Group B Strep meningitis
Mikey was born on the 3rd April 2008, a healthy 8lb 10oz, and seemed perfectly healthy. He fed an hour after being born and three hours after that.
But from then on his feeding became erratic. I notified the doctors in hospital, as well as asking them why his left leg was always bent up and he cried when you tried to straighten it. They said it was all fine and released us after 12 hours.
When we got Mikey home on the Friday he whined constantly, he hardly fed and he did not sleep unless we constantly stroked his head.
On the Saturday the midwife came and I raised my concerns again, and again she said he was fine. By Sunday afternoon he had not fed in over 12 hours, his head was locked to one side and he cried constantly. By this point I'd had enough and rang the midwife, who said to bring him to St James' Hospital.
By the time we got there he had become unresponsive and hypothermic and in two days he had dropped to 7lb. They asked me if I was a GBS carrier, to which I replied ‘what's that?’. They said if you haven't heard of it you haven't been tested. They took urine and blood and then performed a lumbar puncture on him. It looked like milk and they told us there and then it was meningitis; my world came crashing down around me.
I went to comfort Mikey as he was crying, as I held his hand he went quiet and was staring blankly, he felt cold and looked grey. I'll never forget that for as long as I live. I said to the doctor ‘something's wrong’ and he immediately called to the nurse ‘bag him’. This happened four times so he was sent straight up to PICU and put on life support. There were tubes everywhere even in his head, he became swollen and our little man was unrecognisable. We were told that night he may not make it and if he did he may have brain damage. We were shell shocked.
He responded to treatment really well and was moved after five days to a children's ward, but after only two days he became ill again. They performed a CAT scan and we were told the bad news that he had an abscess on the brain and we wouldn't know for a few weeks what that would mean for him.
After nearly four weeks in hospital Mikey was released, but we had to return two weeks later for an MRI scan which revealed he had some damage to the brain which controlled his motor functions. We were devastated. It was explained to us that we may never see any results of the damage as his brain had not fully developed and may correct itself, or there maybe something, unfortunately we just had to wait and see.
The first year of Mikey's life was really hard on him, us and our five-year-old daughter. We were always watching to see him hit milestones – which he did – and we had to deal with his bad temper.
The staff at St James' were first class and we thank them from the bottom of our hearts.
We realise how lucky we were, but after reading some of the other stories it makes me so sad that we as parents and our children have to suffer this nightmare when it could so easily be avoided with a simple test, or at least information on GBS in maternity care so that we can decide ourselves to pay for a test.
My final words are for Mikey: you are our little hero and we are amazed by you and so proud of everything you have had to overcome and still are today.xx
JUNE 2009FOUR YEARS ON
Fast forward two and a half years to November 2011. Things had settled down, Mikey was thriving, we had watched very closely his development (too closely) and he hit every milestone, maybe not in the correct order or maybe later, but still hit them. So at this point we were thinking we have got through this unscathed he is going to be OK. But in the back of our minds we were aware, but trying to ignore, the fact that Mikey fell over a lot, he seemed to run with his right foot on his tip toes and he carried his right arm awkwardly, he talked loads but some words were still quite hard to understand.
So at his consultant’s appointment in November I told her what we had noticed. She got Mikey to do various things, my heart was pounding because I knew what was coming I just didn’t want to hear it. My husband was abroad working and I was thinking how am I going to tell him?! Then she told me what I’ve waited three years to hear, Mikey has a hemiplegia, which means he has cerebral palsy which only affects his right hand side of his body. At this point I’m in shock, it sent me back to when he was three weeks old and they told us about the brain damage. I had convinced myself he was going to be fine and here I am being told actually he isn’t, I cannot describe how I felt or the thoughts I had. I told nobody except my best friend for a week until my husband came home which was awful, but it was even worse actually telling him! He was completely devastated, all his hopes for Mikey at that point were shattered, the dreams of him playing rugby for the Rhino’s or England seemingly gone, or more importantly that he would lead a completely normal and healthy life.
It’s now May 2012 and it’s taken us six months to come to terms with this news and get our heads round it. We’ve gone through all emotions AGAIN like three years previously from anger, to sadness to renewed hope. What gave us our hope back was purely Mikey himself, he is a superhero in our eyes – he beat meningitis as a newborn, he has overcome every obstacle put in front of him and always with that amazing smile. Everyone who meets Mikey fall in love with him, he thinks he was put on this earth to entertain people and make people smile. He’s so affectionate, usually more for his dad unfortunately for me! He is so active and does karate, Thai boxing and his progress in his pre-school class is really good. He does everything every other child does, it just takes more effort from him.
Of course it’s not all rosy, he has to have speech therapy, he’s under physio/ orthotic/ occupational health therapists, he does suffer with muscular stiffness which does hurt him so we have to do nightly exercises with him and he wears a night leg splint but again he just takes it in his stride, he truly is an inspiration!
I’m writing this ultimately to hopefully raise awareness of GBS, but also to offer an insight into the impact of GBS and show people they are not alone in the aftermath of this awful disease. It’s really hard to deal with and there can be some extremely low times but also to offer hope for people who may have just received some devastating news and don’t know what the future holds. We still don’t know how Mikey’s future will be affected but what we do know is that if he can tackle it with a smile then we have no choice but to be positive too and I firmly believe he will go on to do something amazing with his life and this won’t be the last time you all hear his name!
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