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Olivia W's story

29th March 2016

Olivia had numerous health issues from a very early age, including croup, bronchitis and chest infections, all severe enough to be admitted to hospital. But when she suddenly became lifeless and unresponsive mum Demi, from Barnsley, knew something was seriously wrong. She tells their story here

Olivia W's story

“One evening in January 2011, when Olivia had been bathed and was enjoying a biscuit in her walker, she just suddenly became lifeless and unresponsive.

My initial thought was that she had choked on the biscuit.

“I rushed to check her mouth but the biscuit was whole and her mouth was empty. I immediately rang 999. Paramedics came and rushed her through to A and E. At the hospital she was rushed straight up to the children's ward.

“On the approach to the ward we were met by doctors and nurses who were switching the lights off. This was confusing at the time but I had other things to think about. As we were seated in a bay and Olivia was placed in a cot beside me the doctors asked me to step aside to talk. I did so and they asked if I'd sign a consent form for a lumbar puncture.

“I went into a panic as I asked them ‘why?’ They reassured me that Olivia was in the best place and that she could have developed the illness meningitis and that they needed to do this to check. So, I agreed. I went into the treatment room with Olivia for this but quickly left, as being a mother you could not sit and watch it being done.

Told not to expect good news

“Within ten minutes of having it done a doctor came and saw me and explained that the results were not back yet but not to expect good news, as Olivia’s spinal fluid was like cream and was badly infected.

“A further ten minutes passed and she came back with the results confirmed - Olivia had meningitis and her white platelets were in their thousands. It’s something the doctor had never witnessed in her career but they were still running tests to see what type of meningitis she had and to find the best treatment.

“As the days passed there was little hope coming our way. Olivia had a rare type of meningitis and they could no longer help her at that hospital but needed a professional who dealt with these cases. Olivia was just the second person to have ever developed this strain, so hope was fading fast.

“We were transferred to Sheffield Children's Hospital, where we were greeted by many doctors. It was around 9pm when we arrived but they had waited most of the day. We arrived a little late as we needed consent forms to change the pipeline and so on, but when we arrived they tried to make me feel at ease. Being far from home and with your little girl so ill I was far from ease.

Not a birthmark

“They took Olivia for an MRI scan and to fit a long line in to her heart for treatment. Around 12 that night a doctor came to ask me ‘what is that on her back?’ I said it was a birthmark. A doctor did check on this the day I was discharged from hospital with her. But the new doctor told me ‘this is wrong, this is the reason Olivia is here.’

“I felt like my world was pulled apart, knowing she has had this since she was born and knowing a doctor had looked at it and said it was a birthmark.

“The doctors at Sheffield confirmed this as a dermal sinus but informed me of how rare this is. They said it will be a long road to recovery, but that we will get her there, however many hours, days, weeks and months it would take.

“Olivia took around 18 different antibiotics. One morning her eyes were half open and it was like Christmas morning - the best feeling in the world. Then, as she started picking up, she could have her first operation on her back to remove the dermal sinus.

Excited to see her face

“She was down around eight hours and it felt like a lifetime, but the moment the doctors called to say she was in recovery I was so excited to see her little face. As we approached the recovery room we were told Olivia had taken a bad turn, but was back on track. After an hour the doctors informed us that the operation didn't go as they wanted it to and that the dermal sinus was actually attached to Olivia’s spinal cord. To even touch it could paralyse her, but they did as they saw she was fit and she did well in her recovery afterwards.

“She was allowed to go home the following week, the 1st May, as her first birthday was the 2nd May. I was just happy to have her home.

“She went for a check-up MRI at Sheffield two weeks later to see that she was all okay and we got a call two days after this to come in and to go straight to the ward. I assumed this was normal but I was told to wait in the treatment room with Olivia and seconds after arriving the treatment room was full of doctors.

“I didn't know what was going on. A doctor then checked Olivia all over, did all her reflex tests on her legs and said that's correct. When I asked what was going on he said the dermal sinus had refilled and was crushing Olivia’s spinal cord. That's why she had no movement in her legs.

“I just thought she was behind from being in hospital for such a long time and that's why she had not started crawling.

Risk she could be paralysed

“The next morning Olivia was back in theatre for her second operation. This one went better than the first, but the risk was still that she could be paralysed. Two hours after her operation she was sitting up and down and I was over the moon. But because she had had a spinal operation she needed to be flat for 48 hours.

“It wasn't too bad when the pain relief kicked in, bless her, and a couple of weeks passed and we were allowed home. She has regular MRI appointments and ENT appointments for her hearing and paediatric and neuroscience appointments still to this day.

“Olivia is now five years old and when she became ill she was only six months old. It was an illness that lasted months but will live with us for a lifetime. Please, if you are ever unsure of any birthmarks, have them fully looked into. It is not always about a rash.

“As you will know from Olivia’s story, she is one of the bravest girls I’ve ever met. I could not give her enough credit for what she has been through. She is my rock and my world and if reading Olivia’s story helps others then I am grateful for that.”