Meningitis in your words

Jasvinder Bharj's story

Location: England
Categories: Pneumococcal
Age: Baby 0-1
Relationship: Child
Outcome: Bereavement

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Meningitis in your words
Jasvinder Bharj

It was Thursday 20th April 2006 and I was visiting my mum. My three sisters were there and Amrit was fine all day, playing happily. When it was time to go I remember my sister saying she thought Amrit was coming down with a cold as she had a little bit of a runny nose.

That night, Amrit slept as normal, waking as normal for her night feed.The following day, on her six month birthday, Amrit was very grizzly which was very unlike her. She had a fever and runny nose which I put down to a cold. I gave her the recommended dose of Nurofen and Calpol which kept her temperature down.

On Saturday, Amrit was burning up, her temperature was over 100 degrees and I couldn't bring it down with medication. Her hands and feet were warm as was the rest of her body. I called the out of hours doctor who asked me to take Amrit in.

At the hospital, after half an hour's wait, we were called in to see the doctor. She asked if anyone had taken Amrit's temperature and when I replied they hadn't, she put her hand on Amrit's forehead and said she seemed fine. I explained all the symptoms to the doctor; high fever, not feeding, lethargic. The doctor asked if Amrit had a rash to which I again replied "no". She took my word and no examination was carried out. I remember the doctor listening to Amrit's chest over her vest and concluding it was clear. When I explained I was concerned about dehydration because Amrit was not having any of my milk, the doctor felt Amrit's fontanelle and said it was slightly raised, which was a good sign, Amrit was not dehydrated. I later discovered that this was a sign of swelling around the brain. I still cannot believe how naïve I was, meningitis did not even cross my mind. The doctor then proceeded to draw the three parts of the skull for me; I'm still not sure why she did this. She sent me home saying Amrit had a virus and to continue giving her Nurofen and Calpol as well as liquid on a teaspoon. The consultation lasted 11 minutes.

We took Amrit home. I put her in her Moses basket in the living room and I remember Amrit reaching for the mobile above her. That was the last time I saw her do that. She slept for the rest of the day, waking for short periods of time. I wasn't too worried as I thought sleep would help her recover. How wrong I was.

Amrit's mother says: "That night I set my alarm clock for every two hours so I could monitor Amrit who was asleep in her crib next to my bed. I gave her Nurofen and Calpol and tried to give her liquid on a teaspoon throughout the night."

The next morning I woke around 10am, Amrit was still sleeping; I had transferred her into my bed early that morning. I left her to sleep and went downstairs to tend to my boys. I thought nothing of Amrit sleeping for so long, however, by midday Amrit still hadn't woken. I took her downstairs and tried to feed her milk, which she would not take. When I undressed her and changed her nappy, Amrit still did not wake up. She was still very hot so I knew there was something wrong. I called the out of hours surgery again and explained the symptoms to the lady. She didn't seem too concerned and said a doctor would call me back. I called my neighbour who is a registered childminder and who often looked after Amrit. She told me to call an ambulance, which arrived in less than five minutes. I remember two paramedics running into my living room. They put an oxygen mask on Amrit, said she needed to go to hospital and asked me to go with them. Everything happened so quickly I was in a state of shock not really taking it all in. On the way to the hospital, one of the paramedics gave Amrit an injection and she briefly opened her eyes. I remember thinking that she was going to be OK.

When we arrived in the A&E department of Birmingham Children's Hospital there was a team of doctors and nurses waiting for Amrit. I stood in the corner of the room watching them all working on my little girl. I was finally told they would be taking Amrit up to Intensive Care but the seriousness of her condition still didn't register with me or my husband.

In ICU a consultant told us they suspected a number of things, including meningitis, and therefore Amrit had already been started on the appropriate medication. To control the fits they had sedated her, and the doctor said he would know more once she woke up. I waited all night in the family room for a nurse to come and tell me that Amrit had woken up, but the nurse never came. By morning, the doctors were very concerned that Amrit hadn't woken up but I still had faith in my daughter, and convinced myself she would wake up in her own time. I continued expressing my milk which was fed to Amrit via a tube. She looked so small in that huge bed all wired up to so much machinery.

Amrit had various tests including a CT scan and chest x-ray which initially pointed to pneumonia. The doctors told us there was some brain damage but they weren't sure of the extent. I remember discussing with my husband any changes we might have to make to the house to accommodate any disability Amrit might face.

