Meningitis in your words

Amelia Lancaster's story

  • Location: England
  • Categories: Bacterial meningitis
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Recovery with after effects
  • After effects: Amputations
Amelia Lancaster
Melinda talks about how having meningitis and septicaemia at ten months has affected her daughter, Amelia.
September 2012​

The day had started like any other normal day and Amelia was her normal self, then at sometime mid afternoon she got a really high temperature and went really pale and sleepy.

We had phoned up NHS Direct and they had told us it was most likely chicken pox, and this is when I noticed she was making a funny cry if I tried to move her or pick her up. Then I saw her soft spot was bulging and she was starting to react to light. My husband let them know this but they told us to put her to bed, she'd be fine, even though deep inside I felt something more was wrong.

My husband put her in bed but she wasn't staying settled. She was making a really weak moaning cry so I finally went and checked on her and realised she had been sick in her cot. 

"I decided enough was enough and we had to bring her to the hospital", - says Melinda.

The whole drive there she was in and out of sleep. When we got to hospital we told them all her symptoms and they told us to wait while they got someone to check her. We laid her across two seats which is when we noticed she had started to use her stomach muscles to breathe and was really struggling. We informed them of this and they got someone immediately. 

They checked her vitals and she was extremely tachycardic so they got her some dioralyte in case she was dehydrated to bring the heart rate down. She couldn’t keep the fluids in so they put in a cannula. 

No-one by this time even uttered the words meningitis, but I knew in my heart it was what she had. A doctor came to examine her; they couldn't see anything else wrong with her but there was a spot the size of a pinhead that looked suspicious so they did a blood culture.

After the nurse gave her what seemed like an insane amount of fluid she left and about five minutes later my husband said: "I didn’t know Amelia has a mole" and I said: "She doesn’t" and I opened her nappy and she had started to be covered in the rash from the groin up. "I knew then at that moment that we were in for a long night and never hit the button to call a nurse so fast in my life", - says Amelia's mother.

From that moment it was just a flurry of nurses and doctors and she went from being stable-ish to dropping again. We were told she had to go to PICU because the amount of fluid they would need to give her would possibly make her lungs unable to function, and she needed sedating and intubation.

She was whisked away from us and we sat for three hours while they tried to stabilise her. Finally they came and got us but warned it may be a bit emotional, and when we walked over to her bedside she didn't look like my daughter any more. She had a purple spot rash top to toe, was bloated from all the fluids, had lines coming out from everywhere and the horrible tube down her throat. They said it was definitely meningitis, they were just waiting for the blood culture to come back to know which it was. We now know it was type b bacterial meningitis and she was suffering from septicaemia as well. 

At that point I asked them to call for the priest. He came and asked whether or not she had been christened, which she had. He then decided to say a little prayer over her for us; he brought us all to her bedside along with family that came to be with us and they closed the curtain around her. He then started to pray and at that moment her heart rate started to come down. 

In the early hours of the morning she finally stabilised and when the doctor came back he was amazed to still see her there and at what her heart rate actually was. He said we could slowly start looking at the possibility she could pull through. 

From all the fluid they had given her, her hands and feet had started to go dusky. He thought she was suffering from compartment syndrome where her muscles were so full of fluid their casing was squeezing and cutting of the blood flow, and they thought she may lose both legs from the knee and her one arm from the elbow. 

No-one told us exactly what was going on, just that she was very poorly and they were having problems stabilising her. It wasn't till late afternoon that the doctor sat us down in the parents’ room and told us they didn't think she would survive as the fluid level was becoming toxic. They would at some point have to stop giving it to her and it was the only thing taking down her heart rate. This was the worst thing for me to hear as her mother.

"This was hard to hear but at least she was still with us. We had to sign papers for her to go immediately into surgery to have the muscle compartments affected cut open to drain the fluid, and we hoped she was stable enough to make it through surgery."

She pulled through – and the colour even came back to her feet. However the fingers and hand were still dusky and they also discovered her body wasn't creating cortisol, which helps the body cope with stress and trauma. They started to give her hydrocortisone and she was on this for a further year and a half. Her adrenal glands have only just started to produce this on their own again and she also wasn't passing fluid enough, so she needed to be on dialysis to remove the toxins until they finally got her body passing enough on its own.

Amelia spent a total of two months in hospital recovering. She came home in bandages protecting her hand which had started to die, and bandages on her leg and arm protecting the skin grafts. She needed to close the wounds from the surgery to her muscles and in the end they only had to remove her fingers and thumbs from her hand, which was a great difference to her original prognosis. Luckily they did the surgery at the right time to save her legs and remainder of her arm, however it left her leg muscles very weak and she only started walking at two years old.

She is now three and as happy and active as any other three year old. She has some speech delay but, other than the scars from the rash and surgery and missing fingers, you would never think she had suffered so much at such a young age. 

She spent a total of two months in the hospital and we are so grateful to her doctors that they never gave up trying to save her and acted quickly enough to save her legs. There is no way we could ever repay them.

Melinda Lancaster
May 2012

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