Page 3 of 3 < 1 2 3
Topic Options
#10373 - 01/22/05 12:39 AM Re: Just got x-linked diagnosis
lisat Offline

Registered: 01/05/05
Posts: 61
Loc: Encinitas, CA, USA
Is the triple screen always a state run program? I only know that it is in California.

Just got my results back - I'm a carrier for XLI. The genetics counselor called and said "I have good news - you do have the deletion for STS" I had to laugh - it seems odd to hear "I have good news" and "you have a deletion on the X chromosome" in the same sentence!! I guess he only meant that it explains my estriol results and confirms the baby's diagnosis definitively. . . .


#10374 - 01/22/05 05:50 PM Re: Just got x-linked diagnosis
threerxli Offline

Registered: 01/14/03
Posts: 515
Loc: virginia
I was the happiest person alive to find out that I was a carrier for xli. It is strange, but compared to the other problems that my babies could have had,and the fear of what the doctors were telling me, XLI being cosmetic for the most part seemed so minor. About your question, the "state run program". This is what I know. When I lived in North Carolina and had my second son, it was state run. Mostly to have doctors let parents know about abnormal test results and push for pregnancy termination, so that the state had less people to pay for, as far as disability goes. I have a copy of this "new" policy somewhere on file. It made me sick to my stomach to read it. I am very mixed on my feelings. I am prochoice, but I also believe that parents should receive facts about the test results. I also believe that having the testing helps a parent to prepare to help their child at birth, and come to terms with anything found before the child is born. I know that had my sons had downs syndrome, I would have found out as much as possible to have doctors and medical staff ready. I would have used the information to give my child the best life and education possible. The point I have is that parents should have the choice to have the testing AND the correct information to make their decisions. Somewhere in this medical mess, there is a huge gap.
By the way, congrats on the XLI carrier status. SMILE

Page 3 of 3 < 1 2 3

Moderator:  marcsmom, Sideshow_bob 

Copyright 2012 Ichthyosis Information