Did you know in advance that you baby was affected?

First there's the 6 week wait for the post mortem results, then setting up meetings with geneticists, then getting blood tests and the results being sent OS - in our case a lab in Wales. The first round of testing took about 3 months after the local faffing around, but they needed to redo it due to our weird results. So it took 6 months.
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Hi Tashy. Thanks for your reply and I'm sorry to hear you are going through a hard time now after what you've already been through, so I really appreciate you writing to me. 'Hard' doesn't really cut it either, it's pretty much hell feeling like this.

I found out 4 days before my boy was born that he was affected. I went for a routine scan because I didn't want to be induced and so they just wanted to check on our boy. His heart beat was perfect but they found his huge kidneys, small bladder, couldnt' see his stomach and he had a large heart. The four days before he was born was hell. Not being able to sleep and then having to go through the birth. It was a beautiful experience nonetheless and we got to meet our boy and didn't have him whisked away for heroic efforts to try and save him, when we were given the worst possible prognosis. 'We have grave concerns for your baby' they told us. We held him and loved him as much as we could for 20 minutes and he passed very peacefully in my arms. I cannot begin to understand your grief of not having your baby with you when he died.

I have a question re: autopsy. Do they test baby's DNA at autopsy for the mutated genes? I thought this would make sense then it would speed up the process. I mean if they're going to say he died of ARPKD do they need to confirm that via DNA testing in order to make that statement? I'm really anxious about how much time everything is going to take as I'm 39 next month and we feel that somehow the only way to get over this grief is to have our next baby on the way.

Whereabouts in Australia are you? (I'm presuming you are in Oz.) I'm in Perth. I didn't realise testing woudl have to be conducted overseas. They had mentioned at the hospital that we would prob need testing, but they never mentioned anything about overseas labs doing it. I'm going to try my best to speed up the local process where possible, with geneticist appointments etc. and hope we get some good results asap. We are three weeks past our boy's birthdate now, so hopefully it's only another 3 weeks for the p.m. results.

Thanks for chatting and much love to you in these difficult times. I hope your baby's condition doesn't mean the worst outcome and I send you my well-wishes.