Best school day for Ana-Carolina
Class welcomes little girl after six years in hospital
She is the girl doctors said should be allowed to die naturally. Her parents couldn’t accept that and after six years in hospital she went home.
Yesterday, Ana-Carolina, 6, officially became a schoolgirl.
Parents Peter Bircham and Elane de Moraes Lobo chose Stella Maris school, close to the Orewa home they rent from CCS Disability Action.
The Weekend Herald joined the family during Ana-Carolina’s first hour at the school. Dressed in school uniform, she was joined by nine students, aged 5-9, for reading and painting.
The children introduced themselves. Principal Alan Watts popped by to say hi, and pupil Ilan Hobman read The Cat in the Hat to a watchful Ana-Carolina.
It was the first time she has been surrounded by children, her first glimpse of normal life.
Ana-Carolina enjoyed the experience, de Moraes Lobo said. If she becomes stressed her heart-rate rises but it remained steady.
“This day means so much to us because after all those years in hospital, that was all she would see. She was excluded from the world.
“It is really emotional. She left hospital just three months ago and she is now going to school. It means there is hope.”
She will initially attend for a few hours twice a week in a room with the school’s associate principal and special needs coordinator, Sue Brading, and selected students.
She can see and hear well. “She wakes up every day about 5.30am when she hears the birds start to sing,” her mother said.
“Intellectually, Ana-Carolina is like any other child. She chooses her clothes, she has very strong likes and dislikes. She knows the colours, she knows numbers and she knows animals. I think school will be great for her.”
Stella Maris, a Catholic school, appealed because it was ready, willing and able to accommodate AnaCarolina.
“I’m Catholic, I studied in a Catholic school, so that’s probably something we thought would be good for Ana-Carolina.
“Also the school was absolutely welcoming to us. They have other children with high needs . . . They have pretty much everything that is needed.”
Ana-Carolina’s needs are extreme. She breathes through a ventilator. Though she is almost completely paralysed, she communicates by blinking her eyes or with limited use of her eye-controlled computer.
She needs two trained caregivers with her at all times — usually at least one of her parents and a support worker paid by the Health Ministry.
Brading, her teacher, said it was a significant undertaking and a challenge.
“I am nervous but it is an opportunity and I wouldn’t say no to a situation like this. She is a Catholic and she deserves this.” After spending almost all of her life in hospital it was time for Ana-Carolina to be around children her own age and her health was good enough to take that step, Brading said.
Liz Stenning from CCS Disability Action, who helped make the arrangements with the school, said other children would be introduced gradually.
“The expectation is that AnaCarolina will be included in the class alongside her same-aged peers, but there will be some stepping stones towards that.”
Bircham and de Moraes-Lobo have made a video and a pamphlet to explain Ana-Carolina’s life and needs to other children in the school, presented as if in her own words.
“It’s very important not to touch any of the equipment in my chair,” she says in the video, which has been voiced for her.
“I can also get sick very easily, so please if you are sick, like you have a cough or runny nose, please don’t come too close until you get better.”
De Moraes Lobo said using the ventilator raised the risk of pneumonia, and Stenning said AnaCarolina’s immune system was weakened.
“But there are ways of managing that,” Stenning said. “It’s just like a child having a peanut allergy. Other parents are aware of the needs of the children in the class.”
Ana-Carolina lost her ability to breathe, speak and move because of a neurological inflammatory condition combined with a genetic disorder. She became unwell at 5 months old.
At one point clinicians recommended the ventilator be turned off, allowing a natural death.
But that wasn’t an option for AnaCarolina’s parents who gave up their jobs as a sales and marketing manager and as a project manager when AnaCarolina became ill.
At least one of them was at her bedside for 20 hours a day during her time in hospital.
They lived on savings and equity in their Parnell home until financial pressure led them to sell and move into a home in Orewa rented from advocacy group CCS Disability Action.
Both continue to care for their daughter around the clock, assisted by paid helpers.
The healthcare system doesn’t pay parents of disabled children younger than 18 years.