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Tilly's story

12th March 2018

Sarah Lockey is the new Community Fundraiser for the North of England at Meningitis Now. Our cause is very close to her heart as her daughter Tilly contracted the disease at 15 months old. Here she shares their heart-breaking, yet inspirational story

Tilly's story

"It all started in the middle of the night when she started whimpering in her cot.

"She had a slightly raised temperature and I put it down to teething and gave her some medicine. Tilly went back to sleep but started whimpering again about half an hour later. This time Tilly was sick so I changed her and brought her into bed with me so that I could keep a closer eye on her.

"As my husband was getting ready for work the following morning I noticed that Tilly’s breathing was very erratic. I brought her downstairs with me and phoned the doctors straight away to which they told me to bring her straight down.

"I woke up my eldest daughter and we went to the doctor’s surgery to be told that Tilly had an ear infection, and just to give her some ibuprofen for children. At this point Tilly could not lift her head off my chest, she was a very poorly little girl. The doctor could see this but I trusted his judgement.

"We went to my parents’ house so that I had support looking after Tilly, while I took my other little girl to nursery. It wasn’t until we were changing Tilly’s nappy we noticed some very scary looking dark bruise-like marks all over her nappy area. I was terrified. I have never been that scared in all my life. I knew at that point something was horrendously wrong.

Every parent’s worst fear

"We grabbed a tumbler glass from my mam’s draining board and pressed it against her skin. The marks did not disappear and instantly meningitis came into my head.

"I ran to the telephone and called an ambulance, mentioning all the symptoms of rapid breathing, high temperature, not interested in anything and not wanting to be picked up, and especially the marks on her skin, and that a doctor earlier in the day had diagnosed her with an ear infection. I told them that I thought it was meningitis.

"I remember turning around to look at Tilly. All of a sudden her skin started to look mottled with a greyish / blueish tinge. She started to be sick and I grabbed a hold of her and ran out of the door to meet the ambulance. They were ready for her and they agreed that it looked like meningitis and they gave her a shot of penicillin straight away. Thank God they did that – otherwise I don’t think Tilly would have made it to the hospital.

"They strapped her up to the monitors at the back of the ambulance and her vital statistics were off the scale. She was drifting in and out of consciousness and I felt so helpless. I never ever want to feel that helpless ever again - and to this day it keeps me motivated to help people as much as I can.

"We arrived at the University Hospital of Durham and they were ready for us. The ambulance doors swung open and Tilly was grabbed from my arms and they ran with her into A&E. There were a lot of nurses and doctors buzzing around her taking samples and cutting off her clothes. A consultant sat me down and told me that they thought my fears were correct, that it was meningitis septicaemia, and that it was likely she would die. I started to be sick.

"My husband Adam arrived at the hospital from work after receiving a voicemail that made absolutely no sense from me. He was my rock through it all and never lost faith that our little Tilly, the absolute ray of sunshine in our lives, would win this fight.

Keep fighting and never give up

"Meningitis septicaemia strain B was diagnosed – an apparently rare illness, which at the time there was no vaccination for.

"Tilly was transferred straight to Newcastle General Hospital where they have a Paediatric Intensive Care Unit. They told us to come and say our goodbyes because they had to close down her body and allow it to rest – it was just the machinery keeping her alive. They didn’t expect her to survive it.

"We went in to see her but we didn’t say goodbye - we told her that she had to fight it and listen to our voices.

"Tilly was given a blood transfusion in the ambulance on the way to the hospital. We were not allowed to be with her or follow the ambulance. We were told to go home and pack because if she did survive this ordeal, we would be in hospital for a long time.

"I remember going home thinking about life without Tilly and walking into her nursery sobbing uncontrollably. I picked up her first ever teddy that we bought for her the day she was born and packed a bag full of clothes including her coming home outfit. I was naively packing her a pair of jeans not knowing the horrendous state her body might be in if she survived. I was determined that I wasn’t coming home without her.

