The first symptoms
On Thursday 6th January 2011, Mattia (aged 4 months old) was a little grumpy and developed a high temperature in the afternoon. The GP surgery advised on the phone to give him paracetamol and ibuprofen and keep checking on him. They confirmed teething can give a high temperature but to ring back anytime if he got any worse. Before going to bed, I checked the symptoms for meningitis online and was reassured because he’d had all his milk, wasn’t floppy or blue…
The life changing night
Around midnight, we heard Mattia stir and whinge so we went to check on him. This was a specifically different whinge to his usual. He was struggling to go back to sleep so I took him with us. About 1½ hours later he had very bad diarrhoea. Whilst I would usually change him in the dark so as not wake his twin brother, we took him downstairs and turned lights on to check him through. There was one small purple mark on his belly. We rang the out of hours GP who advised us to take him to Stroud hospital.
We drove through the snow so it took us double the time to get there. As soon as the GP on call in Stroud saw him, he knew it was meningitis and that the situation was very serious. By then Mattia was covered in purple marks, his breathing was uneven and he was extremely pale, turning blue. He was given a shot of special antibiotics and put under an oxygen mask. The GP came with us in the ambulance to Gloucester to support the paramedics and try to keep Mattia awake the whole way. I will be forever grateful for this amazing medical professional who not only spotted the issue straight away but also dealt with it in such a calm but effective manner. Looking back, we should have been sent an ambulance at home when I first rang the Out of hours service. There was a lot of delay that night with the snow and the ambulances being stretched. To this day, it is a wonder that Mattia made it through the way he did.
I think we finally got to Gloucester around 4.30am. All available staff were waiting for us. A lot went on. Nurses and doctors going back and forth were asking about everyone else back at the house, we all had to take a preventative antibiotic. The consultant in charge was on the phone with Bristol Children Hospital who were passing on instructions. At some point we were asked to leave the room so they could intubate Mattia to help him breathe. The specialist team from Bristol arrived around 8am.
Their consultant took us into a small room and told us Mattia was fighting for his life, had a 30% chance of making it through and that they were doing everything they could. Writing this over 12 years later gives me goose bumps!
Transfer to Bristol
When he was stable enough and ready to be transported to Bristol, we found Mattia intubated from all angles, puffy, and sedated. We have no picture of him then, we did not want anyone else to experience seeing him like this but all we noticed was that he was still breathing though. That’s all that mattered. We were told the first 24 hours were crucial and he went through those brilliantly. Then another crucial 24 hours went well. The doctors started reducing the sedation and removing breathing and feeding aid gradually. There were 10 days of ups and downs in the Paediatric Intensive Care Unit at Bristol Children Hospital.
When Mattia was emerging from the sedation, there were doubts if his brain had been affected. His MRI results weren’t perfect but not all bad either. All there was to do was wait and see. After another eight days in a general ward, we finally took him home with medication to prevent any convulsions (he’d had two when emerging from sedation).
Road to Recovery: Discovering and living with after-effects.
Mattia made an exceptional recovery. He was off all medication after a few months as he never showed any more sign of epilepsy. He did have regular appointments with the physio, the community paediatrician and at the eye hospital to make sure any after-effect would be picked up asap. What Mattia had was meningococcal septicaemia type B, which means the bug affected his brain as well as his blood, causing his veins to bleed. This can lead to death, loss of limbs, and a load of other life-affecting conditions. Whilst we always try to put things into perspective and count our blessings, this life changing experience has left us all with after-effects.
Growing up, we started noticing that Mattia had issues with his hips. Many different referrals down the line after many years of investigation, we can now say his growth plates have been affected by the original infection he suffered. This means both his upper arms are much shorter than they should be. We have to accept this is how his body is built. Luckily it does not affect his daily activities apart from having to choose clothing carefully so it is not too obvious. The biggest physical issue Mattia has to deal with as a consequence of this illness is that the femur on his right leg completely stopped growing a good few years ago. This means a leg length difference of more than 20cm! Mattia wears a leg extension or shoe raise and is looking at 4 lots of leg lengthening procedures between now and his early adult life. The first one is planned for this April…Longer term, we have been told that he is looking at early hip replacement and other procedures.
Other after-effects we as a family have to deal with is the trauma we have lived through. Only now 13 years down the line am I properly able to hold a discussion and write about what happened without crumbling, losing my words… The illness also affected Mattia’s brain and left him with Acquired Brain Injury. The results of this means he needs a routine, has issues with the concept of time and memorising information, needs support at school and at home with some aspects of daily life. This can be difficult for his siblings to understand and accept. Mattia does try to make us laugh though, he has chosen the “clown” side of things to keep it all as light as can be and we do the same for him when he feels overwhelmed by it all.
Gratitude
There are so many people we are extremely grateful to. The amazing GP who saw him in Stroud has to come first in the list for doing the right things straight away and also for not panicking. There has been many other amazing medical professionals involved in Mattia’s care since then, the orthopaedic team in Bristol coming top of that list. Our neighbours, friends and the nursery staff gave us ENORMOUS support to get through the initial traumatic experience. Then there are the supportive people we have met along the line through Steve’s charities. We have always shared Steve’s view of a future free of Meningitis and the need to raise awareness so that the best outcome possible is reached when facing this terrible disease.
Please do make yourselves aware of all possible symptoms and seek immediate medical attention if in any doubt.
