HIE baby

[littlepiggie]

My ds is currently 6w old and suffered HIE (hypoxic-ischemic encephalopathy) at birth. He had cooling and is doing far better than anyone thought, though he does have a brain injury. Is there anyone that has been through this and could offer any advice/support as I don't know anyone in rl that has.

I know an older child whose disabilities were as a result of HIE, but the spectrum of difficulties HIE can cause is very wide and varies from child to child. SCOPE may be able to help you as some children do develop forms of cerebral palsy so they have experience of HIE babies. They have support workers and can link you to other families.
www.scope.org.uk/help-and-information
Special Kids in the UK forum also has families with young children with brain injuries and are a very friendly forum and source of information/stories of their children - www.specialkidsintheuk.org/forum/forum.php
The BLISS forum for babies who have been in Special Care/had difficulties is also a good source for finding families with babies who have had similar experiences - www.bliss.org.uk/help-for-families/

Hope this helps

There's also a cerebral palsey thread on here full of lovely helpful people.

There is a facebook page called 'hope for HIE' They are very supportive. A mix of US and UK parents. My grandson suffered a HIE at birth and has cerebral palsy but he wasnt cooled, so that is a massive advantage for you.

Thanks :) do you have a link to the thread?
Will look for the fb page and the other links.
I feel incredibly lucky that he had cooking, he really wouldn't have stood much chance without it as he was classed as severe at birth.