Hi it’s Patrik Hutzel from INTENSIVE CARE AT HOME where we provide tailor made solutions for long-term ventilated Adults & Children with Tracheostomies by improving their Quality of life and where we also provide tailor made solutions to hospitals and Intensive Care Units to save money and resources, whilst providing Quality Care!
In the last blog I shared
You can check out last week’s blog here!
In this week’s blog I want to share Ana-Carolina’s and her parents Peter and Elaine’s story
The little girl trapped between hospital and home
Ana-Carolina is four year’s old and has spent the last three and a half years in PICU on a ventilator with a tracheostomy!
Her parents have been by her side most of the time and they are finally getting some media exposure to get their little daughter home, instead of staying in PICU.
So far the cost has been $1.6 Million per year and care could have been provided at home already for half of the cost.
Plus Ana-Carolina and her parents would have been at home by now!
Have a look for yourself and see some recent media coverage about their story.
Peter Bircham is in a stand-off with the Auckland District Health Board over how to best look after his four-year-old daughter, Ana-Carolina, who has lived in Starship Hospital’s intensive care unit since she was five months old.
It costs $1.6 million each year to keep Ana-Carolina alive at Starship, as she is dependent on a ventilator to breath and unable to move on her own.
But Peter Bircham says the intensive care unit is no place to grow up.
“A very draining place. There’s bright lights on quite often 24 hours a day,” he said.
“There can be surgeries performed within metres of us. Children die there every week. There’s no window to the outside world, there’s artificial light around. And it’s not really a place to grow up.”
If Ana-Carolina was brought home to live she would need a ventilator at home, and round the clock care.
But Auckland DHB Chief Medical Officer, Dr Margaret Wilsher, said they are committed to getting Ana Carolina home eventually, but more planning is needed.
“Our hope is that her parents will continue to work with us to develop and implement a plan that will see Ana-Carolina eventually return home to the care of her parents in a well-supported environment,” Dr Wilsher said.
The parents of a 4-year-old at odds about the way forward: ‘Please let our girl come home’
The parents of a 4-year-old, who can neither breathe without help nor move, and the hospital system that cares for her, are at odds about the way forward, writes David Fisher.
From her bed in Starship hospital, Ana-Carolina sees little but hears much.
At the age of 4, her world is limited and her brain is trapped by her body. She cannot move and her lungs work only with the help of a mechanical pump.
At most, she can move her eyelids, has minimal facial expression and sometimes can twitch her fingers.
Since she was 5 months old, Ana-Carolina has lived in the Paediatric Intensive Care Unit of Starship hospital in Auckland.
She has always shared a room, not with a brother or sister, but with three others who come and go. Some get well and leave. Others die; possibly as many as 50 of those who have shared a room with Ana-Carolina never left hospital alive.
Her’s is a room without windows to the world. In 2014, when she was 15 months old and it was clear she would never get better, Starship doctors told her parents it was their unanimous professional opinion that care should focus on “comfort measures and allowing natural death”.
But Peter Bircham and Elane de Moraes Lobo wanted more than death for their daughter. They want to bring her home to live with them, but have been frustrated by an apparent missing link in New Zealand healthcare. There is no adequate framework — financial or medical — for that to happen.
The parents, however, are not blameless. The hospital also says Ana-Carolina should be at home but argues the parents themselves have put up roadblocks in a long-running feud.
It is a fraught situation pitting the processes and bureaucracy of a multimillion-dollar system at war with the emotions of loving parents.
And that has left a little girl in limbo.
What do you think? Where do you think Ana-Carolina should be cared for, in PICU or at home? Leave your comments on the blog.
If you want to find out how we can help you to get your loved one out of Intensive Care or Long-term acute care (also nursing home) or if you find that you have insufficient support for your loved one at home on a ventilator or if you have any questions please send me an email to [email protected] or call on one of the numbers below.
Australia/New Zealand +61 41 094 2230
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UK/Ireland +44 118 324 3018
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We are an NDIS, TAC(Victoria) and DVA(Department of Veteran affairs) approved community service provider in Australia.
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Thank you for tuning into this week’s blog.
This is Patrik Hutzel from INTENSIVE CARE AT HOME and I see you again next week in another update!