Nuchal translucency higher reading worries

[HF2019]

Hello, I’m after some advice if anyone can help?

I am now 20 weeks and changed care provider this week. My previous care provider carried out 12 week scan and testing for downs etc- the higher Nuchal translucency level of 2.9mm (95th percentile) was not told to me at the time of scan. Bloods were taken at the same time and while I’ve been given an overall “lower chance” for downs @ 1:1000 I am still very concerned with the higher NT level. I have since had a 20wk anomaly scan and Fetal cardiac scan which both appear normal so my concern is focused on the downs.

I am very distressed with this, more so as my previous care provided did not highlight this or make me aware it was higher than it should be and the risks etc. Unfortunately due to physically and emotional difficulties I just don’t think I could cope with a child with this condition. I am angry they didn’t make me aware at the findings and have only found out at my 20wk scan which leaves me in an awful position and worry

I know to a lot of people the odds would seem ok or good but for me this is a huge worry with the higher NT level. I am considering NIPT testing but the cost is out of reach for me and would have to consider a loan to fund it as a last resort.

Does anyone know if I’ve had a “normal” anomaly and cardiac scan if my odds will now have changed or remain the same as what was given at 12 weeks?

Any help or advice would be hugely appreciated!

Thank you

[GemX81]

If you are at all concerned I would speak to your doctor or midwife. Having odds of 1:1000 are really good odds that everything is ok and the measurement, even though bigger than most is in the normal range. And it's surprising what they can tell by just looking at your baby, especially at 20 weeks. I had my second baby at 37 and I was much more concerned about conditions like Downs than with my first who I had at 33. When they calculate your risk they use your maternal age, the NT measurement and results from the blood test to work it out. Also the NT measurement will depend upon the exact moment in the pregnancy it is measured, hence why it's done during the dating scan. My second baby had a higher measurement than my first by quite a bit but I ended up with a much lower chance of Downs, I'm presuming down to whatever my blood work showed. Unfortunately they can't completely rule out chromosomal abnormalities (unless you're testing the foetal DNA) but the odds are definitely in your favour that all is ok. I would talk to your midwife and tell them your concerns. I hope everything goes well for you xxx