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Clara's story

3rd November 2017

Our 2017 Christmas Card ‘Clara and Friends’ is a loving tribute to a special young girl, who lives on in the hearts of her family and friends. Mum Claire tells their sad story here

Clara's story

“My heart is truly broken. After surviving a life-threatening brain tumour I thought nothing can be any worse.

I felt overwhelmed with how excited I was to face every day knowing I would have the time I’d longed for to watch my children grow, especially Clara, who was only 18 weeks old when I was diagnosed.

“She was the strength I needed to face my fears and the light at the end of my tunnel.

“On Sunday 3 October Clara had a temperature and a runny nose. We put it down to a new tooth we'd counted on Saturday. Through the night she woke but settled after a bottle and some Calpol. I’d checked her temperature and it was 37.69. I even googled it to make sure she was okay.

“She woke as normal and had her breakfast. It was my first day at work with my boss, so I was a little anxious that I couldn't call in sick over a new tooth. I'll regret this for the rest of my life.

With my mum

“The hours that passed were like any other. Clara was with my mum at home. I’d given her some Calpol and told my mum to ring if she was concerned. She never called and didn't answer when I tried her through the day. I just imagined she was busy looking after a very energetic 10 month old, who was up and walking around furniture, crawling into every space she could find, and generally being great fun.

“At 4pm when I saw my mum sitting outside my office I thought nothing other than she's earlier than usual. I nipped out to tell her I had a couple of things to finish off and she replied "I think we should get Clara to the doctors - she was sick earlier and seems a little worse since we set off to pick you up."

“I immediately called my GP's practice and asked to be seen straight away. By the time we drove there Clara was looking vacant and flushed. I picked her up out of her car seat and she was sick with such force I thought I'd been hit by a wave.

Ran into the practice

“I ran into the practice and paced anxiously for 20 minutes until a lady GP I hadn't met before greeted us. I was hysterical. I’d never seen my daughter look so ill. I explained she had a temperature, a couple of runny nappies and had been sick. She confirmed it was gastroenteritis, but thought it best to get Clara to hospital for a check-up and possible fluids as she may be dehydrated after being so sick.

“She reassured me she would be fine and I was worrying unnecessarily because of my history!

“We arrived at hospital within 30 minutes at around 5.30 and had nurses waiting to look after her, checking her weight and temperature. Again, we were reassured she would be fine.

“Throughout the night Clara was being sick every time she took any liquids. They decided to give her a drip and take some bloods at 1am. The blood results were back at 4am, showing she had an infection, but they already knew that or so they thought.

“Clara had a chest x-ray at 8am, followed by a check up with a senior paediatrician at 9.30am who decided she no longer needed the drip and wouldn’t get better if we didn't allow her to take fluids herself. I agreed (I didn't have much choice given their expertise).

Watched her get worse

“In the following hours I watched Clara get worse and called repeatedly for nurses and doctors to check on her. The senior paediatrician returned around 12.30 to say again, "She isn't that bad". I asked what else it could possibly be. I could see them checking her for a rash, her nappy area, her back. By this point she could hardly lift her neck and when you sat her up she threw her head back and arched her back.

“I was becoming hysterical inside, and so asked, "What would you do if you suspected meningitis?" He replied "a lumbar puncture and blood test". "fine" I said, "then please will you do that so at least we can rule it out".

“He agreed and said, "Then, when her results come back clear as I expect them to, will you allow her to get better in her own time?" It took an hour to wait for the cream to anaesthetise her back to take effect. I carried her along and sat with her (against all advice but there was no way I was leaving my daughter to do this alone). The nurse tried to take her but realised there was no way I was waiting outside because "you might find it upsetting to watch". I'd find it a lot harder thinking she was with strangers and frightened.

Feared the worst

“I will never forget her cry when they curved her back. I wept instantly and turned to the nurse helping me to hold her and said, "That’s that cry" – the high-pitched one every parent dreads. "No no, she's fine – look her fluid it's clear, that’s a great sign". Every step of the way I feared the worst.

