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Aleisha's story

15th September 2016

In 2011 Clarissa and Andy's daughter Aleisha contracted pneumococcal meningitis at 13-weeks-old, changing all their lives. As Clarissa puts it, ‘The unknown was about to hit us.’ She tells their story here

Aleisha's story

“It was 24 January - the start of our nightmare.

Aleisha had a bad night and was up quite a lot. I didn't think anything of it, other than she was probably teething or had reflux. We had been to the breast feeding clinic that morning, where she seemed very sleepy and slept most of the time we were at the group.

"A friend of mine mentioned that she had slept though the session and this didn't seem like her, but I was still putting it down to just a bad night’s sleep that had taken its toll. I remember she would occasionally be inconsolable on and off throughout the day, but didn’t think any more of it than she was tired; she didn’t seem ill.

“Aleisha was still on and off sleepy and getting worse throughout the next day. She was sick after her feeds and had a temperature of 38. I thought it was just a bug. Towards the end of the day I called the doctors and asked to be seen. They said to us they were about to close and that I would have to call the out of hours doctors at 6.30pm. An appointment was eventually made for 10.45pm that evening. At the time we had no car, so I asked a friend of mine if she would take us to the out of hours. Aleisha's temperature was now hitting 39.1c and she had very glassy eyes.

“At the surgery Aleisha was very sick and restless. Her soft spot was raised and pulsing. There was no extra concern to get her in and seen sooner, despite her age. After several checks, which included the doctor putting a gloved finger in her mouth to see if she would still suck, he said it was a viral infection. He said to give her calpol and see if her temperature comes down and to take her to the family doctor in the morning to get a wee sample taken.

Screaming and being sick

“At 1am I called the out of hours back. Aleisha’s temperature was still very high and she was screaming and still being sick. We again were told that we would get a call back. By 3am we still had not had a call but Aleisha had finally settled. We had been told a number of times to get some sleep when we could. This was probably the last bit of sleep we actually had for the next six weeks. I cancelled the call back from the doctors, explaining that she has settled and I had a bad night before and that we needed to get some sleep whilst we could.

“The next day we were woken by Aleisha crying. Her cry was completely strange, like a wailing. It’s very hard to explain and I knew it wasn't right, but didn't know why. I called the out of hours again and the lady who answered was the same lady who I cancelled the call with and she remembered us. She said a doctor would call us back. At 8.30am we got a phone call back, again no rush at all. The doctor said to bring her back down, but we had the problem of no car, so, as our doctors were opening, I said I’d call them and get an urgent appointment there.

“We saw a doctor at our surgery, who did the same sort of checks as the previous doctor and came up with the same viral diagnosis. I was brought up to trust doctors, so I did and went away. Aleisha carried on getting worse, becoming more and more sleepy. By the evening her temperature was still going up - this time 39.5 - so we made the decision to go to A&E and Aleisha’s uncle drove us there.

“We didn't have to wait too long before we were seen by triage, who took us to the back and called for the doctor. When we mentioned she had had no wet nappies for a while we were taken up to the ward and seen by one of the consultants. Aleisha was then admitted to the ward. The consultant wanted to put a line into her arm for antibiotics.

Things went from bad to worse

“This was when things went from bad to worse. Aleisha had a big seizure; I have never seen anything like it in my life. I just scooped her into my arms and held her to me saying ‘you’ll be okay’ over and over again. The consultant was very calm and talked to me, asking me to lay her back down on the bed. From then on things just went fuzzy, a big blur, with doctors and nurses rushing around. We were taken to the high dependency unit and after a while the doctors came around and talked to us, explaining that they are doing tests to see what was going on with Aleisha. The possibility of meningitis was then mentioned, although they didn't know which one.

“Aleisha was on hourly obs and one-to-one care from the moment she had the seizure. That was the last time we saw her awake. The bloods came back and we were then told it was bacterial meningitis. She was taken for a CT scan, which showed swelling, but they could not say what level of damage had been done. We were both allowed to stay with her. She was stable but critical. The hours just seemed to pass by without us noticing whilst we sat and watched our baby, just lying there sleeping.

“She had a good night and stayed stable and we all thought she was looking better and seemed to be making some slow recovery. She was still being regularly checked as she hadn't come around. The doctors were very happy to share what was going on and what the plans were for Aleisha, which helped us to understand what was going on. Throughout the day Aleisha's vitals stayed stable and she had some visitors; both grandparents and her older sister came to see her. Nanny brought some baby vests to freshen her up.

