Good or Bad??

[vancesmommy]

Well I just got off the phone with our genetics counselor and I don't know if it is good news or bad. I guess it more good, but frustrating! It turns out there is no test they can do to determine if Vance has C or C like syndrome. They still want us to have an ultrasound done on his kidneys and once he has those results he will make a decision on whether he thinks he has one of these. I guess these are both very rare and the reason why he thinks Vance has one of them is because of all his "dysmorphic" features. I really hate that word! If he decides that he has it, he will sit down with us and explain what the future may hold. It seems his would be a mild case though because mentally he doesn't seem behind and he is reaching all of his milestones. He could have low muscle tone, (which I am pretty sure he does) and he will be a little shorter than his peers. (I don't see that as being a big deal, as most people aren't the same height anyway!) She said the likely hood of us having another baby with this syndrome is very slim. Statistically 25% of having another with it and 75% of a healthy baby. Unless they come up with a test to diagnose it, we may never have a for sure answer! I like having the facts, so this "guessing" thing is going to drive me crazy!! Oh well, It could be worse.

[Jennifer]

How frustrasting. I totally understand how- YES, he has it or NO, he doesn't have it would be much easier than- Well, maybe he has it- we're not sure!

What is C syndrome? Do you know anything about it yet?

Huggs to you!

[verdon2]

What a shame!!! All that time an still no answers. Just pray for the best and stay optimistic.....

[vancesmommy]

I don't really know much about it. I have done some research, but all I can find is a list of the symptoms. Most of what I have read says it is usually includes mental retardation, but I don't think that is an issue with Vance. The counselor said she would better explain it to me at our next visit. The good thing is that she said it is a recessive (sp?) trait, and that both parents have to pass it on for the child to get it. So hopefully that means he won't have to worry anymore than everyone else about passing it on to his children. I guess I better get use to hearing "we'll have to wait and see".