Meningitis in your words

Khiara Grigg's story

  • Location: England
  • Categories: Meningococcal
  • Age: Toddler 1-3
  • Relationship: Parent
  • Outcome: Full recovery
Khiara Grigg

Hi I would like to share my story of my baby girl who fought meningococcal septicaemia B. It was this year, Monday January the 24th 2011, when ahead of me was to be the most unbearable journey for me as a mother watching this terrible disease take over my precious little girl.

On the Monday Khiara, 13 months old, had been fine, playing as she usually does, eating, but became grisly towards the evening. She fell asleep at 7pm and I put her in her cot.

At around 9.20pm I went to check on her. She had an extremely high temperature. I picked her up, took her clothes off to cool her down and gave her Calpol. She then soon vomited.

I decided to take her to A&E around 10pm to get her checked out. After a while we were seen by the nurse. There seemed to be no concern, we were told there was a three hour wait.  Khiara was getting upset and distressed so we took her home. All through the night she had a constant temperature, I gave her Calpol every four hours.

In the morning she began to vomit again. She was not herself, I knew something was wrong. It was then I noticed a small purple spot on her back and under her arm. I rushed to get a glass, it was not disappearing. I began to panic. I rushed her to A&E again. We saw the nurse, she had symptoms of high temperature, vomiting and a non blanching rash. There seemed to be no concern from the nurse who put her sixth in line to be seen and sent us out to wait. I thought this was a disgrace.

"My daughter was critically ill. My world fell apart."

She was deteriorating, became very sleepy and vomiting.  She was almost yellow in colour. I cried out, ‘we need to see a doctor now’. A paediatric nurse came down and took us into a room. A doctor came in, I asked her could it be meningitis, she said ‘no not likely’. You put faith in the doctor and believe they are right, but I knew deep down something was terribly wrong.

Our treatment in A&E was disgraceful, children with symptoms that Khiara had should have been priority and seen straight away, this should not be happening. Every second counts with the disease she had.

We were transferred up to the paediatric unit, where at this stage she was becoming unresponsive and the rash had spread. A nurse picked her up, took her to a room and a doctor come in almost like she was sent from God, then before I knew it I was sent out the room, people rushing in everywhere. My nightmare became worse. I was pacing up and down the corridor.

The doctor came and took me into a room, Khiara had meningococcal septicaemia group B. The doctor told me it can kill in hours, organs can fail, she could lose limbs, her hearing can be affected. My daughter was critically ill. My world fell apart. I cried to the doctor ‘I want to die, I can’t do this, why my precious little girl?’.

I just didn’t know what to do. They came back and told us she had to be transferred to St Mary’s PICU. CATS (Children Acute Transport Service) came and transported her. The CATS team were fantastic, they talked me through everything trying to reassure me. She arrived there Tuesday, early evening.

I was struggling to cope and finding it unbearable. I was in complete shock. We were sent in the family room until the consultant Dr de Munter and the team came in to talk to us. I found it hard to listen, I didn’t want to hear. I couldn’t believe it was happening. Khiara was stabilised, she was on a ventilator, heavily sedated and on numerous drugs. Every second of every day was excruciating for me. She was in the best place, St Mary’s PICU is renowned worldwide for its specialism in meningitis.

The first night she was stable and responding to treatment. I could not go and see her straight away, the thought of seeing her like that was unbearable. I managed to go in first with my eyes closed and hold her hand. The nurse explained all the tubes and what everything was. I gradually opened my eyes to look at my precious baby. All the nurses and staff are lovely people. They are special people who do an amazing job. I felt so helpless. She remained stable, she was even trying to fight the sedation and moving her arms to grab the tube.

On the Monday she was extubated – the tube was taken out. She had to have an oxygen mask straight away then she was fitted with oxygen tubes and had a nebuliser. She was still very heavily sedated, just staring and rolling her eyes which I found heartbreaking, I wanted her back to normal. She was very jittery due to withdrawing from the large doses of morphine and sedation, so they had to give her small doses and withdraw her slowly. I got to hold my little girl for the first time and hear her make a little cry. My heart was filled with emotion.

On the Tuesday we were referred back to our local hospital, which frightened me after our treatment in A&E.

The next part of our journey was her recovery. For the next few days she just laid there lifeless, still under the influence of the heavy sedation. She was almost like a newborn baby. She was fed through a tube and on oxygen for the first day. She was very jumpy and grisly due to withdrawing from the drugs. Every day she gradually improved and we could see glimpses of our little girl coming back. She began to gain more strength, she smiled, laughed, cried. She put her hand out to toys. Towards the end she began to sit up, pull herself up, sit and crawl, stand. I can’t express how immensely happy and blessed I felt. My baby girl was back. The feeding tube came out she was gradually re introduced on solids and the bottle. She was discharged after seven days in total. She is walking now better than she was before and doing fantastic.

Meningococcal septicaemia is a seriously deadly illness, but thanks to the outstanding knowledge and care of the PICU at St Mary's and the CATS team my daughter is doing great. My immense thanks to you forever. Where would we be without you?  I thank God every day.

We can fight meningitis, but too often it is misdiagnosed and not recognised, every second counts with this disease, it needs to be caught immediately. If my daughter was left any longer in A&E the outcome may have been very different. Babies and children should be seen immediately. There needs to be separate paediatric A&E in all hospitals.

Carli Grigg
April 2011