Baby Daisy's Heart Surgery Costs
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Baby Daisy is needing open heart surgery to repair the associated defects due to a rare genetic connective tissue disorder only her, her brother and Mum are known to have. This is her story:
Daisy was born a fighter. She came into the world with the cord wrapped three times around her neck and tore her way out giving her mum a fourth degree tear and costing her 4.8 litres of blood (roughly 100%)
Her Mum and her older brother David both had to have a VSD (Ventricular Septal Defect) repair when they were only a few months old. This is due to a rare genetic connective tissue disorder unique to our family affecting the heart, eyes, muscles and joints. We thought we had lucked out with Daisy. That was until she went to get her 6 week old immunisations and the nurse at the clinic noticed enough warning signs to send her in an ambulance to the hospital. Daisy had a battery of tests run on her and an appointment with the paediatric cardiologist coming up from the Lady Cilento Children's Hospital in Brisbane to see her the next day. He diagnosed her with a ventricular septal defect and a small aortic septal defect. Surgery was scheduled for late August.
A week ago baby Daisy's condition worsened and a nasal gastric feeding tube was installed. Last Thursday night Daisy wasn't doing well so we took her back to the hospital. She is now being fed solely by a machine pumping formula into her nasal tube and we can't even pick her up. It is pretty heartbreaking. Having been through this to a lesser extent with her older brother so we have a fair idea of the challenges ahead which is why I know we will need help.
It takes a village to raise a child and all that.
Challenges: Travel costs and at least 2 weeks accommodation in Brisbane when Daisy has her heart surgery at Lady Cilento as early as the end of July. Hopefully we can get a spot at Ronald McDonald house for the first couple of days which would reduce the cost a little.
Prescription formula and Non-PBS (pharmaceutical benefits scheme) medication that we have to get compounded in a liquid form. She is currently on two different diuretics to reduce the fluid buildup around her lungs and heart.
Compounding services aren't cheap as we know from paying for her brothers ongoing heart condition (aortic dilation) medication getting his beta blockers compounded for the last 5 years and there is every reason to expect that she will be going onto the same beta blockers post surgery.
Associated costs for ongoing physio, occupational therapy and cardiac services. These therapies have been ongoing for years now for David so we can predict it will be the same for Daisy.
Any funds raised above what is needed for Daisy will donated to the Ronald Macdonald House and the Heart Kids Charity who were generously there for us with David's surgery and recovery.
My wife and I aren't the sort to beg, but when it's your children you'll do whatever it takes. As I said, it takes a village. It takes a village to save our child and I would be honoured if you chose to be a part of our village.
Daisy was born a fighter. She came into the world with the cord wrapped three times around her neck and tore her way out giving her mum a fourth degree tear and costing her 4.8 litres of blood (roughly 100%)
Her Mum and her older brother David both had to have a VSD (Ventricular Septal Defect) repair when they were only a few months old. This is due to a rare genetic connective tissue disorder unique to our family affecting the heart, eyes, muscles and joints. We thought we had lucked out with Daisy. That was until she went to get her 6 week old immunisations and the nurse at the clinic noticed enough warning signs to send her in an ambulance to the hospital. Daisy had a battery of tests run on her and an appointment with the paediatric cardiologist coming up from the Lady Cilento Children's Hospital in Brisbane to see her the next day. He diagnosed her with a ventricular septal defect and a small aortic septal defect. Surgery was scheduled for late August.
A week ago baby Daisy's condition worsened and a nasal gastric feeding tube was installed. Last Thursday night Daisy wasn't doing well so we took her back to the hospital. She is now being fed solely by a machine pumping formula into her nasal tube and we can't even pick her up. It is pretty heartbreaking. Having been through this to a lesser extent with her older brother so we have a fair idea of the challenges ahead which is why I know we will need help.
It takes a village to raise a child and all that.
Challenges: Travel costs and at least 2 weeks accommodation in Brisbane when Daisy has her heart surgery at Lady Cilento as early as the end of July. Hopefully we can get a spot at Ronald McDonald house for the first couple of days which would reduce the cost a little.
Prescription formula and Non-PBS (pharmaceutical benefits scheme) medication that we have to get compounded in a liquid form. She is currently on two different diuretics to reduce the fluid buildup around her lungs and heart.
Compounding services aren't cheap as we know from paying for her brothers ongoing heart condition (aortic dilation) medication getting his beta blockers compounded for the last 5 years and there is every reason to expect that she will be going onto the same beta blockers post surgery.
Associated costs for ongoing physio, occupational therapy and cardiac services. These therapies have been ongoing for years now for David so we can predict it will be the same for Daisy.
Any funds raised above what is needed for Daisy will donated to the Ronald Macdonald House and the Heart Kids Charity who were generously there for us with David's surgery and recovery.
My wife and I aren't the sort to beg, but when it's your children you'll do whatever it takes. As I said, it takes a village. It takes a village to save our child and I would be honoured if you chose to be a part of our village.
Organizer
Aidan Spittles
Organizer
Diddillibah QLD
