Hi Och,
like you say, the NTscan is only for the detection for higher risk of Down's. It does not detect any other genetic abnormalities. I have consulted countless doctors in different specialties on this.
Therefore, my risk is by no means "speculative based on previous kids" simply because I cleared the NTscan. If anything, my risks of having another baby with the same genetic condition as my second child is much higher. Because there is no way of measuring my risk level without doing doing genetic testing of my second child and then based on that result, perform a cvs or amnio. Which we have chosen not to do.
Therefore in my case, clearing the ntscan or detailed scan at 20 weeks doesn't mean anything. Nor should you say that my risk is non-existent or speculative. The current test is simply unable to test for anything besides Downs. So my risk is low ONLY for Down's. Not any other condition. And especially not for my second child's genetic condition. It is so uncommon that even though my gynae and maternal fetal specialist have at least 50 years of experience between them they have not come across a similar case at all.
Whereas in Chevelle's case, it is very clear that her nt results are not ideal, and it is also fairly clear that they are at higher risk of having a baby with Down's since nt tests for Downs and Down's only. That being the case, if they can accept it, my point was that there is not much point in doing further testing due to the risk of miscarriage.
As for using patient data for medical research, we signed a disclosure form in the Swiss hospital allowing them to use my child's info for their publications. I have no doubt that we would be asked to do so over here too, if we had gone ahead with the tests. You weren't there to see the specialist's eyes light up with interest and excitement when she heard that one of my child has a rare genetic condition, and she immediately suggested escalating my pregnancy so that I'm under the care of their specialist team. They would not have done so if there were no grounds to consider mine a high risk case.
Anyway like you said, we're here to share experiences and our thoughts; not to pick a fight =)
My personal axe to grind is with the local healthcare system, which only covers the healthy population and leaves all those needy, disabled, ill, and born less than completely healthy in the lurch. I would gladly pay higher taxes or insurance costs to have a system like Switzerland's; where my child received the best medical care possible during her nearly 2 months's stay in the NICU and we didn't have to pay a single cent, only the insurance premiums. Somemore we were not even residents there, my husband only had a student permit. But we received the best care nonetheless.
Now our only wish is to be able to migrate to Europe someday, so that my kids will be covered for everything and not have to worry about medical treatment costs.