Panorama in: XXX Girl

[mathlete]

Hi All!

I managed to find my way over from the dark side.  My Panorama test results came back and our LO is showing up as a possible XXX.  We've already talked to a genetic counselor and have decided to wait until she is born to have her tested (didn't want to risk an amnio).  Does anyone have a daughter with this syndrome?  Do you have any good resources for us to read up on?  I've read a *number* of scientific articles but was looking for some more practical information for after the birth (things to be on the lookout for).  From what we've read it looks like even if she tests positive it could have minimal impact on her life (that's why we're not majorly stressing at this point).  

Thanks! 

[tiamiaxx]

Congrats on a little girl! Sorry, I have no advice but hope you find everything you need and am glad it's not looking too serious.

[mathlete]

Thanks @justinslovo and tiamiaxx. I guess you can never really be prepared for this even after reading some pregnancy books. Otherwise though she's very healthy and on track with her measurements so we're just gonna do some research and try to be the best parents we can be for her.

[cookiesandwine]

Congrats on a baby girl! I'm sorry you're facing some uncertainty though. No advice, but it sounds like you're ready and have a positive attitude. Your sweet girl is lucky to have you

[junebug0611]

Congrats! I hadn't heard of this so I did some quick google research and was happy to see, as you say, that it doesn't look like it will be too serious -- maybe just a few bumps you will navigate gracefully. I hope your doc is able to connect you with resources and people to talk to so you know even better what to expect and are fully prepared (as well prepared as any of us ever are!). Congrats again on your precious baby girl!!

[mathlete]

@junebug0611 - My doctor has never had a patient with this before so she told me in all honesty she didn't know anything about it. That's why she referred me to the genetic counselor. There's nothing to do pre-pregnancy so there's no need for me to see a specialist. I'm guessing we should look for a pediatrician who has dealt with this before but I'm not sure how to go about that (We'll probably start by calling the insurance company and seeing if they have recommendations). Of course, she might not even have it, so we'll cross that bridge when we get to it.

[Tgrrl]

Congrats on your baby girl! I don't have any personal experience, but recommend searching for support groups or even blogs. A lot of times other parents can be your greatest resource. Good luck on your journey, sounds like you're doing all the right things, that babe is so lucky to have a momma like you!

[cch24]

Sorry I have no advice but congrats on your baby girl! T&Ps go out to you and your SO. FX that you have a great genetic counselor who helps you learn more about this. GL and ((hugs))

[ahsile]

No advice but I've heard some girls dont even know until they're adults.

Also, there is a found out the sex clicky poll somewhere on here if you haven't hit that yp yet!

Congratulations on the baby girl!

[decembergirl1216]

Congrats on your daughter! I hope that you are able to get some helpful information on the condition from the genetic counselor.

[ncjulia12]

Congrats on your little girl! No experience, but I'm sure it will be fine either way. You are a great mama to already be thinking and planning ahead.

[LydiaDeetz]

Congrats on your baby girl and FX you get some helpful information soon! Sounds like you guys have a great start on being awesome parents!

[mathlete]

Thank you everyone for the thoughts and support! We've done a lot of research in the science journals and are looking for some more common knowledge now (i.e. meeting real people, looking into practical therapy options). It looks like most of the support groups are in NYC which is a pretty big hike for us (NW NJ). But we have plenty of time to sort all that out.

[emeraldeyed315]

No advice but congrats on the baby girl!