2006 June - Aria MacDonald

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.

She has been diagnosed with total Hirschsprungs disease. An extremely rare version of the condition, normally you can operate to fix. This means that from her tummy to her rectum does not function and is ‘not compatible with life’ as the doctors seem to say.

She is still with us and we are of course looking into absolutely every possibility that she might be saved. We are praying to our God for a miracle and looking to Him for strength at the time.

We are praying as King David did in 2 Sam 12. Please pray with us and we are grateful to anyone who will pray for us. God can do great things.

Thanks to those that have supported us and visited. We need all the help and encouragement we can get.

I am home very briefly for a much needed rest, thanks to my wonderful midwife. I thought I would give you this update.

Aria Evelyn Pearl MacDonald was born on Saturday arvo at 1.40 weighing in at 8lbs. She is very beautiful and a blessing above. Unfortunately since the next day after her birth she has been at Starship with something wrong with her digestive system. 5 days on we are still waiting for a diagonsis.

Our hearts are heavy and we are struggling in this difficult situation, Please pray for us and our baby.

Thanks to those who have texted and called. You don’t know how much your kindness means.