Intraventricular hemorrhage anybody?

Hi all I've just joined and introducing myself I'm an incredibly lucky mum to two amazing 3 year old identical twin boys who unfortunately both suffered brain hemorrhages at birth, been a long journey to where they are now but I have very high hopes for them in spite of the huge challenges still ahead! Hoping to connect with others affected by similar challenges ☺

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  • Hi twin mummy.

    Your little ones have been through so much but you sound like a strong mummy, loving them to bits.

    On here it is mostly adults with acquired brain injuries or people caring for their children or a partner who have a brain injury but not from birth. I am wondering if you would find more help and other parents with similar situations to yours with the Child Brain Injury Trust - wwwchildbraininjurytrust.org.uk

    Best wishes

  • Yeah think you're right probably more adults here, I thought there might be parents on here but maybe children's trust is where most are, thanks ☺ have to say can still relate to alot of what people say here though as brain injury effects are present regardless of being one year old or 100 years old and it's interesting to see longterm what my kids may face 👍

  • You are so right in saying that brain injury can affect anyone similarly regardless of age. However, I am not aware of any parents on here that have little ones that had bleeds at birth. I think you are right with trying to link with parents in a similar situation as your little ones which is why I suggested the Child brain injury trust.

  • ❤ thank you

  • Oh no, so sorry to hear about your boys Twinmummy. I was in danger of a ventricular haemorrhage at age 14. They caught it just in time luckily for me. I have had a VP shunt since. Do your boys have this?

  • ps I was born with my problems but they didn't present until puberty.

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