Meningitis in your words

Harrison Grahame's story

  • Location: England
  • Categories: GBS (Group B streptococcal)
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Recovery with after effects
  • After effects: Other
Harrison Grahame

Harrison was taken ill at four weeks old.

He woke up one Monday morning extremely upset and wouldn’t feed and when he calmed down he was grunting. I was due to see midwife that afternoon but I called and asked him to come round sooner. He arrived and was not happy with his colour, floppiness and the grunting and sent us to A&E. We thought maybe it was an over-reaction?

At A&E we were told they thought he had an infection and we were sent to a paediatrician, but on the way he went a funny colour, his blood oxygen levels went down and we were taken to resus. Within 10 minutes we had 14 people working on him and within the next few hours the situation got worse and worse. He was put onto a ventilator, transferred by the CATS team to GOSH and put into isolation.

"He is a miracle and we are so proud of him for fighting back"

He tested positive the next day for GBS; we had never heard of it and were for a short time relieved that they knew what was wrong. My husband looked it up that night on the net (GBSS) only to realise how serious the situation was.

The next day we were informed that this had developed into meningitis. We were devastated.

By the end of the week he was showing signs of improvement and there was talk of him coming off the ventilator the next day.

When we arrived the next day, full of hope, things took a turn for the worst. He had started fitting and proceeded to do so all day. The only way to control this, after trying every other drug, was by putting him into a drug-induced coma.

The next day we were told that in other cases like Harrison’s – where children had to be on such a high dose of medication – the outlook was very bleak, he would be severely brain-damaged affecting his sight, hearing, mobility, communication etc. Our options were discussed the next day and it was decided, with the hospital in agreement, that if the MRI told the same story that we would turn off his life support. We began to prepare ourselves and our families. A psychologist was provided for us to talk through the horrifying situation that we were facing. They stared to wean him off the induced coma drugs in order to carry out the MRI.

The next day we arrived to find that he had started to breathe for himself, we were shocked. This was the start of Harrison’s recovery, the neurologist said that his reflexes were responding and two days later he came off of the ventilator and was transferred to a neurology ward after 12 days in PICU.

He made progress each day, although there were still concerns about his future as they were unsure about his sight and hearing following the MRI that was carried out whilst still in PICU. It had shown that there is significant damage to both the left and right frontal lobes but unfortunately this does not tell them what this could mean for him.

We were eventually sent back to our local hospital, after another week at GOSH, where we stayed for the last three days to finish his three week course of antibiotics. Three weeks and one day later we got him home, we were petrified but ecstatic.

Since coming home we have had a hearing test which is all within normal ranges, this will be re-tested at eight months as it can deteriorate over time. His sight seems to be as it should be for his age but a repeat appointment will take place in one year to confirm this. We have a way to go but he is a miracle and we are so proud of him for fighting back!

Kelly Grahame
March 2010