Isabella Hope - Medical Care in Brisbane
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Our Isabella Hope was born at 29 weeks, weighing little more than a bag of carrots. She had a very large and aggressive tumour, a saccrocoxxygeal teratoma, that was bigger than she was.
We learned we were expecting our first baby this time last year. At our 20 week scan we were told that our baby had a rare, aggressive tumour and most likely would not survive. We were given three options, to terminate, that our baby wouldn’t survive inutero, or that she might survive the birth but go into palliative care soon after. It was a horrific situation.
We chose to continue with the pregnancy, gathering friends and family to pray for us and our unborn baby. We asked God for a miracle.
At 28 weeks my waters broke, I managed to hang on a few days but eventually had to have an emergency C-section. I gave birth to a beautiful baby girl with a tumour that was bigger than she was. We had been sent from Mt Isa to Brisbane as they were not equipped to deal with our high risk and complicated pregnancy. Had we been in Mt Isa we have been told that she would not have survived.
Isabella Hope was only a few hours old when she went into a five hour surgery to remove the tumour.
At the end of the surgery our baby girl suffered a cardiac arrest and was resuscitated for 45 minutes. The surgical team arrived to tell my husband and I that they had lost our precious girl during the surgery.
The utter agony and devastation thankfully was short lived as another doctor came running in to tell us that they had managed to get a heartbeat. We then spent three long months in the Neonatal Intensive Care with Isabella, both my husband and I away from home.
Since returning to Mt Isa we have formed good partnerships with the local hospital, and we all thought that we could manage Isabella’s medical needs while continuing to live in Mt Isa. She requires frequent, regular trips back to the Queensland Children’s Hospital for visits with the many specialists that look after her.
Our last visit to QCH in Brisbane prompted discussions with our specialists regarding Isabella’s future care and whether that future care can be done from Mt Isa.
We are yet to find out the extent of Isabella’s medical needs as she is still only a baby. She has complex medical issues arising from the tumour as well as being born so prematurely.
At the moment I am currently in Brisbane at the Queensland Children’s Hospital with Isabella as she is unwell and requires surgery. It is difficult without Richard being here.
It has become clear to us that we need to return to Brisbane permanently to access care from Queensland Children’s Hospital, as well as their allied health providers. Isabella will require intensive early intervention to enable her to be mobile and walk. We anticipate regular paediatric appointments as well as physiotherapy, occupational therapy, dieticians, speech therapy, aqua therapy, just to name a few.
Moving from Mt Isa to Brisbane is extremely costly and to put it plain and simply we do not have the funds for such a move.
For many reasons I am not in a position to return to work as planned.
We have many friends and family who have supported us in the past and we are so grateful for the help we have received.
Asking for help in this way is hard. Very hard, no one likes to admit that things are tough. If you can help, even in a small way, we would be so thankful. Every little bit counts.
Thank you for loving our Isabella Hope, we believe she is a miracle from God.
https://m.facebook.com/groups/191477641679584?ref=share
We learned we were expecting our first baby this time last year. At our 20 week scan we were told that our baby had a rare, aggressive tumour and most likely would not survive. We were given three options, to terminate, that our baby wouldn’t survive inutero, or that she might survive the birth but go into palliative care soon after. It was a horrific situation.
We chose to continue with the pregnancy, gathering friends and family to pray for us and our unborn baby. We asked God for a miracle.
At 28 weeks my waters broke, I managed to hang on a few days but eventually had to have an emergency C-section. I gave birth to a beautiful baby girl with a tumour that was bigger than she was. We had been sent from Mt Isa to Brisbane as they were not equipped to deal with our high risk and complicated pregnancy. Had we been in Mt Isa we have been told that she would not have survived.
Isabella Hope was only a few hours old when she went into a five hour surgery to remove the tumour.
At the end of the surgery our baby girl suffered a cardiac arrest and was resuscitated for 45 minutes. The surgical team arrived to tell my husband and I that they had lost our precious girl during the surgery.
The utter agony and devastation thankfully was short lived as another doctor came running in to tell us that they had managed to get a heartbeat. We then spent three long months in the Neonatal Intensive Care with Isabella, both my husband and I away from home.
Since returning to Mt Isa we have formed good partnerships with the local hospital, and we all thought that we could manage Isabella’s medical needs while continuing to live in Mt Isa. She requires frequent, regular trips back to the Queensland Children’s Hospital for visits with the many specialists that look after her.
Our last visit to QCH in Brisbane prompted discussions with our specialists regarding Isabella’s future care and whether that future care can be done from Mt Isa.
We are yet to find out the extent of Isabella’s medical needs as she is still only a baby. She has complex medical issues arising from the tumour as well as being born so prematurely.
At the moment I am currently in Brisbane at the Queensland Children’s Hospital with Isabella as she is unwell and requires surgery. It is difficult without Richard being here.
It has become clear to us that we need to return to Brisbane permanently to access care from Queensland Children’s Hospital, as well as their allied health providers. Isabella will require intensive early intervention to enable her to be mobile and walk. We anticipate regular paediatric appointments as well as physiotherapy, occupational therapy, dieticians, speech therapy, aqua therapy, just to name a few.
Moving from Mt Isa to Brisbane is extremely costly and to put it plain and simply we do not have the funds for such a move.
For many reasons I am not in a position to return to work as planned.
We have many friends and family who have supported us in the past and we are so grateful for the help we have received.
Asking for help in this way is hard. Very hard, no one likes to admit that things are tough. If you can help, even in a small way, we would be so thankful. Every little bit counts.
Thank you for loving our Isabella Hope, we believe she is a miracle from God.
https://m.facebook.com/groups/191477641679584?ref=share
Organizer
Bec Schwenk
Organizer
Ranken, NT