Video made by Ana-Carolina’s parents to introduce her to pupils of Stella Maris school
Video / Supplied
She is the girl doctors said should be allowed to die naturally. Her parents couldn't accept that and, after five years in hospital, she went home.
Yesterday, Ana-Carolina, 6, officially became a schoolgirl.
Her parents Peter Bircham and Elane de Moraes Lobo chose Stella Maris school, close to the Ōrewa 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 from 5 to 9 for reading and painting.
The children introduced themselves, principal Alan Watts popped by to say hi, and one of the students, 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 for those about her age.
Ana-Carolina enjoyed the experience, de Moraes Lobo said. If she becomes stressed, her heart-rate rises and a monitor sounds a warning. Her heart rate remained calm throughout her visit.
"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."
Off to school: Ana-Carolina with her parents Peter Bircham and Elane de Moraes Lobo. Photo / Alex Burton
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 they were ready, willing and able.
"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 and her mother Elane de Moraes Lobo are welcomed by pupils of Stella Maris School. Photo / Alex Burton
Ana-Carolina's needs are extreme. She breathes through a ventilator - a tube in her throat connected to a machine which pumps air into and out of her lungs.
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 Ministry of Health.
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, said other children will be introduced gradually.
"The expectation is that Ana-Carolina 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 Ana-Carolina'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.
The rapid advance of her condition was extremely unusual, Bircham, her father said.
"She won the Lotto twice, the negative Lotto. She's a one-off."
Ana-Carolina during her stay in Starship children's hospital. Photo / Supplied
At one point, clinicians recommended the ventilator be turned off, allowing a natural death.
But that wasn't an option for Ana-Carolina's parents, who said she had the active and inquiring mind of any school-age child.
They gave up their jobs as a sales and marketing manager and project manager when Ana-Carolina 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 three-bedroom home in Ōrewa, 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.
July 4, 2013: Peter Bircham and Elane de Moraes Lobo welcome Ana-Carolina into the world. She seems happy and healthy. October 2013: Ana-Carolina rapidly loses the ability to move and starts struggling to breathe. She is admitted to Starship children's hospital and put on a ventilator and feeding tube. Her parents work in shifts so they can be with her 20 hours a day. August 2014: Intensive care clinicians at Starship recommend Bircham and de Moraes Lobo turn off their 15-month-old daughter's ventilator and allow her to die a "natural death". Her parents refuse, beginning a protracted battle with the Auckland DHB to be allowed to take their daughter home and keep her on a ventilator. March 2017: Starship starts actively working on a solution to get Ana-Carolina home. Mid-2017: Her parents - who have quit their jobs and taken out multiple loans so they can be with her - are forced to sell their Parnell house. March 2019: CCS Disability Action offers the parents a rental home in Ōrewa that will be suitable for Ana-Carolina's needs, although it will need some modifications. August 1, 2019: Ana Carolina, 6, comes home to her family's new rental in Ōrewa. Her parents say they are "not looking back". November 1, 2019: First day at school. "It means there is hope," her mother says.
