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Could the initial CVS results be wrong?

28 replies

SmallMexicanChihuahua · 08/11/2023 11:26

I was just told that my CVS results are positive for T21. They said there were no signs of mosaicism so they consider this diagnostic.

Unfortunately we would terminate with this diagnosis, however I'm really scared that it might be wrong. I think I read something about a case in Ireland where they terminated based on the initial CVS results but then the full results were clear. I phoned ARC and they said some women have an amnio to know for sure but obviously that prolongs everything.

Has anyone been through something similar where the CVS was wrong and you had amnio to confirm?

I guess I'm still in denial and should just accept it. The combined screening results were very bad with NT of 4.1 and HCG was almost 8. But then at the CVS ultrasound NT had dropped to 2.7 and structurally everything looked fine so that gave us some hope.

OP posts:
SmallMexicanChihuahua · 03/12/2023 11:12

Hi everyone, thank you so much for your support and sorry I haven't updated this in a while.

I had the amnio and it was really hard seeing baby on the screen again. The doctor did see one soft marker for Down's - apparently baby's head was more round than usual; he was also quite small for the gestation. So this sort of prepared me that this was almost certainly the diagnosis and gave me more time to process what's happening. The quick amnio results then confirmed T21.

I never got the promised call from a consultant which makes me a bit bitter. Also never heard again from that particular screening midwife, instead I called their office and arranged the termination with her colleagues.

He was born on 23/11. The delivery was quicker and easier than I thought, nothing like my full term labour 2 years ago. The worst part was when part of the placenta had to be manually removed, they gave me gas and air for that. Everyone at the bereavement suite was lovely and very supportive. We got to spend some time with him and hold him. I'm glad we did, although I'm haunted by his little face.

I've felt a lot of guilt since then. The TFMR podcast, a couple of Facebook groups and a subreddit have been very helpful. I can see that guilt is very common with TFMR, and especially for a 'grey diagnosis'.

Again, thank you all for your care. I wish healing and peace to everyone who has been through or is currently going through this.

OP posts:
CB1209 · 03/12/2023 22:06

I’m so sorry it turned out that way for you. Am thinking of you x

Cait2023 · 04/12/2023 10:32

Oh OP I am so so sorry...sending lots of love hugs and strength your way too. You were faced with an impossible decision and you took every step you possibly could to find out the facts. I've been listening to the 'worst girl gang ever' podcast today which has been ever so helpful. There are a couple of episodes on TFMR, and one of the ladies talks about how she and her partner wrote down all the facts about their situation and the decisions they made based on the facts. She mentioned that it was helpful to read afterwards when the guilt and doubt would creep in. Not sure if that might help a little..

Thank you so much for your kind words, my days are fluctuating between intense sadness, numbness and anger..I'm trying to mentally prepare myself for the worst case scenario, and what it entails but it's just devastating.

Take care of yourself and remember to be kind to yourself too. I hope that time helps heal and that you find a sense of peace.

Thank you to everyone else on this thread also for sharing your stories. ❤️

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