Good News
On Friday we finally had some good news. I guess any news is good compared to being told there is nothing that can be done to save your daughter and you should take her home to die.
It is true that there is very little that can be done to save Aria. The only way that she will live long term is if she receives a small bowel transplant. An operation that is not done in NZ or Australia and that will cost $US1-2 million dollars. Yes you read correctly and no it isn’t a typo, I did mean to type US. We obviously don’t have this money and will need to convince the govt to fund the operation.
Over the past week we have had two doctors try to convince us that letting Aria go was the best thing. ‘You can have another baby’ and ‘it will be really hard on you’. Aria can survive at home on IV fluids and nutrients (TPN). It will be incrediably hard on Hamish and I as she will be on these 24 hours a day. There is a possibility she will die of liver failure as TPN messes with your liver. Some people survive 3 months on TPN others 15 years. So she may or may not make it to the transplant op should we get the funding.
There is a huge, scary and exciting challenge ahead of us. It blows my mind. We love our baby and we can’t take her food away and let her die just because it will make our lives easier. Losing a child isn’t an easy thing and living with the guilt that there may of been a chance to save her would be just as terrible.
So we are going to trust in God! Aria’s life is in his hands not ours. Should he choose to take her before the operation then we will accept that and grieve for her. Should he choose to fund the operation then we will go, that amount is no issue to God.
All I can say is ‘Watch this space’
To our friends and family: We are so grateful for your support. Please don’t pity us. Aria is a gift from God and we are grateful to receive her. All of her completely.
38 Responses to “Good News”
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Links
- Hirschsprung’s disease
From Wikipedia, the free encyclopedia - Starship Children’s Health
The hospital that takes great care of Aria - The Kids Foundation of NZ
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