New PVL dignosis — Scope | Disability forum
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New PVL dignosis

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annbann
annbann Community member Posts: 1 Listener
in Start here and say hello!
My Grandaughter was born at 30 weeks and yesterday at 35 weeks was diagnosed with PVL. The family is of course devastated, especially my daughter and her husband. They are in the early grieving stage, the future is unknown and frightening . I am doing my best to support them but I would appreciate any advice and encouragement you can offer. I have been telling them that  they won't always feel this bad, that she will be the light of their life and will bring them so much joy. 
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  • Richard_Scope
    Richard_Scope Posts: 3,650 Scope online community team
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    Hi @annbann
    Thanks for your post and welcome to our community.
    Receiving a diagnosis can cause a range of emotions. From relief to being listened to and getting a diagnosis, to as you rightly say, a form of grieving. I'm going to include some information that I think will help.

    PVL Information
    New diagnosis so many questions


    We are always here to talk and offer support so please keep in touch.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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