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Lillie Mai's story

24th March 2015

Lillie Mai, of Maryport in Cumbria, was a healthy and happy 14-week-old when she developed a runny nose and got the shivers. There were no obvious signs of meningitis and first-time mum Belinda thought she’d just come down with the cold she’d had the week before

Lillie Mai's story

But Lillie was critically ill and doctors only gave her a 2 per cent chance of survival.

The family refused to turn off her life support and, despite multiple amputations, Lillie Mai kept fighting. Today, she is a bright youngster learning to walk with her prosthetic legs. Mum Belinda tells their moving story.

“It was 3.20am and Lillie woke for her usual feed. She was really cold and shivering but drank her bottle and I put her in bed with me and her dad to keep her warm as it was a frosty night. She went straight back to sleep with us, which wasn’t unusual as she was a really good baby and only woke once every night for her feed.

The alarm went off at 7.20am for Rupert, Lillie’s dad, to go to work. Lillie was still asleep. This wasn’t unusual either as she normally slept until 8 to 8.30am. While Lillie was still sleeping I went for a quick shower, and got dressed and ready to start the day. By now it was 9.00am.

I wasn’t worried as I thought Lillie may well just be having a lie in, so I made myself a cup of tea and did a bit of tidying. By this time I thought she would be awake but she wasn’t. I went upstairs to check on her and she seemed fine, but I woke her as she seemed very cold again. As I picked my baby girl up she screamed in pain and her cry was hoarse, as if she had a really sore throat.

My first reaction was it was a bad cold. I made her a bottle and she drank it all and seemed a lot better. I got Lillie ready as we were going to my mum’s for the day as Rupert was at work. I was really worried about Lillie and rang my mum for advice and she told me to go straight to her house so she could check her over. When we got to my mum’s Lillie was full of smiles and drank another bottle. Her temperature was fine, so we assumed she had a little cold.

I told my mum I was going to take her out for some fresh air and I needed a few things from the shop. I called at my friend’s around 12 o’clock and Lillie was fast asleep. I had a cup of tea with my friend and Lillie was still sleeping. My friend said she is very quiet, so I explained what had happened during the night and in the morning. We woke Lillie and checked her again and to both our surprise there was a bruise like mark on her face. It couldn’t have been from her nails as she always wore mitts."

The look on my friend’s face said it all

“The look on my friend’s face said it all. She was terrified. She said nothing apart from ‘let’s get her up to your mum’s’, as she didn’t live far from there. As I burst through my mum’s front door I took Lillie straight from her pram and there were far more bruise like marks on her head. I stripped her and she was covered in a pin prick rash. My mum said call 999 and my sister did the glass test, like the paramedic on the phone advised. An ambulance was with us within two minutes. The paramedics wrapped Lillie in her blanket and she kept dozing in and out of sleep.

I was terrified. What the hell was happening to my daughter? In my gut I knew it was meningitis, but I kept this thought in the back of my mind. The paramedic gave Lillie a penicillin injection in her right hand and on the way to the hospital I was told to keep her awake and not let her drop into a deep sleep. I called Lillie’s dad Rupert to tell him what had happened and to get to the hospital.

We arrived at the hospital. My daughter was surrounded by about 25 medical staff nurses, consultants and doctors. They cut her clothes off and started checking her stats and temperature. This was a real living nightmare. I screamed “this isn’t real, we are all going to wake up.” The paramedic took me out of the room as I felt really faint and to look for Lillie’s dad as I never told him where to go in the hospital. He didn’t think it was as serious as it was. He came rushing into the room and could not believe his eyes - that a child who was as bright as a button the day before could now be lying on a bed critically ill.

The doctor told us to give Lillie a kiss and cuddle as they were going to ventilate her and it may be a long time before we would see her awake again. My heart was breaking at the sight of my precious innocent little girl lying there so poorly, her deep blue eyes so sad and nothing I could do. I wanted to take the pain away from her.

Lillie was transferred to an operating theatre as she couldn’t go onto the adults’ intensive care because it was closed due to swine flu. Lillie’s dad and I were given the devastating news that she had meningitis and was critically ill. She only stood a 2% chance of survival as she was so young and small and only weighed just over 10lb when she became poorly. She was a little doll.

