Sarah Lockey

Meningococcal disease at 15 months

Meningococcal disease

Sarah Lockey talks to Meningitis Research Foundation about how having amputations as a result of meningococcal septicaemia has affected her daughter's life

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

Bedtime, and both my beautiful girls, Tia, 3, and Tilly, went to sleep and Adam (my husband) and I went to bed later that night not knowing what the night would bring.

It was about 4am and we were awoken by Tilly whimpering (not crying) in her cot. I rushed in to check on her and she felt a bit hot. She was at the stage of teething so I put the temperature 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. I changed her and put her into bed with my husband. I asked Adam how she was and he said she was just sleepy and cuddling in. I lay beside her for the next two hours just watching her, making sure she was OK.

As Adam was leaving for work at about 7.30am I noticed Tilly was asleep but breathing very rapidly. This will always stick in my mind. I carried Tilly downstairs so I could ring the doctors. Tilly was normally so lively and would climb down from the sofa and play with her toys as she waited for her milk. Today she didn't move she just sat there uninterested.

I got through to the doctor and explained about the symptoms so far
  • The temperature
  • The rapid breathing
  • The lack of interest in her toys
I was told to bring her straight down. Tilly cuddled in so tight. She would not lift her head and she was very still and quiet. As I walked into the doctor's room he exclaimed: 'Oh Tilly doesn't look well at all does she?' I explained the symptoms and he checked her over fully and diagnosed an ear infection. He reassured me that a high or low temperature can cause rapid breathing, so it was the ear infection causing the high temperature and the high temperature causing the rapid breathing. I was to give her ibuprofen and she would be right as rain within 36 hours.

I popped in to see my mam and dad to tell them Tilly was ill and they offered to help as I needed to take Tia to nursery. After I dropped Tia to nursery I returned to my parents' home. My dad said Tilly had been sitting on his knee absolutely glued watching Teletubbies. If meningitis had crossed my mind this would have been an obvious symptom - the vacant staring - however I was still thinking ear infection as the doctor diagnosed.

Throughout the day Tilly would drink but she would not eat (which is normal if you are not well) but one thing that I noticed her doing often was drifting off to sleep as she was very tired 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 Mam changed Tilly's nappy again before we left. She had removed Tilly's nappy and 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 and I feel scared - really scared). I scream for my sister to grab a tumbler to press against the skin. The marks did not go away under the glass. All I can think of is meningitis and 'no not my baby'. 'Things like this only happen to other people not to my baby'.

I rang 999 and explained I thought my child had meningitis and needed an ambulance right away. The questions they asked seemed to go on and on. I left a voicemail for Adam. It was a fumbled message of meningitis, not coming to get him from work, to meet me at the hospital. My mam had wrapped Tilly in a blanket and Tilly was holding her arms out to me crying 'mum mum, mum mum'. Her skin was turning mottled and bluey-grey and she started projectile vomiting. I was hysterical and took her from my mam's arms and ran to the end of the street to meet the ambulance.

Once inside the ambulance Tilly was laid on a bed and they removed the blanket. I was horrified to discover the bruise-like marks had taken up a huge percentage of her body and were still appearing one by one joining together to make bigger bruises. The ambulance driver recognised it straight away and gave Tilly a shot of penicillin which I believe really saved her life. He radioed through to University of Durham Hospital warning them there was a serious case of meningitis coming in. Tilly was strapped up to a heart monitor showing that her heartbeats were off the scale and given oxygen.

I held Tilly in my arms. I tried to keep her awake as she drifted in and out of consciousness. As I stroked her face I told her she was going to be OK and that mummy was here and I wouldn't let anything bad happen to her. 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 and I felt useless! A bad mother - how had I let this happen to my baby?

We arrived at the hospital and Tilly was snatched from my arms and surrounded by about 10-15 hospital staff. I was by her bedside as they cut off her clothes and started to quickly insert drips and give her jabs, while my sister sat at the back of the room and looked on in horror.

A consultant told me Tilly was very seriously ill with what they were treating as meningococcal septicaemia and was likely to die. As those words came out of her mouth I started to be violently sick, apologising for making a mess. My sister looked on in horror as I mouthed 'she could die' and she ran out to phone my parents who were looking after Tia.

I sat there watching the doctors work on Tilly and she was still calling for me. I kissed her forehead and told her mummy was still here and that she would be coming home with me. I would never leave this hospital without her. Silly things started to flash through my mind of 'how would I explain this to Tia if her beloved little sister died? She was her best friend'. How would I ever be able to write a birthday card again without Tilly's name on it! Horrendous thoughts! At this moment Adam walked through the door. I ran to him and tearfully said 'she might die'. 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 parents' room while they took tests to confirm the disease. The consultant came back to see us and confirmed meningococcal septicaemia and that they had called Newcastle General Hospital to transfer Tilly to the Children's Intensive care unit there (PICU). He asked me to come and see Tilly again before they put her to sleep, as it could be our last time to see her awake. Shaking and crying we went to her bedside. This was Adam's first glance at Tilly overtaken by this disease. She was bruised all over now, even her face. It looked like she had been badly beaten up and we were terrified what this disease was doing to our precious baby girl. However, she was now in the right hands to get better and we would fight this all the way and knew that Tilly wouldn't give up!

