My daughter Coco was born at home on 28 May 1996, she was my second child so I was not a nervous first time mum.
During her first week she became ill, I noticed a rash on her tummy, her hands and feet were blue but she had a really high temperature and she seemed to sleep all the time. When I changed her nappy on the changing mat near the window she seemed to curl herself up into a ball and turned away from the light.
Despite speaking to a doctor twice who said she was a young baby and they “go and up and down during the first few weeks” and he was sure she was ok it was the midwife who visited and said: “your baby is very sick”.
Coco was rushed to St Mary’s Hospital in Paddington and was immediately given a lumbar puncture and her condition deteriorated really quickly. We arrived at lunchtime and by 4pm she was in ICU and I was told she probably wouldn’t survive. She was hooked up to lots of machines and was given massive doses of intravenous antibiotics which caused her veins to collapse and the whole experience was very traumatic and very scary. I stayed with her the whole time and despite her being so poorly she continued to breast feed and within a day she started to make tiny improvements.
The staff at the hospital were amazing and very supportive; she was in intensive care for 2 weeks and then spent a further week on another ward. When she was discharged from hospital she then had visits from the health visitor to administer further antibiotics.
The cultures never grew so we never had a definitive diagnosis of what she contracted but I remember Group B Strep being mentioned.
I was not offered any support or advice after she was ill by organisations such as Meningitis Research Foundation. It was pretty tough and it would have been a great help to have talked to others who had been through a similar experience or discuss what possible after effects she might have.
We were warned that she may suffer from after effects such as brain damage or hearing loss so for the next 2 years she was monitored by the hospital but thankfully she escaped unscathed. We were told by the doctors that if we’d gone to hospital any later it could have been very different.
As a result of Coco being so ill I do think I became overprotective of her when she was younger and worried whenever she caught a cold or saw a rash. I was not particularly conscious of meningitis before and didn’t imagine it could happen to us but there were a number of babies in the hospital at that time with the disease.
The whole experience really brought the family together which was fantastic and they were always visiting me in the hospital, bringing food and keeping me and Coco company. I can remember wanting a dress for her and got really upset that she didn’t have one only baby grows so my friend Emma got one for her and brought it into the hospital.
I realise how lucky we were that Coco survived the disease as I’ve since heard of family friends who have had experience of meningitis and septicaemia – one whose son was left severely brain damaged by the disease and sadly died at the age of 17 and another whose daughter contracted septicaemia when she was a few months old and had to have fingers removed and has been left badly scarred.
I didn’t realise that children are immunized against certain forms of meningitis but not all of them so I would urge parents to make sure they are aware of the signs and symptoms of the disease and make sure their child is up to date with all their vaccinations especially given the measles epidemic that is happening in the UK at the moment.
My one piece of advice to parents who suspect their child is ill is “don’t take no for an answer”, if you think there is something wrong with your child keep insisting they get seen until you are happy the doctors know what is wrong with them and are treating them. If I hadn’t Coco might not be here today.