Meningitis in your words

Liam Stone's story

Location: England
Categories: GBS (Group B streptococcal)
Age: Baby 0-1
Relationship: Self
Outcome: Recovery with after effects
After effects: Learning difficulties

At 10.23am on Tuesday 22nd April 2008, baby Liam James was born to my daughter, Charlotte, after 17 hours of labour. During Liam’s delivery, forceps had to be used to assist the birth and probes were attached to his head to monitor his heart rate etc. Unfortunately, he became at risk of infection as the delicate skin on his head was damaged by the probes.

Due to Charlotte’s fluctuating blood sugar levels and the manner of Liam’s birth, Charlotte was placed in the high dependency ward so Liam could be more closely monitored. He appeared to be a healthy, but quiet baby but there were immediate causes for concern. His core temperature was below normal and Charlotte was advised to keep him wrapped in extra clothes, hat and a blanket to keep him warm. It was also noticed by members of the family that he was not feeding particularly well as much of his milk was being ‘spat out’ and his eyes were ‘vacant’ and not opening much. His blood/sugar levels and core temperature were monitored over the next 24 hours and when his temperature started to climb, Charlotte was advised to remove the extra clothes. Liam’s temperature appeared to stabilise and two days after he was born, Charlotte and Liam were discharged, having been told that he was fit to leave. Charlotte and Liam’s dad took him home to their flat and they prepared to start their life as a family.

During a visit by family members when Liam was just three days old, we all noticed that he was showing signs of distress; he seemed to be ‘murmuring’ with every breath, was not taking his milk and cried as soon as he was handled. During the day, Liam had several fits and his temperature rose alarmingly. Charlotte had not been given any information about meningitis and none of the family recognised any of the symptoms. The midwife was called and when she saw Liam, she immediately called an ambulance. Liam was admitted to the neo-natal intensive care ward at the Princess Anne Hospital in Southampton, placed in an incubator and diagnosed as suffering from Group B Streptococcal meningitis (GBS). He was given a lumbar puncture which revealed a white blood cell count ‘in the thousands’. Charlotte was told by a doctor that his chance of making it through the next 24-48 hours was 50%.

"We now are now left worrying about the long term effects"

Liam survived but was kept on intravenous antibiotics and phenobarbitone in intensive care for the next two weeks. As his condition improved, he was eventually ‘promoted’ to a neo natal ward. He completed his course of antibiotics and released from hospital on Sunday 11th May aged two and a half weeks old.

Three weeks later, on the morning of Sunday 1st June, my daughter once again became concerned about Liam’s health and took him to A&E at Southampton General Hospital. He was given another lumbar puncture and his white cell count was again found to be higher than normal. He was immediately readmitted and another course of antibiotics started after it was suspected that he had GBS meningitis once more!

As his white blood cell count was lower than the previous time, Liam was allowed to go home after three days with a cannula and his antibiotics were to be administered at home. Unfortunately, his cannula ‘tissued’ up every 48 hours and he had to return to hospital for numerous new cannulas to be fitted over the following two weeks.

After a few months, we were told that Liam appeared to be clear of meningitis and the phenobarbitone treatment was stopped. However, due to concerns over Liam’s immune system he continued to be on oral antibiotics until he was a year old.

Following an MRI scan, we were told by doctors that there was ‘significant’ damage to both sides of Liam’s brain which had been caused by the GBS.

Liam is now (August 2011) nearly three and a half years old and is a happy, lively little boy and has not suffered any outwardly visible physical damage. Despite this, we now are now left worrying about the long term effects of the meningitis. Liam has had numerous follow up checks on his immune system, hearing and sight and recently had a brain scan to see if there are any signs of epilepsy (we are awaiting the results). He regularly attends pre-school and play therapy and his progress is carefully monitored. My daughter has been told that Liam’s speech development is at the level of a child aged around two and a half and he appears to have behavioural problems and a poor attention span.

Liam is one of the lucky ones to have survived meningitis but an earlier diagnosis and better information may have prevented Liam having been discharged from hospital with the virus. Charlotte has since been informed that she could have been screened for meningitis prior to Liam being born. If this screening had been offered to her, it may have identified that she was carrying the virus and preventative antibiotics could have been prescribed.

We don’t know what the future holds for Liam but we keep our fingers crossed!

Nigel Bruty
September 2011