Jasper
Sunday – Tuesday Jasper has a bit of a temperature but was otherwise fine, nothing to be concerned about. On Wednesday at 1.11am I woke to the sound of him vomiting. I got him up to change him and his bed. When we got to the lounge he was still trying to vomit so I lay him in the recovery position, he wasn’t crying, he had glassy eyes and was moaning. We called healthline who immediately called an ambulance. The ambulance arrived 20mins later (we live rurally) and immediately phoned a helicopter.
He still hadn’t cried, he was just lying there moaning with really stiff legs.
We went to Oamaru hospital in an ambulance, then it took an hour to stabilise him to be ready to go in the helicopter to Dunedin. During this time one of the paramedics realised he was in the middle of a very, very long seizure – over an hour long at that point. We got to Dunedin and walked into a room with every specialist needed, it was so overwhelming, I still had no grasp of how serious things were. They started talking about meningitis or sepsis, which I had kind of already worked out. It took a very long time to stabilise him and stop the seizures constantly happening. They said we would probably be headed to Starship within the next few days.
They took him for an MRI, when they had reviewed it they came and told us a private jet was on its way to take us to Starship Hospital in Auckland – our countries only children’s hospital – we needed to be there asap. At some point on Wednesday about midday his eyes stopped responding to light. We were at starship by 9pm Wednesday. They did a CT scan and then took us to a room to talk. It wasn’t meningitis or sepsis, it was Acute Necrotising Encephalopathy – something I had never heard of. When he had the MRI in the morning he had swelling around his brainstem and frontal cortex, by the time he had a CT in the evening his whole brain was swollen, haemorrhaging and parts of it were already dead.
On Thursday they did an EEG and functional testing. His brain was gone, there was no activity. He went from a slim chance of him living with severe brain damage to no chance of living, he was already gone and we had to choose a time to turn off the machines.
At 3.33pm on Friday we turned them off, he passed at 15.55. My beautiful strong healthy boy is gone, it was so so quick, from healthy to gone and it hurts so much. I just want him to come home. Jasper passed away on Friday 28th February 2025, he was 11 months and 1 week old.
The staff at every hospital were amazing, I have never seen our health system so functional. They were all so kind and helpful through such a horrid time. My boobs suffered, after 2.5 years of constant breastfeeding (his sister for 1.5 years, then both for 6 months, then just him) my milk just stopped, pumping was too stressful and I got mastitis – the final dagger – not being able to hug people because my boobs we’re too sore.
