Kayban Jamshaad has been fighting for his life from the moment he was born.
His birth by caesarean section at Bunbury Hospital in Western Australia on July 2016, saw him flown to Perth for emergency surgery only a few days later.
Kayban was diagnosed with severe haemophilia and an acquired brain injury caused by forceps during delivery, which resulted in an intracranial haemorrhage.
His parents, Shizleen and Ahmed, say they were advised to turn off Kayban’s life support before he was even a week old, as doctors did not believe he would survive.
“I was told Kayban would die, that the machine was keeping him breathing, that he was doing nothing on his own apart from being in pain,” Shizleen told SBS News from their home in Bunbury.
“So we decided to switch off his life support because we didn’t want him to suffer any more.”
We decided to switch off his life support because we didn’t want him to suffer any more.
– Shizleen, Kayban’s mother
But having lived through his own traumatic birth, Kayban set about defying doctors’ expectations.
He survived a day-and-a-half on his own without life support, before he was given a second chance at life.
“I was asking the doctors, ‘what is happening?’ They told me he would pass within hours,” Shizleen said.
“We held him for two days and he refused to go. His vitals kept going up, he improved and that’s when they decided to put him back on life support”.
Life in Australia
At the time of Kayban’s birth, Shizleen and Ahmed say they were planning to leave Australia with their other two other children, Khaalil, now 11, and Kyara, 5.
The couple had moved to Western Australia from the Maldives in January 2013, after Shizleen accepted an AusAID scholarship to study social work in Bunbury.
“We had been away for four years and we were planning to move back,” she said.
“But the realisation for us was that our lives had changed. I remember sitting in the ICU room, looking at Ahmed saying, ‘we can’t take him home, we can’t do that to him because there wouldn’t be services there to support him’.
Now three years old, Kayban requires round the clock care and a range of specialised treatments.
He receives routine prophylaxis (preventative healthcare) for his haemophilia, administered weekly at Bunbury Hospital. He is also seen on a six-monthly basis at Perth’s Children’s Hospital and takes seizure medications twice daily.
Apart from the prophylaxis, which is provided by the Australian government to all residents and non-residents, Shizleen and Ahmed say they pay for all of Kayban’s treatment, either themselves or through their private health fund.
Kayban’s father is his full-time carer, while Shizleen is now employed as a social worker.
With full-time employment, Shizleen was sponsored by her employer to apply for a Temporary Skill Shortage visa to stay in Australia, with her husband and three children listed as dependents.
But on the 10 December last year, she received a letter from the Department of Home Affairs saying all of her family members had been approved for a temporary visa.
All except for Kayban.
All of her family members had been approved for a visa. All except for Kayban.
“I cried, of course. Once you’ve been rejected, you have the choice of going through an appeal process or accepting the decision,” Shizleen said.
“So then it became a race to make sure we lodged an appeal so he could stay in the country legally”.
The department said Kayban’s visa application was not successful because it didn’t meet the requirements of the Migration Act.
“The Act says that a visa applicant’s health care costs must not exceed a certain threshold, which is currently $49,000 over the period of a temporary visa,” migration agent and disability specialist Dr Jan Gothard told SBS News.
The rejection letter also stated that Kayban’s application did not warrant a waiver on compassionate grounds.
Critics of Australia’s Migration Act argue the cost evaluation unfairly discriminate against visa applicants with a disability.
“It is discriminatory if you consider that an able child applying for a visa, their costs for education are not considered to be a cost to the Australian community,” Dr Gothard said.
“But if a child goes to a school and needs special education, that is considered to be a community cost. It is clearly discriminatory.”
This week, SBS News revealed from 1 July, visa applicants with permanent medical conditions or disabilities will no longer be assessed in terms of their lifetime care cost, and that the cap had been increased from $40,000 to $49,000.
But in Kayban’s unique circumstances, the lines become even murkier.
Dr Gothard says as a temporary visa applicant, Kayban would not be able to access the services that his application has been costed for.
“The issue is Kayban is not applying to become a permanent resident,” Dr Gothard says.
“As a temporary visa applicant, he’s simply not eligible to access state disability services.
“When it comes to the exercise of the waiver, that is based on whether the costs can actually accrue. And in Kayban’s case, it is perfectly clear that the costs which have been attributed to him cannot accrue, therefore the waiver should be granted.”
‘He won’t survive’
A spokesperson from the Department of Home Affairs said it would not comment on Kayban’s case, but said its processes do not discriminate against applicants who have a disability.
“The existing requirements of the Migration Act are in place to protect the community from public health and safety risks, contain public expenditure on health care and community services, and safeguard the access of Australian citizens and permanent residents to health care and community services in short supply,” the spokesperson said.
“The current migration health framework is pragmatic and balances compassion and cost containment by having a standard health requirement for visa applicants while making health waivers available for some visas and, where appropriate, ministerial intervention.”
As part of Kayban’s application for a visa, the department was provided letters from multiple medical experts who agreed on the quality of care for haemophilia patients in the Maldives was insufficient.
The warnings suggested a risk of Kayban developing severe contractures, scoliosis, pain, osteoporosis, with a high risk of pathological fractures, hip dislocation, malnutrition, respiratory failure and premature death.
“We cannot access the care he requires back home in the Maldives and the consequence of this would be losing our child,” Shizleen wrote in her son’s application.
“The reason we don’t want to take him is not that his quality of life might be affected but because there is a high chance he won’t survive.”
Last chance appeal
A review of the decision not to grant Kayban a Temporary Skill Shortage (Class GK) visa will be heard at the Administrative Appeals Tribunal in Perth on 29 August.
During that hearing, Shizleen and Ahmed will be asked to give evidence and present their reasons why Kayban should be allowed to stay.
If that fails, the family will have 28 days to pursue their last resort – a direct appeal to the minister for immigration to intervene.
“There is no requirement for the minister to intervene. It’s really at the behest of the minister whether he chooses to intervene or not,” Dr Gothard says.
“When you apply for ministerial intervention, it doesn’t go directly to the minister’s desk, it goes to the ministerial intervention team. And they will assess and decide whether they think the minister might be interested in intervening or not.
“Not every application is going to end up on the minister’s desk. In fact, very few do.”
While it’s not clear what Kayban’s life expectancy is, doctors say that with regular specialist medical intervention he may one day use his upper limbs, communicate with his family and take steps with a walking frame.
“This is a human being that we’re talking about, an actual person. It’s not a piece of paper. It’s not a number,” Shizleen said.
“I’ve personally not liked having to come out to the public about it, but unfortunately people need to know that this is what happens when we don’t fit into boxes and not all of us do.”
The couple has a strong support network of friends in Bunbury and this weekend, a ‘Save Kayban’ public march will be held in the town to raise awareness of his case.
“It actually shouldn’t have reached this stage,” Shizleen said.
“I know if we take him home, we would be living in that fear that he’s going to die. But, if he’s here, we can enjoy the time we have with him as a family.”
“We know he’s being looked after. His needs are being met. That he’s not in pain, that he’s just being a little boy.
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