Doctors continued to carry out tests for metabolic disorder, pneumonia and TB. On Wednesday, Amrit was stable enough to have the lumbar puncture. She also had an MRI scan which showed severe brain damage. The consultant regularly updated us but I remember there came a point when I had had enough of their negative attitude. I told them they were not to speak like that near Amrit as I was convinced she could still hear us. I also didn't want to hear what they were saying because, up until my little girl died, I believed in miracles. I asked them to talk to my husband in future. My husband and I, with our youngest son, stayed with Amrit during the day and my oldest son would visit after school. The boys would return home with their father at night while I stayed at Amrit's bedside. This time was very precious to me as it was time between me and my beautiful little girl when I willed her to pull through night after night. It was Wednesday night and my sister was stopping at the hospital with me when we noticed Amrit open her eyes very briefly. It was a magical moment and I gained more faith that she was going to be OK. Unfortunately, Amrit's condition began to deteriorate after that.

By Friday night, the doctors wanted to see if Amrit could breathe for herself and wanted to take her off the ventilator. Unfortunately, she had trouble and was put back on the ventilator.

By Saturday, the severity of the situation finally hit me. Meningitis had been confirmed and the consultant said they were going to withdraw all care by Monday if Amrit continued to make no progress. I remember breaking down for the first time that week in my husband's arms. I stayed with Amrit but it was evident her condition was deteriorating because she became very distressed when anyone touched her. I was heartbroken and could not stay with Amrit that night, my husband stayed with her.

On Sunday morning, my husband came home and said Amrit was worse during the night. We returned to the hospital and asked to see the consultant. We asked him if Amrit could be taken off the ventilator sooner rather than later as we could not bear to see her in pain. It was decided the consultant would come back later that night when all the visitors had gone.

"Our families were not informed of this as we did not want anyone crying around Amrit. I asked my sister to bring the boys in to say goodnight to their sister",- says Jasvinder Bharj.

Amrit was moved to a separate room for privacy. I was asked not to express any more milk as they were going to stop feeds, which was heart-wrenching for me as a mother. The consultant took Amrit off all the machines at 11pm Sunday night and she was placed in my arms. I had not held my little girl for a whole week. My husband and I spent the night with Amrit not knowing whether she would survive or not. All sorts of things went through my mind that night. Of course I wanted my little girl to survive, but at what cost? What quality of life would she have? What changes would we as a family have to make if she were to survive? If anything was to happen once Amrit was taken off the machines which were keeping her alive, I had expected it to have been pretty much straight away. All night I held my beautiful girl, telling her not to be scared. She finally took her final breath at 9.40am Monday morning. I will never forget that last breath.

We were asked to dress her and carry her to a special room in another part of the hospital. We put her to bed surrounded by teddies and said our final goodbye. Getting into the car without our precious little girl was awful and having to break the news to our boys was horrendous.

The week following our great loss was taken up with funeral arrangements and having people around paying their respects. We were all still in shock but once the shock began to wear off it was replaced with anger; anger towards the doctor who failed to spot the signs, anger towards God who had let us down so terribly and even anger at Amrit for leaving us.

I wanted to find out as much as I could about the terrible disease that had robbed my daughter of her precious life, so I spent hours on the internet reading about it. In a strange sort of way, it helped me to feel close to Amrit. It was here I came across Meningitis Research Foundation. I was initially very interested in the support they provided to people like me. My husband and I tended not to talk to each other about how we were feeling and I so desperately wanted to talk to anyone who would listen. I contacted the Foundation several times to talk. The one time which I remember clearly was the first Christmas after Amrit's death. I phoned and cried to the person on the other end, it was so reassuring to know I was not alone. Another time was a week after Christmas and my sister had just phoned to say she had had her baby. I remember just crying and crying for my loss even though I was happy for my sister. I phoned the Foundation and the lady on the line reassured me that what I was feeling was quite natural, I wasn't judged, just comforted.

Since Amrit's death, I have donated money to the Foundation and encouraged family and friends to do the same. I cannot express how much the Foundation has helped me to deal with my loss as well as to keep me updated with news of any progress being made to eradicate this awful disease. Thank you.

Jas Bharj
April 2009