Khiara's story

24th January 2011

Carli will never forget the day her daughter Khiara fell ill with meningitis. Here she tells how the youngster fought for her life as the deadly bug took hold

Khiara

"It was Monday, January 24, 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.

"Khiara, then aged 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 vomited so I decided to take her to A and E at around 10pm to get her checked out.

"We arrived and after a while were seen by the nurse. There seemed to be no concern and we were told there was a three hour wait. She 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 and 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, which I pressed to her skin but it was not disappearing. I began to panic. I rushed her to A and E again."

Getting worse

"Khiara had symptoms of high temperature, vomiting and a non-blanching rash. We saw a nurse but there seemed to be no concern and she was put sixth in line to be seen and we were sent outside to wait. I thought this was a disgrace. By this stage, Khiara was deteriorating, becoming very sleepy and vomiting. She was almost yellow in colour.

"I cried out: "We need to see a doctor now!" A paediatric nurse come down and took us in a room. A doctor came in and I asked her whether it could it be meningitis but she said no, not likely. You put faith in a doctor and believe they are right, but I knew deep down that something was terribly wrong. Our treatment in A and E was disgraceful, children with symptoms that Khiara had should have been a priority and seen straightaway. This should not be happening. Every second counts with the disease she had.

"We were transferred to the paediatric unit, by which stage she was becoming unresponsive and the rash had spread. A nurse picked her up, took her to a room and a doctor came in almost like she was sent from God. Then, before I knew it, I was sent out of the room and people were rushing in from everywhere. My nightmare became worse. I was pacing up and down the corridor. The doctor came and took me into a room, where he told me Khiara had meningococcal septicaemia group B. The doctor told me it can kill in hours, the organs can fail, she could lose limbs or her hearing could 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."

Transferred to intensive care

"They came back and told us she had to be transferred to St Mary's Paediatric Intensive Care Unit. CATS (Children Acute Transport Service) came and transported her. The CATS team was fantastic, they talked me through everything and tried to reassure me. She arrived there on Tuesday, in the early evening. I was struggling to cope and finding it unbearable. I was in complete shock. We were sent to 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, put on a ventilator, heavily sedated and put on numerous drugs. Every second of every day was excruciating for me but I knew 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 straightaway. The thought of seeing her like that was unbearable. I managed to go in first with my eyes closed and hold her hand while 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 and was even trying to fight the sedation and moving her arms to grab the tube. On the Saturday they were hoping she would be ready to be excubated but initially she had too much fluid. Thankfully she was ready for the tubes to be taken out on the Monday. She had to have an oxygen mask straightaway to help her, 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 just 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 heard 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 and E.

"The next part of our journey was her recovery. For the next few days she just lay 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 reintroduced to solids and the bottle. She was discharged after seven days in total. She is walking now better than she was before and is doing fantastic.

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

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

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