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Lily's story

16th February 2015

It was just an ordinary November day with a four-week-old baby for Lily and her mother Billie, but all that was to change dramatically and very quickly when Lily was rushed to hospital with an unusual cry and a burning temperature.

Lily's story

But their dramatic story has a happy ending, as Billie recounts here.

“Wednesday 25th November 2009 was just like any other ordinary day with a four-week-old baby. My day consisted of sterilising, changing nappies, feeding, taking tons of photos of Lily and a little bit of housework, nothing too exciting.That evening, as usual, I gave Lily her bath and a bottle at 7pm. She would always then wake up every four hours, like clockwork. As 11pm came around she was given another bottle, before being laid back down in her Moses basket beside my bed.

The next time she woke me, she seemed a little strange. This was at about 4am and I placed her in my bed, next to her dad, Lee, whilst I went downstairs to make her bottle. When I came back up, she was a little upset, so I took her and began to feed her. This time though she wasn’t interested. She refused her bottle of milk completely and just gave an unusual cry."

Couldn’t understand what was wrong

“I decided to lay down with Lily placed on my chest. Listening to my heart beat always seemed to settle her. But not this time. I couldn’t understand what was wrong with her. I got up and changed her, thinking she may be a little wet and she doesn’t like it. Once she was changed, I sat up and gave her a cuddle as she was still letting out an unusual whimper.

The back of her head was laying in the crease of my arm. I asked Lee to feel her forehead as her temperature seemed to be increasing rapidly and her head felt like it was burning my arm. He said she felt fine, which put my mind at ease. I started to think I was over worrying.

Twenty minutes later, as her dad was leaving for work, he suggested that if she was the same in a few hours then maybe take her to the doctors. I replied that I wouldn’t be taking her to the doctors, I’d be taking her to the hospital."

Knew I needed to take her to hospital

“Lee had only been gone for five minutes when I had an overwhelming feeling hit my stomach. I didn’t know what was wrong with my baby but I knew I needed to take her to the hospital.

I was living with my sister at the time, so I asked her to hold Lily whilst I got changed. She started to ask me questions like ‘What’s wrong?’ but I just told her ‘I don’t know, I just need to get her checked out by a doctor’. I don’t think I have ever got changed so quickly. I grabbed a bottle and put it in her changing bag and took her from my sister. As I did, I still remember the words that came from my sister’s mouth. She said: ‘I know what you mean, she definitely isn’t right’.

The journey to the hospital seemed to settle Lily as she was sound asleep by the time I arrived. I took her out of her car chair and walked to the A&E department. Nobody was in the waiting area so I went straight up to the desk to check Lily in. The lady just looked at her through the glass and rushed us straight to the children’s section where a doctor came to check on her. I explained what she had been like. He didn’t seem too concerned and suggested it may be bronchitis."

I felt like a bad mother

“I called Lee and told him that I’d brought Lily to the hospital and asked him to leave work and join us. I started to cry as I felt like a bad mother. I thought she had bronchitis because I hadn’t wrapped her up enough. When the doctor came back round, he told me he was going to place a cannula in Lily’s hand so he could start her on antibiotics straight away. As he put the needle in, Lily lay still in my arms; she didn’t flinch, she was unconscious.

I was then told that Lily was being taken down to resus unit. They kept telling me not to worry; they just wanted to monitor her properly. They told me not to tell her dad they had moved her as he may begin to drive erratically to get here quicker. So I didn’t. Everything seemed to be happening so quickly from then on. I was sitting on a plastic chair and Lily was placed in my arms, wearing nothing but a nappy and surrounded by bleeping machines, monitoring her heart. On her dad’s arrival, I just remember him staring at us, the colour instantly draining from his face. He came over to give us a cuddle, desperately trying to hold back the tears.

Our room was soon swamped with doctors and nurses. We were told that they wanted to perform a lumbar puncture and advised us to leave the room whilst this was done. They then dropped the bombshell and said they suspected it may be meningitis. My heart sank."

Remembering Lily’s big smiles

“We went outside to get some fresh air and update family. When we went back in, we could hear Lily crying and they said it was a success and we would find out the results within 48 hours. We were then told that there weren’t any beds available on the children’s ward and Lily was being transferred to a hospital in Sidcup, Kent.

The following 24 hours went by so slowly. I just sat crying beside my daughter’s lifeless body, remembering the big smiles she was giving me just two days before.

Doctors soon entered the room and said that the bacteria from Lily’s lumbar puncture had grown a little and it was meningitis that she had, but we wouldn’t know the full strength until the following day. Another 24 hours went by in a blur and we were told that Lily had bacterial meningitis and septicaemia, but no rash. She contracted it through Group B Strep, an infection that was passed from me to her whilst she was being born. I felt numb. I blamed myself. I was her mother and my body had failed to protect her."

My baby is back

“Monday 30th November was the best morning I have ever woken up to. As I glanced over at my baby girl, she was lying in her cot wide awake and greeted me with the biggest smile she had ever given. I instantly jumped up and cried with happiness. My baby was back. I grabbed my phone and took a photo to send to family members.

On Tuesday 1st December, we were transferred back to Queens Hospital, where they continued to monitor Lily’s progress and give her regular IV antibiotics. The following day we had lots of visitors, so we were kept busy. Lily also watched Iggle Piggle for the first time on the bedside TV. She was mesmerised.

On Thursday 3rd December, things went from good to bad. Although Lily was improving, she still needed the IV antibiotics to keep her strong, but her cannula had stopped working and she needed it changed. Her dad went with her down to the treatment room. He came back just over an hour later but he didn’t have Lily with him. He said the doctors wanted to shave her head. I couldn’t understand why. When I got there, the doctors explained that Lily’s veins kept collapsing. They had attempted to cannulise her nine different times in the last hour and they had all failed.

The last option was to shave her head and place the cannula in a vein there. I told them as much as I didn’t want them to shave her head, she needed her antibiotics more, so there was no need for a discussion and I gave my permission for them to perform the procedure. It didn’t last long, as the following day, that vein also collapsed.

We had a little relaxing time before going back to the treatment room. We gave her a nice warm bath, which she always loved before being taken ill, and perhaps it helped with her veins as they managed to put a cannula in her foot on the first attempt."

The best news

“On Monday 7th December we were given the best news. Lily only needed her antibiotics every 24 hours, rather than every four. So, the doctors said she could come home as long as we brought her back for daily visits for the next few days.

By Thursday 10th December, Lily was discharged from the hospital. We were told that she may have learning difficulties or behaviour problems as she gets older and she would be monitored regularly. I was also told that Lily would not be here today if I hadn’t taken her to the hospital when I did.

Lily is now five years old and has no lasting effects from the meningitis. She is in full-time school and doing fantastically well. Her teachers have even said that she is actually more advanced than she should be for her age. As for the behaviour problems, although she can be a little monkey at times, what five year old isn’t?

One thing I do know for sure, I have one tough little lady on my hands!”