Hoping for a miracle

"We arrived at Newcastle General Hospital and sat in the parents’ room for what seemed like ages, not knowing if she had survived the journey. I read leaflets on meningitis getting some comfort from the words that read, “Nine out of ten children survive with no further complications".

"The door opened and the nurse came in and asked us if we would like to see our daughter. I was so grateful and relieved that she had made it this far.

"She looked so tiny in the standard single bed, but what we saw hardly looked like Tilly anymore. The bruising was all over her face and neck, her body was swollen and her hands had already started to turn black and claw over. We got such a fright.

"Norman, her nurse, was standing by her side and I made him promise me that he would really take care of her and help bring her back to us. I mentioned the information that I had learned from the leaflet that nine out of ten kids get through this. Norman said, “Yes. However, Tilly is at the sicker end of that scale".

"Every day I asked the same question – will Tilly survive today? And the answer was the same every day - “We don’t know".

"On the fourth day Dr Choudry did his rounds and I was shaking. He is an amazing doctor but I was so scared to hear what he had to say. He could tell us the best or the worst news.

Against all the odds

"He got to Tilly’s bed and looked at my scared face and smiled at me. I burst into tears and he said. “She’s doing it. She’s doing it against all the odds, she’s fighting meningitis. She’s getting better".

"I collapsed in a heap and all of the nurses who had been looking after her every day shed a tear also. “However,” he said and pulled back the blanket off her devastated body, “the disease has really damaged Tilly and we won’t know the extent of the damage until it settles".

"Tilly’s little body was covered in black patches from the septicaemia. Her hands and toes were already hard and dead. She had massive deep sores and ulcers all over her skin. My baby looked in so much pain.

"Tilly had shown so much strength already fighting for her life - now it was my turn to be strong for her. Whatever it would take to keep her alive we would make sure she would live the most fulfilled life she could. It was then that they decided they would have to amputate.

"The day came when I got to hold my baby again and I could have sat in that chair and not moved for the rest of my life. I was so content. I remember feeling so grateful and thanking God for all of his help. I never felt the need to pray so much before, but I needed to and I felt that he helped me.

"Tilly was transferred into a different ward for recovery and a lot of her care was left to me and my husband. We felt such a difference transitioning from having amazing qualified doctors and nurses by Tilly 24 hours a day, to having to take a lot of the responsibility ourselves.

Blood donors: Giving the gift of life

"Tilly had nine blood transfusions to help her survive. Thank you so much to each and every person that gives blood, you might not realise it but your donation can literally be the gift of life.

"At this point we found out she needed another blood transfusion as she had contracted a secondary infection. We had thought we were through the worst and in recovery, so to be hit by that was very scary.

"Ever the fighter, Tilly did it though – she pulled through.

"The next thing we had to concentrate on was getting her to eat something and hear her voice again. Since she had contracted meningitis she had been completely mute and displaying no facial expressions. We were told it was probably because she had been in so much shock.

"We tried all sorts – reading funny stories, watching DVDs, playing music etc., but the moment came when I was playing with a helium balloon and I battered it hard towards Adam and he shouted out a playful “Ow!” and she giggled! We couldn’t believe it. Adam then punched the balloon back at me and I shouted out an “Ow!” and she giggled again, a little bit harder this time.

"Typical Tilly – her giggles were music to our ears. Soon after, we discovered also that she would eat if her big sister fed her, so by accomplishing both tasks we were free to go home.

My promise to Tilly

"While we were at home and waiting for the appointment to go back in and get her hands amputated, Tilly’s toes were dropping off one by one naturally. As you might imagine, that was an incredibly hard thing to deal with. At this point we got the appointment to go in for the amputations. The night before Tilly went into hospital I sat her on my knee, held her close and made her a promise. I promised her that I would do everything I could to give her her hands back – and to this day I continue to keep that promise."