Interesting Links for 15-08-2015

[andrewducker]

• Father's 'Star Wars'-Themed Helmets Help His Infant Son Smile Through His First Year With Craniosynostosis
  • (tags: starwars babies healthcare viaSwampers )

Original post on Dreamwidth - there are

Comments

[gwendysmile]

It's "craniosyntosis".

I have this. It made my childhood very hard.

I would not have been happy if my parents started it off by posting pictures like these of me all over the Internet. Even less so now, when treatment has advanced so much that people might not know there was anything wrong with me otherwise.

When I was a kid they took bone from my rib to expand my skull: now kids are getting much less invasive "haloes", like braces for skull, over the summer. or customised 3d printed skull plates.

They caught this so early that the kid is going to do great, and then they plastered it all over the Internet. Ugh.

[andrewducker]

Possibly they don't see it as anything to be embarassed about?

[gwendysmile]

Maybe, and that's great for them, but they don't have it. It's the kid who has to attend school and try to make friends and maybe eventually date people. And who has to deal with the Goddamn Internet.

Search reddit for "crouzon syndrome" and see how much respect they have for my particular flavor of craniosyntosis.

How lucky for baby that his parents don't think it's embarrassing.

[gwendysmile]

I mean, obviously I'm bitter, and I think it would be kinder on most of us to have been aborted. But even then, it's a crappy decision for the parents to make for their kid when he can't consent to having his pictures plastered all over the internet for "awwww look how adorable this little ill baby is"