Mylo Westwood's story

My son Mylo was born with a form of spina bifida called lipomyelonmeningocele, he is also on the spectrum.

For many years he only showed a few mild symptoms from the condition so had no surgery, but when he reached 9/10 he began to form scoliosis at the top of his spine and had recurring problems with his feet (loss of sensation and skin breakdown). The hospital along with myself decided it was time to try surgery. (September 2018)

It was a big long op, around 9 hours. All went ok, and as the days past he began mobilising very slowly.

We had been in hospital around a week when Mylo complained of a headache, which is not uncommon after this kind of surgery, He also began vomiting. It was all put down to the surgery. The next morning I noticed that Mylo was leaking fluid from his incision site. He was given a local anaesthetic and re stitched and were told he could go home in a couple hours but to keep an eye on his temperature. He was still vomiting and had headaches but he was happy to be home.

At around 4.30 We got him upstairs as he said he was very tired and left him to sleep for a bit checking on him. During this time I searched CFS leak on Google and found meningitis, I thought I was thinking the worst and Google always scares you with symptoms. 

Around 6pm I went in and he was dripping with sweat. I woke him up and Mylo couldn't see properly, I'm not sure if it was confusion from the fever. But he couldn't see his little brother who was in the room. his incision had also been leaking fluid again. We were terrified.

I called the hospital and we went back in. He was stitched again and bloods taken. Mylo at this point was so, so poorly he was a grey colour, was vomiting, floppy and couldn't stand the light (not even a standby switch on the TV) at around 4am a nurse came in and told us we need to start him on antibiotics now as we suspect he has meningitis. We were absolutely broken. I cannot describe how scary it was to hear that. 

Mylo was hooked up to antibiotics 23 hours a day for about 3/4weeks. He ended up having to go to theatre 8 times until the leak stopped, he lost over stone in about 5 weeks. He ended up being in hospital for around 7 weeks. And thanks to the wonderful hospital and nurses recovered and of course through Mylo’s strength. We are so proud of him.

Meningitis acts fast in less than 24 hours he went from walking around happy to not being able to move, I honestly thought he was going to die. Mylo never had a RASH through it all.

We were so lucky in that he didn't experience lasting physical disabilities, but he has severe headaches sometimes even now. His mental health was also affected massively and it has taken a long time for him to accept what happened. I think it has for all of us as a family.

If I have any advice I'd say please If you have any concerns about someone showing symptoms get help fast. Time is not on your side with meningitis. Do not wait for a rash. We were so lucky to have found it and treatment offered quickly. Thank you for reading.

Sophie Westwood
October 2019