Meningitis in your words

Daisy Marshall's story

Location: Scotland
Categories: Pneumococcal
Age: Baby 0-1
Relationship: Child
Outcome: Recovery with after effects
After effects: Other

Almost exactly a year ago my daughter was diagnosed with pneumococcal meningitis. She was five months old and had never been ill before.

I remember waking in the middle of the night and touching her fingers and they were burning hot. She had been fine all day – a little off her solids but was breast feeding fine. I stripped her down and took her temp which was 40. I called NHS 24 and as I was on the phone she started vomiting. I got a taxi to the emergency doctors and they told me she was fine but wanted her to go to hospital as she was so young.

She was full of life at the hospital giving all the doctors smiles and stealing all their equipment. We were kept in all day and night as her temp didn't seem to be settling. Me and her dad stayed with her and she was still happy and feeding. That night, after my partner left, she seemed to be getting really ill. The doctors assured me she just had a bad virus but by the morning I wasn't happy.

Daisy's mother says: "She was lying limp in my arms only making any noise if I tried to put her down. I called my partner and told him to get up to the hospital as soon as he could."

The doctor came and did his rounds and I told him I wasn't happy. He took one look at her ran his hand over the top of her head and she was taken out of my arms. They told me they were going to do a lumbar puncture as he was almost positive she had meningitis. The lumbar came back positive. I was devastated; I knew hardly anything about meningitis except it killed! We spent the next day in HDU and she seemed to be getting better. We were put into a side room and told she would get out in a few days and we could just bring her up for antibiotics. I was over the moon, my baby was going to be OK.

Everything was looking up. We had several student doctors coming in to do a paper on her as she was an unusual case who didn't present any of the symptoms. About an hour after the last student left I was giving her solids when I noticed her lips clapping together gently. I watched for a while not quite understanding, then I saw her gazing off up to the corner. I pressed the emergency buzzer and it’s all a bit of a blur from there. She began to have a horrendous seizure. I was dragged out of the room as I was screaming and so was her dad. I remember her bed being surrounded by so many doctors.

Her seizure lasted over an hour and eventually we were put in a small room with our family. Every time footsteps went past the door I thought they were coming to tell me she was dead. The door opened and she was lying in a bed in the corridor with tubes and machines everywhere. They wanted us to see her as she was going for a brain scan.

We waited for what felt like hours and the doctor came back with the heartbreaking news that she had suffered brain damage and a stroke. I feel so guilty to think it was happening to her in my arms and I didn't even know. I’m the person who is meant to protect her and I couldn't do anything to help. The next few days were terrible, she took seizure after seizure and they were forced to transfer her to Edinburgh Hospital for Sick Children so she could go into intensive care. It now felt so hopeless and we were told that we probably wouldn't get to take her home. She was loaded into the ambulance and they wouldn't let me travel with her. It was the first time in her life she had been away from me, I had never even had a couple of hours away, she even slept in our bed every night.

"I kept thinking about her not being with me and knowing it wasn’t a feeling I could get used to."

Once we got to Edinburgh they did bloods and decided they had a better antibiotic so added that to the one she was already getting. From there she improved, was let out of intensive care after one night and opened her eyes for the first time in days. I was so scared after the brain damage she wouldn't remember me, but she did and was back to her usual self of not letting me put her down for two minutes. They were so strict there and I wasn't allowed to sleep with her at night so ended up back and forward to the ward constantly every night as she wouldn't settle without me.

The staff at Edinburgh were amazing and I have no doubt that if she hadn't been sent there and hadn't got that second antibiotic we would have lost her. After a week we were transferred back to Ninewells in Dundee . It was so good to be home with our families. Day by day Daisy was improving; the side that had been affected by the stroke was getting so much better and her seizures had stopped. But there was still the question of how much damage had been done.

After a year of follow-up appointments Daisy has now been discharged as she doesn't seem to be suffering any side effects from the brain damage, has regained full movement in the side affected by the stroke and hasn't had any seizures. I am so thankful that my daughter is still with us and has recovered so well. She is our whole world, the most friendly, affectionate child anyone has ever met.

Tara Winona Tierney
March 2012