Hi, I had DNA testing done when I was about ten, I was in the original search for the problem which causes TCS. I nor my family (some of which also have TCS) heard anything about it after the enitial blood test.
Just under two years ago I discovered I was 8 weeks pregnant. The very first thing I did was arrange to see a genetic counsellor. There was a test I could have to see if my child had TCS but only if the TCS problem in my DNA had already been found. I went home bitterly dissapointed. Because all the DNA testing around the world looking for TCS did not have names to them for the sake of privacy. A week and a half later sitting in the consellors office she announced that a file that matched my family's description had been found. I had the test and Four gruelling weeks later I got the news that I already knew, I was having a child with TCS. This turned out to be the most reassuring news I ever got because from that day forth, nurses Doctors counsellors were all put on elert. Closer to my due date a trolly was set up and put aside for when I arrived to deal with any of my childs problems. I would suggest having it done if not for you then for your future children so they know. I have a happy healthy son who would probably have died if not for that posative test result.