Bea's story

6th July 2019

Louisa’s young daughter Bea had a high temperature, sickness, a painful neck and was lethargic. Doctors initially thought she had a viral infection but it was something more serious – pneumococcal meningitis

Bea pneumococcal meningitis case study

Fortunately the 2-year-old responded well to treatment and went on to make a good physical recovery, but it was a rollercoaster ride. Louisa, from Chepstow in Monmouthshire, tells their story here.

“It all started on a Thursday afternoon. Bea was crouching on the floor in what I assumed was pain from constipation. She then peaked a temperature of 39.5 and after having some Calpol fell asleep."

“She was whimpering in her sleep and despite the Calpol still had a high temperature. Something didn't feel right so I booked her in to see the local GP later that afternoon. Once we arrived at the GP surgery, she did what most children do - perked up and was running around like nothing was wrong. The GP examined her and said that she had a sore throat and that it was most likely viral but to keep an eye on her."

“So, we went home and I felt a little less worried. The next day, she went off to the childminder and was seemingly fine, a little off her food and quiet but nothing too concerning."

“At about 11pm she woke up crying and being sick. I remember picking her up and thinking just how hot she was - like a hot water bottle. Her little heart was beating really hard and fast."

Something felt really wrong

“I stayed up with her throughout the night where she continued to be sick. She couldn’t keep fluids or Calpol down. The next morning was Saturday and she was still being sick. She would just lie on the floor whilst I cleaned up around her. Something felt really wrong, so I booked in to see the out of hours GP. Once there she was monitored for a few hours. I remember her being really sleepy, floppy and unresponsive."

“Because she was not making any improvement she was admitted to the Children’s Assessment Unit in the Royal Gwent. The nurses thought she likely had a water infection but the test came back clear, so they took some bloods. I remember that at some point that afternoon, she started to get upset when we sat her up and wanted to be left on the bed. This was very unlike her as she is really cuddly and doesn’t like to be put down."

“The consultant came to see us and advised that he was unsure what was wrong but he said that he could see how worried my mother and I were. I remember him saying, "If Mum is worried then I am worried; if Grandma is worried then I'm very worried"."

Next 24 hours key

“I had decided that I was going to stay put, even if they tried to send us home. We are so lucky they didn't. A few hours later whilst trying to give her more liquid I noticed that her pupil had dilated and her eye was ‘lazy’. I called the doctor in to have a look. The next thing I remember is the room full of doctors and nurses and everyone fussing about her, pushing her head down and then I heard that dreaded word ‘meningitis’. They were treating her for meningitis and the next 24 hours were key."

“Everything happened really quickly then. Bea was put straight onto antibiotics, antivirals and steroids and was taken downstairs for a CT scan. She was moved into the High Dependency Unit and monitored closely. When the CT scan results came back they said that there were changes on the brain that was consistent with viral meningitis. I felt a little relief that it could be viral rather than bacterial. They would still need to confirm with a lumbar puncture that she was due to have the next morning."

“The next morning the blood results had come back quicker than expected and they had grown the streptococcus pneumoniae bacteria, which was really dangerous, and they advised that she had septicaemia. I remember swearing and getting that sick heavy feeling, panicking and asking the doctors if she was going to lose her limbs? They responded ‘no’ but that they were concerned for her life."

So sick, scared and helpless

“I just felt so sick, scared and helpless. The lumbar puncture confirmed bacterial meningitis and a rare strain of the pneumococcus bacteria."

“The next three weeks went by in a blurry rollercoaster. Just when we thought things were getting better, uncertainties would be thrown in. My biggest fear was the antibiotics not working. Luckily, Bea responded well and was moved out of HDU after two days. I remember coming out of HDU and being in a room on the ward with no nurses around and not really knowing what to do. This lovely nurse came in and seeing I was upset, gave me a big hug. I will never forget that hug. She really genuinely cared. I can’t remember her name and don’t remember if I saw her again, but I will never forget her."

“Because Bea was so young with small veins, coupled with the amount of drugs she was being pumped full of, the cannulas kept failing. On one occasion her cannula failed and the medication started going into her foot and leg. It left a big gaping hole that caused a bit of concern but luckily it didn’t get infected (not surprising perhaps given the amount of antibiotics being pumped around her body)."

“After the nurses had used most of her good veins there was the suggestion of putting a long line in. That was one of the next most stressful nights. Her cannula had failed and we were panicking that if her antibiotics didn't get administered she would get worse. She had to be sedated but after waiting for too long for the consultant, she was awake. After two attempts the long line went in. It needed to be checked with an x-ray. The x-ray showed that it was coiled and so was useless. We had to go back to the ward and it was past the time that she needed her next lot of antibiotics."

Panicking and anxious

“I was panicking now and feeling constantly anxious. We had to wait for the registrar who was the most experienced with putting long lines in. It took her three attempts and I kept hearing Bea crying out for mumma - I couldn't go in there, I couldn't bear to see her in pain. Her daddy was with her for this and the lumbar puncture. Finally, after the third attempt it was in and luckily the x-ray showed that it was in place!"

“Recovery was slow but you could see daily improvements in her mood. Luckily her personality was still there and she was even learning new words, which was really reassuring. Her eye was still droopy up until the last day of her antibiotics but the pupil was reacting normally, so they weren’t concerned that her eye had been damaged from the swelling on her brain."

“In those dark 24 hours, waiting to see if the antibiotics and steroids would work and if they would limit longer-term issues, all you want is a glimmer of hope, some positive stories to focus on. I was told by the consultants and nurses not to Google it - naturally I did and came across Meningitis Now and found only a few positive stories."

Sharing my story to show there is hope

“This is why I'm sharing our story. We want people to know that there is hope; that you can go to the edge of hell and back again unscathed. Two years on and Bea has passed her hearing tests and recovered well. She is due to start primary school in September and seems to have only been left with a large scar on her foot. But that is a very small price to pay."

“I suffered with PTSD from the experience and still have anxiety attacks when she is ill, especially if she has a fever and is being sick. You just can’t help those feelings rushing back. If you are struggling with anxiety or PTSD then please seek help. I did and it really helped."

“Physically, all seems to be fine, but mentally and psychologically, the whole experience has had an impact on all of the family.”

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