Meningitis in your words

Maggie and Hazel Eaton's story

  • Location: England
  • Categories: Meningococcal
  • Age: Baby 0-1
  • Outcome: Recovery with after effects
  • After effects: Learning difficulties
Maggie and Hazel Eaton

I gave birth to twins Maggie and Hazel in May 2008 by Caesarean section. Both were healthy and weighed in at 7lbs and 6lb 5oz. After a five-day recovery period, we were discharged and returned home.

When they were aged between eight and nine eight days old, I noticed that the twins had begun to behave strangely - they were feeding poorly and Hazel had a high-pitched cry overnight. Also Hazel seemed to be unhappy when passed from one person to another. Trusting my instincts and aware that something was wrong, I asked the visiting midwife, the breastfeeding councillor and the delivery suite nurses for advice but none suspected nor mentioned meningitis. I was told that this was 'one of those things' and maybe the twins were just getting used to breastfeeding.

On day nine the midwife visited early in the morning to assist with the breastfeeding problems. Whilst she was there Hazel's breathing paused and her lips turned blue, however, she quickly started to breathe again when picked up. She was then very pale indeed and the midwife then realised that there was something seriously wrong and both babies were rushed to the hospital. Once there the staff did not seem too alarmed and we were placed in a side room to await assessment. After a few minutes Hazel's breathing again stopped and it was only then that she was rushed into the Special Care Baby Unit (SCBU) with Maggie

Both Hazel and Maggie began to deteriorate rapidly, with Maggie seeming to be some hours behind Hazel in the course of the illness and a little less severely affected. Hazel had further pauses in respiration and also began fitting. By the next day she was considered to be too ill to be able to be treated at Hereford Hospital and she was fully ventilated and transferred by ambulance to Stoke City Hospital's Paediatric Intensive care Unit (PICU) 100 miles away. Maggie remained in Hereford and was to be transferred the next day.

Hazel's first night in PICU was dreadful and the doctors admitted that even with all the drugs being pumped intravenously into her system, they were having great difficulty in maintaining her blood pressure and had no more options for treatment. Basically it was up to her to fight the disease and fight for her life...which she did and she made it through that first long night in Stoke.

"I would describe the next three days as 'hell', with both twins fighting to pull through"

Maggie arrived in Stoke PICU the next day and was also very poorly indeed, although not requiring full ventilation and not having so many convulsions.  I would describe the next three days as 'hell', with both twins fighting to pull through, despite further complications and undergoing a multitude of unpleasant, but necessary medical procedures. The staff were amazing and cared for me and my husband Jonny as well as for Maggie and Hazel. Their dedication and kindness was unwavering.

Maggie showed signs of recovery after two days in PICU and was subsequently transferred to the children's ward, with Hazel remaining in PICU for a total of four days before both girls were taken back to Hereford Hospital to continue their treatment and recovery. After ten days, Maggie was discharged although she remained with Hazel in hospital so that I could continue to breastfeed and care for her whilst remaining with Hazel. Hazel became well enough to return home after a total of two weeks in hospital, although she remained on anti-fitting medication for some three months after the meningitis and encephalitis episode.

The twins' recovery is ongoing and we are worried about possible after-effects, especially with Hazel who, although apparently cognitively alright, does have some developmental delays with regards to her mobility. However, she has physiotherapy and hydrotherapy and is progressing well. Maggie appears to have no after effects, however, for both children it is a waiting game as no-one can tell if their brains have been permanently damaged, or to what extent. Problems may not become apparent until they begin school, for example.

It's hard not to worry about the girls' long-term development, especially when looking at Hazel and then at Maggie, and seeing the differences in development between them. My concern is: when will we know the extent of any developmental delay, and - for Hazel - will she be able to live a 'normal life'? No one can answer these questions at the moment - the brain is such a complex organ that we still don't know the ins and outs of how meningitis affects it. It's vital to be aware of the symptoms of meningitis and septicaemia, to trust your instincts as a parent, and to have the confidence to get medical help if you suspect a case.

The girls are having follow-up care to check on their development. Both have three-monthly checks with a community paediatrician and six-monthly check ups with the consultant at Hereford Hospital who treated them.

Vicki Eaton
July 2009