Backstory: I have binders syndrome. It's a rare syndrome where I was born with a flat nose, operated on at 6 months, 4 years, 17 years and 22 years. I endured a decade of children asking their parents what was wrong with my face, endured taunts of flat nose, ugly, low self confidence etc...
At 17 I became normal. not hot but normal. I mean it. That surgeon BUILT me my own nasal passages, and gave me a nose. Suddenly guys were asking me out and I was getting wolf whistles not jeering from guys my age.
So where am I getting to...
When I was diagnosed at 14, (FINALLY...) the initial plastic surgeon my doctor referred me had a diagnosis before we'd even sat down in his chair. He said to my mum "She's clearly got binders syndrome... and so have you"
I dunno why I thought to do some more research on this today, I was bored... and we've been TTC since august so i thought maybe it was a contributing factor or something.
Some of my searching has turned up that ultrasonographers can now diagnose this in the womb. Which is great because it means that chances are I won't be told "Don't worry, the nose takes a while to come back after birth" like my mother was told about me... It also means if I have a baby and it screams for two weeks straight or just holds its breath for no reason; I know there's a real possibility they don't have proper nasal passages (like me)
The downside is I'm disturbed by some of the opinions I've found on the net. Whilst I know that every doctor is different, every country is different, I've read a lot of advice today that SOME doctors are encouraging mothers pregnant with babies with binders syndrome to terminate.
Apparently my syndrome can "cause mild mental retardation"
In my family that's a load of bull!!! My mother was due of her school and I got a high OP and Uni degree... plus a research paper to my name.
What should I do? It's INCREDIBLY likely I'm going to pass this syndrome down (Mum has it, I have it...)
we're not pregnant yet, but apparently the 2D ultrasound can diagnose (3D is then prescribed to confirm)
the research I've done today says apparently familial cases of this disease are rare but the fact that I can remember the surgeon telling my mother she had it too tells me that in my case it's familial and I'll probably hand it down...
Has anyone done genetic counselling before? Should I just wait until I get pregnant or do something about it now... Should I do anything about this at all???
Am I freaking over nothing??