Meningitis in your words

Sarah Lockey's story

  • Location: England
  • Categories: Meningococcal
  • Age: Toddler 1-3
  • Relationship: Parent
  • Outcome: Recovery with after effects
  • After effects: Amputations
Sarah Lockey

Sarah Lockey talks how having amputations as a result of meningococcal septicaemia has affectedTilly's life.

Sunday 20th January 2007 was a happy day. Tilly was 15 months old and it would be a day I would always remember. It was full of joy and laughter as Tilly took those long-awaited first steps.

Bedtime, and both my beautiful girls, Tia, 3, and Tilly, went to sleep but at about 4am we were awoken by Tilly whimpering (not crying) in her cot. She felt a bit hot but was at the stage of teething so I put it down to that and gave her Calpol. At 5.30am I was awoken again by Tilly whimpering. She was sick as soon as I lifted her from the cot and felt a bit hot again. 

At about 7.30am Tilly was asleep but breathing very rapidly. I took her downstairs so I could phone the doctor. She was normally lively and would play as she waited for her milk, but she didn't move - she just sat there uninterested. 

I got through to the doctors, explained her symptoms and was told to bring her straight down. Tilly would not lift her head and was very still and quiet. The doctor checked her over fully and diagnosed an ear infection. I was to give her ibuprofen and she would be right as rain within 36 hours. 

Throughout the day Tilly would drink but not eat, but one thing I noticed her doing was drifting off to sleep and then jumping herself awake again. 

Throughout the day I would cuddle her and change her nappy and she would cry and not want to be held - she would just want to lie down and try to sleep. It was time to pick Adam up from work and my Mam was changing Tilly. As she removed the nappy there were small scattered purple bruise-like marks all over her nappy area and one big black bruise going up her bottom. I was terrified (even as I'm writing this the adrenaline rushes through me). I screamed for my sister to grab a tumbler to press against the skin. The marks did not go away under the glass. 

I rang 999 and explained that I thought my child had meningitis and needed an ambulance. I left Adam a fumbled message of meningitis, not coming to get him from work, to meet me at the hospital. Tilly's skin was turning mottled and bluey-grey and she started projectile vomiting.

"I was horrified to discover the bruise-like marks had taken up a huge percentage of her body and were still appearing."

In the ambulance Tilly was laid on a bed and I was horrified to discover the bruise-like marks had taken up a huge percentage of her body and were still appearing. The ambulance driver gave Tilly a shot of penicillin and radioed through to the hospital warning them there was a serious case of meningitis coming in. 

I told her she was going to be OK and that mummy was here and I wouldn't let anything bad happen. As I said these words I felt helpless. As a mother all you want to do is protect your babies and Tilly was lying there helpless in my arms. How had I let this happen to my baby? 

At the hospital Tilly was snatched from my arms and surrounded by hospital staff. I was by her bedside as they cut off her clothes and started to quickly insert drips and give her jabs. A consultant told me Tilly was very seriously ill with what they were treating as meningococcal septicaemia and was likely to die. 

Adam walked through the door and everything must have been so confusing for him as the last thing he had heard was she had an ear infection. We were shown to a parent's room while they did tests and the consultant came back and confirmed meningococcal septicaemia, saying they were transferring her to Newcastle General Hospital's Children's Intensive care unit. 

Dr Chowdry, the consultant from Newcastle General, explained Tilly was in a very bad way but they would do what they could. They would transfer her by ambulance and she would need a blood transfusion on the way, and we would not be able to be in the ambulance. This was to be Tilly's most critical journey. She could die on the way. 

We drove to the hospital in silence, not knowing if Tilly had even made it to the hospital. We were shown to a parents' room and sat there for what felt like hours reading leaflets on meningococcal septicaemia. I grew strength from reading one paragraph that said '9 out of 10' children diagnosed with this disease recover with no further problems. Finally a nurse came and told us Tilly had made it to hospital and was receiving the treatment she needed to beat this. 

Tilly was lying there alien-like. She was so swollen by all of the fluids and her hands and toes had started to turn grey and shrivel slightly. I can remember saying to Adam: 'Oh my god it looks like she has been severely beaten up and set on fire.' I was terrified for her.

Days passed and Tilly was still the same - critical but stable. Every day I would ask the nurses 'Can you just tell me if she is going to live' and they couldn't give me an answer. I said I could cope with ANYTHING, deaf, dumb, blind, as long as I had her back to hold and love and give her a good life.

On the fourth day Dr Chowdry came on his morning rounds. He looked at Tilly for a few minutes, turned to me, winked and said 'She's getting better'. I have never been so relieved in all my life. I was going get to cuddle my baby again.

"I was still really shocked and shaken when I found out she would lose her hands. I cried and cried thinking 'how is she going to get through life without hands?' "

He said a big HOWEVER - and he pulled the blankets off Tilly and her body looked destroyed. Her hands and toes were black and hard like coal and bent over into a claw. Parts of her legs were black and she was covered in deep ulcers all over her body, and he told us Tilly would need amputations. I was still really shocked and shaken when I found out she would lose her hands. I cried and cried thinking 'how is she going to get through life without hands?' 

Tilly opened her eyes and was taken off the ventilator and it was the first time I was able to hold and cuddle her. We were moved to the recovery ward and able to sleep in the same room. We noticed Tilly looking at her little black hands and then she started to try and pick her toys up. It was amazing. It was like she thought 'well this is what I have now so I need to learn how to use them'. I was so proud of her. However she still had not made a sound or smiled. We were told it was because of the trauma and it would come in time, and it did. About a week and a half later Tilly giggled as Adam and I played with a helium balloon. 

However during three weeks in recovery, Tilly became ill again and another blood transfusion was ordered. I was petrified. This would be her tenth transfusion. One of the lines going through her body had caused an infection which lead to another form of meningitis. But this transfusion was successful and there were no problems.

Tilly got her hands amputated in March 2007. Her toes dropped off at home. We have watched our baby girl in so much pain and be so brave. She truly is an inspiration to everyone she meets and manages so well without hands and walks unaided in normal shoes. 

She has received her first prosthetic hands, and at three years old is the youngest child to receive that kind of electronic hand. She takes them to nursery every day and is learning to write and draw with them on. 

Sarah Lockey
July 2009

Detailed information about the after effects of meningitis

Mike Davies contracted bacterial meningitis in 2017. This is his story.
Stories that inspire us to create a world free from the diseases.

Whether you are living with the after effects of the diseases or coping with the death of a loved one, we are here for you.

Provide a lifeline for those in need
Provide a lifeline for those in need
£6/€7.20/$8 pays for a 30 minute call from a trained support officer.

They listen to the issues faced by someone struggling with the impact of meningitis, and provide detailed information and support.
Getting information and support

The MRF Membership and Support team are here for you for any questions you might have about meningitis and septicaemia and their effects on you, or your family and friends.

You can contact us via our helpline, email, social media, Live Chat or by using our use our Get in Touch form.

Tel: 080 8800 3344 (UK) 1800 41 33 44 (Ireland)