The doctors and nurses from Newcastle General turned up and we talked to Dr Chowdry, the consultant. He was straight to the point and said 'children die of this disease'. He then explained Tilly was in a very bad way but they would do what they could. They would transfer her by ambulance and Tilly 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. To be told that and not be able to go with her was very hard but they needed to look after Tilly and didn't need to be distracted by an emotional mother.

We went home to pick up some things. I ran into Tilly's bedroom and grabbed her coming home clothes and the teddy-bear I had given her when she was first born. Then I went into my room holding the bear and just broke down. This couldn't be happening. Nothing in the world now mattered but my kids! I want Tilly to crawl through that door with her cheeky grin and giggle shouting HIYA at the top of her voice.

We drove back to the hospital in silence, only with our thoughts, not knowing if Tilly had even made it to the hospital. As we arrived 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 and told us that Tilly had made it to the hospital and was receiving the treatment she needed to beat this. We were so overwhelmed that our little fighter had battled through her blood transfusion on the way and was still fighting on.

Tilly was lying there alien-like. She was so swollen by all of the fluids. 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. I couldn't believe that a disease like this was even still around. It felt like I was back in the early 1900s where diseases that looked like this were common. I had read about meningitis before but naively never in my life had I thought this is what it looked like!

Days passed and Tilly was still in the same way - critical but stable. Stable was good, however it could turn nasty at anytime and she would either get better very slowly or deteriorate quickly. 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 that I could cope with ANYTHING life threw at me, 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. As he approached I started shaking as I was so scared of what he would say. He looked at Tilly and studied her for a few minutes. Then he turned to me and winked and said 'She's getting better'. I have never been so relieved in all my life. I loved this man, I loved these nurses, I loved everyone. I was going to get to cuddle my baby again.

He said a big HOWEVER - I sort of knew a however was coming but I made a mental note that it was something we could deal with because we could have Tilly back. We have a second chance to make my little girl's dreams come true. He pulled the blankets off Tilly and her body looked destroyed. It was a shocking thing to see. 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 that were open and extremely sore, and he said Tilly would need amputations.

Even though I had prepared myself for the HOWEVER I was still really shocked and shaken when I found out she would lose her hands. I remember going back to the hostel and cried and cried and cried thinking 'how is she going to get through life without hands?' I started to think about what you use your hands for. The answer is EVERYTHING!

I rang my family and friends to tell them Tilly was getting better but was to lose her hands. Tilly's Godparents live in Northampton and wanted to do something so said they had a great idea. They wanted to set up a trust fund for Tilly to help with anything I thought she needed. She had fought this disease to live and we wanted to club together to make sure that in life she would definitely do that. Matt (Tilly's Godfather) put together a website and decided to ask celebrities to donate a handprint for us to auction. They were so supportive and it took my mind off the bad and stopped me from having that useless feeling.

Tilly opened her eyes and was taken off the ventilator and it was the first time I was able to hold and cuddle her again. It felt amazing and I didn't want the moment to end. I told her I was so happy she had got better and that mummy was so proud of her and I would take her to see Mickey Mouse.

We were moved to the recovery ward and able to sleep in the same room as Tilly. However it was very daunting as Tilly had received such intensive care up till now and this ward was looked after a lot differently and we were worried. The nurses however were wonderful and looked after Tilly very well.

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 Tilly giggled and giggled as Adam and I played with a helium balloon. It was great to hear our little Tilly coming back to us.

However during this three-week stay 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 up through her body had caused an infection which lead to another form of meningitis. This blood transfusion was successful and there were no other problems.

When I was in recovery with Tilly I decided I would like to give something back to Meningitis Research Foundation. I couldn't bear to think of another child and family going through this horrific ordeal. I organised an event which took place just after Tilly came out of hospital. The community pulled together and with thanks to everyone involved we managed to raise approximately £10,000 for MRF. Local newspaper the Evening Chronicle were invited to the event, covered the story and pictured Tilly with her black hands. The newspaper rang me up and said they knew I had been looking into prosthetic hands and knew the hands we were keen to go for were very expensive - over £20,000 a pair that would need replacing as she grows. They wanted to help us to raise £20,000 to buy the first set. I was so overwhelmed at this offer - I had never heard of a newspaper to do this before. They told me to write a letter for them to publish and they would put out the appeal but it may take months to come in, but hopefully it would. The readers of the Evening Chronicle raised the money within 48 hours! I was in shock and in tears for this kindness!

We decided that joined together with the 'Give Tilly a Hand Appeal' it would now not only be for Tilly's personal needs but for the upkeep of these limbs too. A charity called Meningitis Help offered us their support and use of their charity number so we could legally fundraise for Tilly. If we were to accept the first pair of hands then we would have to be sure to have enough funds available to replace them for the rest of Tilly's life, and that was a huge commitment. This is what I do now. I dedicate my life to looking after my family and build up Tilly's trust fund.

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 her own style but at least she does it. Tilly took her first steps at the age of two and a half.

She received her first prosthetic hands from Dorset Orthopaedic. She is three years old which makes her 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. We want Tilly to be at the forefront of science so she can always have the best hands. We are hoping to move from the Myo electric hands to the i-limb but have been advised that the i-limb is unavailable until Tilly is 13 years old.

We are having our Celebrity Handprint Auction on September 5th 2009 at the Newcastle/Gateshead Hilton Hotel and hope to raise a lot of money for Tilly's future and limbs. With thanks to everyone that have been involved with The Give Tilly a Hand Appeal. Your support has helped her become the confident and happy little Tilly that we all know and love.

Sarah Lockey