Sat by her bedside and waited

“Both me and Aleisha's daddy took it in turns to sleep, so we were with her all the time. Throughout the day we sat by Aleisha's bedside and waited.

“The next morning started well after another stable night. Aleisha had gone slightly pale overnight and slightly yellow in colour, but everything seemed as good as it could be. With all seeming okay and Aleisha being stable, doctors were considering taking her out of the HDU. Her colour though was starting to be a bit of a concern. The nurse took some bloods to see if it would show what was going on - they suspected it was kidney related. Aleisha had dangerously low haemoglobin levels and was given transfusions.

“After not being able to hold her for a few days, or even touch her, they allowed me to hold her. But the moment I had got hold of her, her breathing started to go funny. It was very shallow. The decision was then taken to blue light her to Evelina London Children's Hospital.

“Seeing Aleisha being sedated and incubated was horrible. I couldn't believe what was happening. I was scared and didn't know what to do - I thought I was going to lose her. Everything was moving so fast; nurses were trying to calm us down and explain what was happening and tell us what to expect. Nothing though can prepare you for what was happening and seeing your baby fight for her life. I remember them bringing in the stretcher and transferring her over. Everything went into a blur, walking to the ambulance, seeing them doing a lot of checks. I felt alone, no one was talking or explaining anything, and the trip to the hospital felt very long.

Hours turned into days

“From then on hours turned into days. Every bed in picu paediatric intensive care unit had their own nurse doing one-to-one care on extremely sick children. Over the time spent in picu Aleisha had uncontrollable seizures, blood transfusions, her heart rate dropped and picked up, her blood pressure was up and down and wasn't maintaining very well.

“Seeing so many tubes coming out of your baby was really horrible. Seeing iv lines in places you wouldn't think they would put them, like around her head. It seemed like forever that Aleisha was sedated. Whilst Aleisha was in picu she was taken for CT and MRI scans. They talked us though what the results were and neurology explained to us to expect that Aleisha would be severely disabled, meaning that she wouldn't sit, walk or speak. This was devastating. Many days I asked ‘will she pull though?’ The answer always came back the same, ‘we don't know.’

“On 2 February Aleisha's ventilation was turned down and she was starting to breathe for herself. This was a big relief as there was a chance that she wouldn't have been able to. Aleisha's breathing tube was taken away on 3 February, but she had a few seizures overnight, as they were still working on her medication. The next few days were up and down, with her still having seizures and her heart rate up and down. Aleisha was starting to tolerate feeds though a tube.

“Eventually she was moved to the ward where she was still monitored closely. More tests were carried out and further CT and MRI scans. These showed fluid collecting on the brain, which needed to be drained, meaning a transfer to Kings College Hospital. Even though I know Aleisha was on the mend seeing her put in the transport pod was still scary.

She opened her eyes and smiled

“We got to Kings College Hospital and it was pretty much fast forward from then on. Aleisha was taken to surgery to drain the fluid on her brain. Time went so slowly; it felt like she was there for hours while we waited to be told we could go to recovery and see her. When we did, she looked so pale and so small it was horrible. I followed as they took her back to the room we were in and waited for her to wake up. What a relief when she opened her eyes and what made it better was that she smiled at me. I really didn't want to put her down; I just wanted to hold her close to me.

“We spent a few days at Kings and we got the news that we were able to go back to Medway Hospital – yes, we were going home. I thought our nightmare was over; little did I know that it wasn't! Aleisha still had a lot of hard work and recovery to do and lots of physiotherapy - anything that could help her get as well as she could.

“When we were back at Medway Hospital we were talked though what was going to happen next. Antibiotics would carry on though the artery line in her groin and we saw the physiotherapist, who gave Aleisha some exercises. We were allowed out of the hospital for a little while during the day, so we went to a toddler group, thinking life was starting to get back to normal. It did feel strange being home after three months in hospital.

“Going though meningitis as a parent is hard; watching your baby fighting for her life is the biggest nightmare any parent faces. Little did we know that Aleisha's fight wasn't over. We now have to deal with the after-effects of this horrible illness. We are now five years on and over the years Aleisha has had many seizures; some short, some extremely long, both very scary. But she fights through it.

“Aleisha has been left with profound deafness in her left ear and mild hearing lost in her right ear; cerebral palsy (four limb motor disorder); unsteady gait; status epilepsy; receptive and expressive delay disorder (says approx 20 words); moderate learning disabilities (development is approx 18 – 23 months); ADHD difficult behaviour; slow swallow; and brain damage.”

Aleisha today

Aleisha's story