“I carried her very carefully back to her bed and laid her down. Within minutes her breath started to fade and her breathing became irregular. The alarms were sounding and the two doctors who performed her lumbar puncture stood there helpless, not knowing how to respond.

“They called a further senior paediatrician who came and took over. Within seconds of seeing her he confirmed my worst fears. "Your daughter is very poorly, I believe she has meningitis." Clara was rushed to an emergency room and doctors and nurses came from everywhere to test, plug, push buttons.

“I’ve never been so sick in my life - the thought that I’d been sitting there for 24 hours telling them I thought she was really poorly seemed to rip apart every ounce of faith I had in them.

“I couldn't believe what they were saying and naively I asked "will she lose her legs or arms or her hands?" Clara had the most beautiful long fingers. The doctor just looked at me and replied, "She's very sick." I wanted to scream "I know that, it’s what I’ve been telling you all for 24 hours!"

Waited helplessly for news

“In the minutes that followed Clara was taken for a CT scan. We waited helplessly for news. One doctor came to tell us her chances of survival were only 80%. "That’s great" I said. It's all I had. I prayed and I prayed. The results came back from the CT and a transfer team arrived to take us to a hospital with an intensive care bed.

“All the way to the other hospital I cried and kept repeating myself. "Has she got a chance, please tell me she has a chance". The doctor in the ambulance with me replied, "We wouldn't be moving Clara if there wasn't a chance, but it is small".

“We arrived at the intensive care ward and I was led to a family room, where the rest of my family were waiting. For an hour I paced, waiting and popping my head around the door to be told, "You need to let them transfer her." Then we were called to see her. The nurses wouldn't answer my questions, they just told me to wait for the doctor.

“I waited another five minutes or so and he appeared, a kind and modern looking guy. He asked to see us in a room at the side of Clara's and then he asked, "How much do you know?" I replied "I heard them say there is no change, so I guess she is no worse or any better, but we're here now so what can you do?" He paused and replied, "There is no change Claire, Clara is brain dead".

Cut through my heart

“Those words cut through my heart like a bolt of lightning. (I fight with my tears now to type this but I need you all to know)

“They kept Clara on ventilators and further monitors overnight while I held her. They needed her sedation to wear off so they could confirm she was really gone and not just appearing so because of the drugs. I held her all night, only allowing my mother to take over for a short while, as much as I could bear. Her father Stefan walked the corridors of the hospital most of the night returning often to touch her, kiss her and cry with me.

“I prayed with the priest all night. I needed to ask for a miracle to allow Clara to have the life she so deserved and enjoyed. Her body fought all night against the destruction of meningitis but though brave in heart and spirit she wasn't strong enough for the evil consuming her.

“After my third opinion later that morning, a second will never be enough for any mother, after watching her little body fight for 14 hours, I was given no option other than to hold her as tight as I could while we took her ventilator away.

Continued to fight

“Clara continued to fight in my arms until her very last heartbeat, the moment I wished mine would stop too.

“The room was filled with her family and friends, all there to give her as much love and guidance as possible. Her older brother Alex held me as I held her. For 14 I’m amazed by his courage and dignity. He’s been a rock to all of us, but I see how hurt he is when I see him watching over her toys, her photos, or the sound of her name.

“Due to the wonderful help of Martin’s House in Boston Spa we were able to bring Clara home with us and look after her in her own room until we laid her to rest, the second hardest moment of our lives.

“Clara has left a hole in so many people’s hearts. I watch her older brother pine for her, her father exhaust himself daily to take away the physical pain you’re left with when you lose a child so loved.

“I am currently trying to raise as much awareness as I can. Meningitis is a deadly, rapid, devastating disease, please, please don't wait for the rash, it's one of the last symptoms to appear.”