Our son Kian was a hero.
Five times he battled in the ANE war.
Kian had his first attack when he was 14 months old, this and the following 2 times were all diagnosed as Encephalitis. It wasn’t until the fourth time that ANE was diagnosed and genetic testing was done that confirmed he had the RanBP2 mutation.
He had a per novo mutation meaning that it wasn’t inherited; no one else in the family has the gene mutation. This is a new genetic mutation in him only.
In January 2016, Kian came home from school on a Friday with flu symptoms, a headache and temperature. We monitored him and gave him paracetamol and he seemed ok. The next afternoon he started to get sleepy and the headaches and temperature returned. I rang the hospital and took him in. He was given antibiotics and the next day they did an MRI and throat swabs. Due to Kian’s history they monitored him hourly and by the Monday felt he was well enough to go home although he was still in pain from his headache and was still vomiting. Watching him at home was heartbreaking as the headache that had gone when leaving the hospital had returned with more intensity.
I had to return to the hospital later that day to collect medication for Kian and talked to the nurse on duty who felt that they should never have sent him home.
I had been told that a consultant would be ringing to check on Kian’s condition the afternoon after he had been discharged. I waited and waited until finally at 9pm I rang the hospital telling them I was very worried as Kian was in a lot of pain, was still vomiting, and telling me “Mummy it hurts”. The hospital advised us to bring him back in.
Even after this we still had to wait 4 hours before Kian was admitted to a ward.
Our boy was supposed to have open access due to his medical history.
Our little man deteriorated rapidly at this point, he was vomiting bile and couldn’t control his bladder. His body was starting to shut down. The staff at the hospital gave him more medication and numerous tests, Kian was only responding to pain.
Finally on the Tuesday his results from a flu swab came back positive for Influenza A. It was decided that Kian should be transferred to a larger hospital as they were concerned about his airways. He was admitted immediately into PICU. This hospital was amazing.
On the Thursday around 4am Kian suffered a seizure and they sent him immediately for a CT scan. Kian’s eyes were not responding to light. Kian was on multiple medications including steroids, anti seizure and blood pressure. We were told that Kian may not be able to breathe on his own. This was the worst news of my life, but I knew Kian was a fighter.
On the Friday Kian had another MRI, this showed major amounts of swelling in his brain and brain stem. At this point he had more seizures, his temperature kept spiking, his blood pressure was up & down and he was releasing too much urine.
The Nurses and consultants were doing everything they could for Kian and he was constantly monitored.
The following week on Thursday the 11th February we were told that Kian had Acute Necrotizing Encephalopathy and that the Dr’s were going to reduce his medication so Kian could show us what he could do over the next 48 hours.
They were the longest 48hours of my family’s life, we didn’t want to leave his bedside hoping and praying he would take a breath or move his little fingers or something but, NOTHING.
They told us we would have to make the decision for Kian if there was no activity.
I asked myself how could I do that- there must be more they could do, anything, there was nothing more they could do for Kian the damage was already done.
They had contacted London hospital to see if there was anything they had missed and there wasn’t.
Saturday 13th February 2016 myself and Kian’s daddy had to make the decision to turn off Kian’s life support as that was the only way Kian was being kept alive. At 8.45pm we took our little man off the machine. Our little man was pronounced dead at 9pm.
My handsome, blue eyed hero had lost his fifth and final battle with ANE.
I wish there was more that could have been done for Kian but this horrible illness had killed our son and I would love to raise awareness. I would like to say trust your instincts and don’t let the doctors palm you off, watch your babies and have any flu symptoms checked out. I would hate for other families to go through what my family has.
Our shining star forever
Kian 21st October 2010 – 13th February 2016