A missed meningitis diagnosis stole baby William Burton's eyesight, speech and movement. But what really breaks his mother's heart is that it also stole her son's smile.
William's parents, Derek and Wendy Burton, today released a report by the Health and Disability Commissioner which finds the Capital and Coast District Health Board (CCDHB) breached William's rights by its failure to diagnose his meningitis until it was too late.
It said it failed to provide services to William with reasonable care and skill, and recommended the CCDHB apologise to the Burtons and use their case for staff education.
William was just 13-weeks-old when his parents took him to Wellington Hospital's emergency department on 16 October 2013 with a fever, having first seen their local doctor and the after hours doctor, each referring onwards due to timing.
The emergency doctor called the paediatric consultant, who examined him and did a urine test but not a blood test.
"When she was examining Will the paediatrician did mention meningitis as she thought aloud to herself but obviously dismissed it as a consideration," Mr Burton said.
She also considered admitting him overnight but in the end sent the family home late at night with instructions to return the next day if he worsened or the fever persisted.
It did, and he vomited a few times during the day, so they again consulted their local GP and were referred back to the hospital.
They saw a senior paediatric house officer - unknown to them she had only five months' paediatric experience - who diagnosed a gastro bug. They queried the diagnosis due to a lack of symptoms but she reassured them and sent them home with a warning his high fevers could continue for a few days.
The fevers did continue but the Burtons, reassured by the doctor's diagnosis and warning they could continue, did not seek further help for three days.
This time meningitis was diagnosed but by then it was too late. Their baby's brain was dying.
Their big, healthy, baby boy had smiled for the last time and gradually, as the disease took hold, he lost his sight, his hearing and his ability to move unaided.
The baby who weighed 4.82kg - or 10 pounds 6 ounces - at birth and who loved to smile is now two-years-old and can not see, hear, walk or talk.
"Before William got meningitis, he loved smiling very much," Mrs Burton said.
"Every day he smiled a lot. As soon as we touched him, like the face, he'd just show us a nice smile, big smile. But since he got meningitis ... It's gone. Totally gone."
Mr Burton said his son was a "normal, delightful, lovely" baby. Now they have a new normal.
"Things are different. There's a new normal about our lives now. William is a neat kid. He loves being held, he loves being touched.
"We still love him to pieces. He's our son.
"By focussing on the things that we need to do for Will, his exercises, his stretches, his rehabilitation exercises to try and get his brain interacting with the environment, there are lots of things that we do.
"We spend an inordinate amount of time with our boy and it's not usually forced. We enjoy that time."
Mr Burton said the family did not know how much time they would have with William; it was likely pneumonia would one day claim his life, and respiratory infections were a constant threat. He was put on a respirator only last month but the hospital said they would not take that course again.
He is currently in hospital with yet another respiratory infection, and this one meant a planned family trip south for Mr Burton's mother's 75th birthday had to be cancelled. International travel is not an option, so there is no chance of seeing Mrs Burton's family in China.
Fortunately her mother, Shunling Zhou, has moved to New Zealand permanently and lives with the family, devoting much of her time to helping with William and also helping with four-year-old Annabel.
The family today launched a website detailing their experience in the hope it would help others, Mr Burton said.
"If we could have one doctor or one medical student being extra aware of meningitis, one parent questioning a doctor when a diagnosis doesn't feel right," he said.
"If we can just get that story out there, raise awareness, then it won't be in vain, we would have been able to help someone."
The CCDHB said in a statement it fully accepted the Health and Disability Commissioner's findings and "unreservedly apologises for the grief and distress suffered by the patient and their family as a result of this regrettable event".
It had implemented a formal assessment and discharge process for patients seen by junior doctors to ensure greater clinical oversight from senior doctors, and any child who re-presented to hospital within 72 hours was now assessed by a senior doctor before discharge.
As well, it had increased staffing to ensure a paediatric registrar - a doctor who has at least three years' experience - was always on duty. As well, all paediatric medical staff must complete a best-practice guideline on feverish illness in children under five.