelief... it was a shock this had happened once – how was it happening twice?

George was started on IV antibiotics and was hooked up to life support once again.

During the night George had two confirmed seizures and was unable to maintain his body temperature, dropping down to just 33 degrees.

"I'll never forget hearing William sobbing as we were rushed off. My poor big brave boy."

Shortly after this George lost consciousness and was sent for an MRI. Dr Green took my hand and gave me the news that George had areas of brain damage and due to his altered state of consciousness (coma) he would need to be transferred to London by blue light ambulance.

In a mad panic I had to phone my mum and partner. Mum came with me in the ambulance and Jarno was to follow in the car – I'll never forget hearing William sobbing as we were rushed off. My poor big brave boy.

When we arrived at London George was a very poorly boy and was being very closely monitored. They kept a bed open for him on PICU for two nights as they thought he would need ventilating, but our little fighter continued to breathe for himself against the odds.

It was about three days before George regained consciousness. We were over the moon but this time George hadn't been so lucky and it became apparent straight away there were some issues with his left side, he could not open his left eye or move his left side and he didn't appear to be able to hear either.

We stayed in London for a month where he went through a series of tests to try and find out why this meningitis happened once, let alone twice...

We still to this day have no answer to why or how this happened to George but we do believe had he been treated quicker on the second episode he may have again made a full recovery as he did at birth. We do however feel extremely lucky that he is still with us after all he has been through. He is our little fighter :) and we all love him very much.

Michelle Hayman
May 2011