Meningitis in your words

Maisie Eleanor Graham's story

  • Location: England
  • Categories: Meningococcal
  • Age: Toddler 1-3
  • Relationship: Parent
  • Outcome: Bereavement
Maisie Eleanor Graham

Maisie, our only child, was perfect in every way. Her charisma, charm and kindness was so magnetic, rarely a day went by where a stranger didn’t pass comment on her. We were so proud of Maisie, she was a ‘dream child’, I couldn’t begin to recount how many times I have said those words.

Maisie had her second birthday shortly before we headed to St Lucia for a family holiday. We had an amazing time together. The day of our departure, I said to my husband, “haven’t we got the perfect family”. That day has changed our lives forever.

On our flight home we suffered very bad turbulence and Maisie was sick shortly after. She was sick again whilst we collected our luggage. Immediately after we arrived home on May 14th 2011 at 2.30pm, we gave Maisie Calbrofen as she felt hot, and checked her temperature, it was 40°. We rang NHS Direct where they asked many questions, but Maisie responded positively to them all. Her temperature had reduced to 38° by the end of the conversation so they made us an appointment at our local hospital for 4.30pm, more than an hour later, so we weren’t too concerned and put Maisie to bed for a nap. We also decided to have a quick nap as we had been travelling for nearly 21 hours. We took Maisie’s temperature before heading to bed, it was 37.1°, nothing to worry about, she was just a little travel sick and exhausted from our travelling.

It was 4.30pm and Maisie woke us shouting “mama”. She had been sick and I could smell she needed her nappy changed. Immediately on leaving her dark nursery I panicked, she had a slight bluish colour to her skin and seemed a little floppy and was breathing quite heavily. We immediately rang an ambulance. A paramedic arrived, other than a slight bluish colour to her lips he wasn’t overly concerned and said it was probably exhaustion. The ambulance arrived minutes later and took us to hospital where a number of doctors and nurses were waiting for us.

The hospital began treating Maisie for dehydration, and gave her antibiotics to target any infection. I lay with Maisie singing her favourite songs, counting and talking about all the things she did on holiday, desperate to keep her awake as she had started dozing in and out of consciousness. My husband was breaking down at the sight of what was going on but I had to stay strong for Maisie. She was fighting the oxygen mask, resisting the drips that were being attached to her. She said “I want a drink”, in her cute little voice. We didn’t know these would be her last words. Maisie eventually fell asleep, we never saw her awake again.

"We let Maisie pass away peacefully in our arms"

The doctors worked to constantly stabilise her blood pressure and breathing, and after a few hours the doctors became concerned that Maisie wasn’t reacting to the medication, and was beginning to deteriorate. They never once suspected meningitis, but didn’t know what they were up against. Consultants of all departments were called in and decided they would need to take over Maisie’s breathing. They contacted the PICU at Newcastle RVI. We were moved to a side room, it was now 9pm.

We were numb with worry, every time a nurse entered the room, we panicked at any news they were about to tell us. A consultant came in to see us, he said they had lost Maisie for a few minutes while trying to take over her breathing but had managed to revive her, and they had spoken with PICU who were on their way, but it was not looking good. They still didn’t know what they were up against. I begged them to help her, I knew they were trying their best but I couldn’t lose Maisie, she was my world.

The PICU arrived and spent more than an hour with Maisie before coming to see us. They informed us that upon arriving at the hospital they didn’t think they would leave the hospital with Maisie but that she was proving to be a fighter and they had managed to stabilise her, and thought they had a chance of making the transfer to Newcastle RVI. The consultant advised us that Maisie might not make the transfer and also had concerns over how her eyes had dilated and potential brain damage, but said he would deal with that later. I didn’t care, so long as Maisie survived and was with us, that’s all that mattered. I knew she was strong and felt positive she would make it up there. Before she left we said our goodbyes, told her we loved her and to be strong and we would see her soon.

The journey to Newcastle RVI was agonising, we had to travel in a hospital taxi, whilst Maisie was transferred at top speed in a lifeline ambulance. Seeing that ambulance pass us by, siren going, is an image I’ll never forget. Maisie made it to Newcastle RVI and we were ushered to a private room whilst they hooked her up to all sorts of equipment. The consultant said to prepare for the worst as Maisie was extremely sick. They still didn’t know what they were up against but whatever it was it was one step ahead of them the whole time, those were the consultant’s words.

We were taken to the room Maisie was in and told they wanted us close by in case anything happened. I couldn’t believe all the tubes hooked up to my beautiful daughter, she looked swollen and very sick. The consultant said there was nothing more they could do and that it was now up to Maisie. Oh how she fought! We sang to her, talked about happy memories, and how much we loved and needed her, all the while urging her to stay with us. It was a surreal time, things like this don’t happen to people like us, I’d only ever read about stories like this.

After a few hours the consultant said he had one more thing he wished to try, a type of dialysis machine, which would remove Maisie’s blood from her body, cleanse it and return it. He said he didn’t have high hopes as even healthy people don’t take to the machine, let alone someone so severely poorly, but that she had fought this long and deserved the chance. We sat outside the room while the surgery was performed, fortunately, she took to the machine. She had fought this long and survived so much there was no going back. I remember seeing ‘get well soon’ balloons in the ward, and envisioned returning the next day with some for Maisie.

About 40 minutes into the machine working, Maisie’s heart began to slow down, she was dying, there was nothing more that could be done. The consultant said he could resuscitate her if we wanted, but he didn’t think it would do any good except prolong the situation. We took the decision to turn off the machines and detach all the tubes except the morphine, and let Maisie pass away peacefully in our arms. It still didn’t feel real saying our final goodbyes to our gorgeous daughter. It was heartbreaking. Maisie had been happy and content on our last day, playing on the beach, swimming in the pool and pretending to be a pirate on our flight home. Yet in a little over 12 hours of arriving home, she was gone. We returned home to a hallway full of half open luggage, piles of toys and clothes bursting out, a reminder of our amazing holiday, which felt like a lifetime ago. Maisie’s second birthday balloons were still floating in our living room. It is impossible to describe how that felt.

It wasn’t until the following day that the consultant was able to confirm Maisie had passed away as a result of contracting meningococcal septicaemia, the strain which usually shows the rash. In Maisie’s case, it hadn’t.

It has now been nine months since we lost our little angel; our lives and home, feel empty without her. Life will never be the same. We love and miss you baby girl. xx

Alyson Graham
February 2012