Lillie was transferred to Newcastle Royal Victoria Children’s Hospital intensive care. The consultant advised us that Lillie was so ill he didn’t know if she’d survive being moved onto the ambulance bed. It would take up to two hours to get everything ready for her journey of 90 miles to Newcastle Hospital and even if they moved her she may not make the journey. We arrived at Newcastle Hospital at around 12.15am on the intensive care ward. We prayed Lillie had made the journey. We couldn’t travel in the ambulance as there was no room, due to a nurse, an intensive care doctor and a consultant travelling with her."

Tell me my daughter is alive

“We rang the buzzer on the children’s Picu and I asked straight away “please tell me my daughter Lillie Mai is alive!” The door unlocked and we walked onto the ward where my little girl was surrounded by machines with the most awful beeps and flashing lights. I will never forget my daughter lying there, covered in this rash that was turning her swollen body black. She was three times the size of when I last saw her due to all the fluids. She had dialysis going through her body as well.

The consultant advised us she was severely ill and was in a critical stage. Each minute she lived was a bonus. The night went by with me and my family sitting by her bed. She was moved into isolation. Lillie made no progress and her whole body was black. It looked as though she had been burned in a fire and the rash covered her from head to toe.

The doctors told us numerous times that she was brain damaged, as when they shone a torch in her eyes there was no reaction and that it was just the machines that were keeping her alive. They said we should switch them off but there was no chance. I watched the clock every minute and I cherished Lillie. She had a cardiac arrest and was christened at her bedside. She made it through the cardiac arrest but, as she had been gone for more than five minutes, the doctors were convinced she would be left brain damaged. This was no concern to me, I wanted my Lillie no matter how she was.

We were asked again to turn the life support off and what colour coffin we would like and what we would dress her in for the funeral. I was absolutely outraged. My daughter to me was still alive and she was fighting and I knew she would make it through this. The doctors decided to lower the medicine to see if Lillie had a reaction and she did - the door banged and she jumped. She also reacted to me holding her hand; her grip was tightening.

Her progress was fantastic. We were called into a room where we spoke to plastic surgeons who then gave us the devastating news that Lillie would lose both her legs above the knee and her left arm above the elbow. We were distraught, but we would do anything if it meant keeping our little girl and helping to save her life.

She also had to have a colostomy bag and Hickman line, as the rash was so bad. It was, they said, the worst they had seen in 15 years. One nurse lifted the foil blanket that was keeping Lillie warm and she broke into tears."

My heart was in my mouth every minute

“Lillie underwent her amputations on the 21st January 2010 and was in theatre for eight solid hours. I could not settle; it was horrible. My heart was in my mouth every minute Lillie was in there. When she came back from theatre onto intensive care we never once lifted the blanket, we just wanted to see her beautiful face – that was all that mattered. The days went by and Lillie got stronger and stronger.

Then we were transferred onto a ward which was the plastic and burns ward, where they would take over her care for the next three months. Lillie underwent 16 operations, including skin grafts. A feeding tube was fitted as her stomach had shrunk so much and she couldn’t tolerate any milk or water. She lost her sucking reflex with being on a ventilator for so long but she had the tube removed once her body tolerated food and special dietary milk. She eventually had her colostomy bag removed once the wounds had healed.

It was a long horrific journey; one I would never wish upon my worst enemy - a real living nightmare.

We came home on the 21st April 2010. We never thought we would see Lillie sit up, crawl or do half the things she does today. She is a bright little girl with no brain damage. She is very healthy and is now starting to walk a little in her prosthetic legs. She has the most beautiful smile and we are so very proud to call her our daughter - she is an inspiration to us and never ceases to amaze me or my family and friends. She goes to mainstream school and has a wonderful bunch of friends who look after her and help her although she is very independent and has a diva attitude. She loves My little pony and going to school, where the teachers absolutely adore her.

It’s taken a long time for us to come to terms with the tragedy. We have been through experiences you never get over but with something like this you learn to cope the better because of it. Lillie will need further operations as she has scars that get tight and need to be released and further skin grafts as she grows.”

Meningitis Now has been in touch and provided support for the family since Lillie Mai became ill. We’ve funded specialist toys and are looking at the possibility of funding swimming lessons.