Tell it Right, Start it Right Campaign

Please support the Down's Syndrome Association 'Tell It Right, Start It Right Campaign'. It promotes positive attitudes in NIPT. More information and the donation page can be found on the following link.

http://www.downs-syndrome.org.uk/about/campaigns/tell-it-right-start-it-right/

A parent’s recent experience of NIPT:

“Someone from the hospital called me on my mobile. At the time I was in my open plan office at work. She did not ask if I was OK to talk. Instead she just went straight to saying that the blood test had come back positive for Trisomy 21. At the time I couldn’t remember whether Down’s syndrome was Trisomy 21 or another of the Trisomies.
If someone is going to give such significant news over the phone, they should check that they are in a position to talk and that they have some privacy. I also think that plain English should have been used. Trisomy 21 may be the medical term but almost everyone knows the condition as Down’s syndrome and I can’t be the only person who wouldn’t understand what she was saying.
Once I found a private place I was able to confirm what the test results meant. I was then told that I should come in that afternoon for CVS or amnio (I can’t remember which it was I was offered) to confirm the finding and determine which twin was affected. I wasn’t asked if I actually wanted invasive testing and it wasn’t presented to me as an option. I was told I should do it and I should do it that afternoon. I told her I didn’t actually want invasive testing because of the risk to the babies. She described the risk as small, but couldn’t actually tell me what it was when dealing with twins. She was pretty pushy that I should come in.
I don’t believe there was any reason I had to come in that day. I assume most people would want more information sooner rather than later but I would have been fine having a couple of extra days to process the news. I am pro-choice but we had discussed it and already decided that if one of the babies had Down’s syndrome we wouldn’t want a termination. And even if I had wanted one, I was only 14 weeks along – there was enough time to spend a few days thinking about it before doing anything invasive”