Mandy and David Stratton’s family life went into a spiral when their son Jacob developed pneumococcal meningitis. Here, David describes what happened and the consequences that followed. We’ll be charting theirs and Jacob’s story over the coming months
‘Your son has got extensive brain damage.’
Anyone who grew up in the Seventies will remember Joey Deacon (the author of the 1974 book Tongue Tied who had cerebral palsy). Kids being kids (ie cruel bastards), took to using the term ‘Joey’ and not as a term of endearment.
Moving several decades forward, seeing a disabled child caused me confusion. Why would parents take such a selfish decision? With modern technology having evolved, why would a caring parent take the decision to go through with a pregnancy that was anything other than perfect? How little I knew. The truth is that the majority of disabilities in the West are caused at birth and usually due to problems during delivery. Often a lack of oxygen to the brain causes irreversible damage.
Back to us, though. Our first son Max had plenty of issues with asthma and horrible eczema (requiring some hospital stays). We had a steep learning curve into parenthood. We were relieved to experience the safe and planned arrival of son number two, Jacob. If you’ve read our profile you’ll know what happened next: pneumococcal meningitis (not the type with a rash). The first doctors to see Jacob didn’t recognise the symptoms, which led to the most traumatic month of our lives, including hospitalisation, a blood transfusion, tubes put into Jacob everywhere, being told he might not make it, a forced coma. Then after four or five days in the Evelina Children’s hospital in London we were told that Jacob had suffered extensive brain damage – cerebral palsy, the same condition that Joey Deacon had.
As a parent, this is horrible, horrible news to take in. The dreadful truth is, it would have been easier to have lost Jacob.As time passed we discovered more about the condition and we faced a lot of uncertainty. We learnt that our brains continue to grow and develop at a very fast rate until the process slows down at about three years old. So, despite the fact that our little man had lost a ‘chunk’ of his processing power, it was theoretically possible he could ‘re-wire’ (or just set up) his brain differently. So the first three years were spent doing as much as humanly possible to give him the best chance. Hoping beyond hope that, somehow, Jacob would suddenly start to do things normally, albeit slowly, but normally. Perhaps he would be able to talk, crawl and maybe even walk.
However, a normal child learns things at such a speed, the general perception is that a child needs to repeat something 12 times to ‘learn’ it. A child with cerebral palsy takes an average of 144 times to learn the same thing. As they say, you do the maths.
The hardest things are the simplest. Taking Jacob for a walk early on in his life was relatively easy as he was in a normal buggy and, even if I do say so myself, he’s a good-looking little dude. People would not notice him, or should I say, not notice anything different about him. As Jacob grew we started to face more challenges, such as the pushchair. Jacob has little trunk control, meaning he can’t sit up by himself, so he needs a specialist wheelchair/pushchair. Here is lesson number one for a parent of a disabled child – you have to learn to negotiate. As modern parents, we wanted a pushchair that was practical (ie easy to put up and down, easy to put into the boot of the car and one that didn’t attract too much attention). The first model offered was heavy and needed to be physically taken apart to fit into the car, so not ideal when shopping is involved and it’s raining. It was also very obviously a disabled child’s pushchair and it would look so different in a crowd and draw unwanted attention. This was something that was very difficult for us to deal with at this early stage in our ‘education’. So battles were fought and a more suitable, attractive model was found.
As Jacob grew, society as a whole started to notice him. Jacob is, let’s face it, fortunate not to be growing up in the early Seventies, but it’s a very hard experience to walk down a street pushing Jacob and see people’s different reactions. Most take a second look. Some are overly friendly and there are probably a good few who look at us and wonder why we went through with a disabled pregnancy. For the first few months you feel like wearing a banner saying, ‘YES, HE IS DISABLED!’ Kids are generally great, though (well, the ones we’ve come across, and yes, it’s all ages, including teenagers). The younger kids ask questions and this causes us no problem; we are happy to explain in simple terms why he is like he is and the older kids seem to be fully accepting of Jacob’s condition. What a difference four decades can make!
Jacob turned five in February this year and we realise we are only at the start of our journey. We will continue to share our experience via this regular feature and if you’ve got any questions, please, please ask.
The Strattons have set up a website community to help parents of disabled children. Visit and-me.org.uk for more information.
Response from the Meningitis Research Foundation
It’s a parent’s worst nightmare when their child gets sick. You hope that a dose of Calpol and a good night’s sleep will do the trick, but what if it doesn’t?
The early symptoms of meningitis are often confused with the flu or a more common virus, which can unfortunately make diagnosing meningitis and septicaemia very difficult. Meningitis and septicaemia are deadly diseases that can kill in hours or leave a quarter of survivors disabled or suffering from after-effects.
Meningitis is the inflammation of the lining around the brain and spinal cord. Septicaemia is the blood poisoning form of the disease. Symptoms can include a severe headache, vomiting, high fever, stiff neck and sensitivity to light. Many people (but not all) also develop a distinctive skin rash. In babies, look out for a bulging soft spot, refusal to feed and a high-pitched cry. Generally, a parent knows when their child is suffering from more than just a common illness and we also say that all parents should first and foremost trust their own instinct. If you think your child is seriously ill and may have meningitis seek urgent medical attention immediately.
Meningitis Research Foundation’s current campaign ‘Counting the Cost’ calls on government to make sure that all types of meningitis that can be vaccinated against are prevented. Currently there are three vaccines in the childhood immunisation schedule which prevent various strains of meningitis. These are MenC, Hib and Pneumococcal, but one of the biggest causes of meningitis is Men B, which currently there is no vaccine for.
Men B accounts for about 50 per cent of cases of meningitis in the UK and so is the single strain that is responsible for the majority of the burden. It can cause life-altering effects so it is imperative that a MenB vaccine is introduced into the immunisation schedule as soon as one that is safe and effective is available. We are expecting a licence from the European Medicines Agency for a new MenB vaccine by early 2012. This would be a great step forward in managing the cases of meningitis in the UK if introduced into the National Immunisation Schedule by government.
For more information about meningitis, please log onto meningitis.org.uk