Sad news again

January 31, 2011 at 10:03 pm 2 comments

A baby passed away last week from ARPKD an hour after she was born. She was given no hope for survival before being born. That frustrates me too. I also found out last week about a baby who died recently when she was five days old from ARPKD. She was on a ventilator and not urinating so the doctors told the parents to take her off of the ventilator and she passed away.

I am concerned with the lack of hope these doctors have and with their possible lack of information about this disease. I feel like it’s been more than 30% lately and that makes me really sad.


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Monday Memories Hard week

2 Comments Add your own

  • 1. naomi  |  February 1, 2011 at 5:37 pm

    I really think it’s a shame how the American healthcare system is failing people with this diagnosis. Our 1st fetal med dr informed us, yes, ellie could die but the maintenance of liquor and her lung volume gave us better chances and she could live too. We were offered ‘interuption’ twice which we turned down (how could you with 70% chance?) and since then it has been a case of what they will do when she comes, not ‘give up hope’. The NHS are a brilliant team, I wish the USA had that too.

  • 2. threepeas  |  February 4, 2011 at 10:05 pm

    Thanks Naomi,
    I do agree that I wish more doctors gave more hope. There are a lot of great doctors out there who do give hope all over the world. I’m not sure it is an overall thing that the American Healthcare system is failing. I just think there needs to be more education in general about ARPKD all over the world. I think you are lucky that you found such wonderful doctors who are educated and giving you hope!


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