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sj4iy t1_jazjjdc wrote

Reply to comment by TheWayOfTheLeaf in ‘0% chance of survival’: World’s most premature twins record broken by blackchristopher

I think it’s something that should be less taboo to talk about. There’s a reluctance in the medical community to talk about palliative care or hospice for infants, but it’s important for parents to be knowledgeable about all treatment options as well as alternative options. Palliative care should not be treated as “the last resort”.

I’m really glad your children are doing well. My son was not premature, but he does have mild disabilities…and even then it can be overwhelming.

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TheWayOfTheLeaf t1_jb0n7gk wrote

Yes I agree. In my experience, from the outside looking in people only see the survival. I have PTSD from everything we went through but all I ever hear is oh look how good they're doing now! You guys made it! And yeah I'm grateful and I adore my children. But this has been an uphill battle for all of us, it's not over, and it's like we aren't supposed to acknowledge that at all. Just shut up and be happy they lived. I am, but it's still fucking hard.

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