34 weeks offered amniocentesis

[Elz1406]

Hiya, just wondering if anyone else has been in this position. I had a scan today with specialist fetal medicine as one of my growth scans shows abdominal measurement on 97th centile and femur measurement below the 1st centile. My first baby had a femur measurement on the 3rd centile and is fine.

After the very detailed scan today, the doctor told me that the bone measurements meant an increased risk of down syndrome and offered me an amniocentesis. She said there were no other markers. My combined screening at 12 weeks showed a 1 in 5000 chance for the 3 syndromes.

We don't want to have an amniocentesis due the risk of premature labour combined with the fact that it won't change anything. The nurse said I could pay for a non invasive blood test but I've just been researching now and it doesn't seem like there is anything other than amnio that would normally be offered this late on. Obviously I'll end up ringing and asking for clarification but just wondered if anyone had had a blood test for syndromes at this late stage? Thanks so much xx

I wouldn't, at 34 weeks. I would have considered earlier but it wouldnt change my plans that late on so I'd just carry on. Ask what their plans are for testing postnatally.

The question to ask yourself and your team at this point would be what would change in terms of treatment and management if you didn't have the amniocentices versus if you did have it and it showed the baby had downs syndrome?

If they are do regular monitoring and keep an eye on you and would do in both situations and you wouldn't terminate I probably wouldn't risk the chance of premature labour.

I'd also ask about time frames. Could the test wait until 37 weeks when if you did go into labour as a result baby is already at term.

NIPT can be done until the end of the pregnancy.
I would be asking whether information that might be gained might change where and how you deliver the baby.
You could consider whether it would be helpful to you to be able to process any information before the birth.

Agree with all of the above. If it wouldn’t change anything for you then there’s no need for any testing at all if you don’t want it. NIPT can be done, but will take a week or two to come back potentially (check with your team on time frame) and does cost money that maybe you’d like to spend on something else if it doesn’t change anything for you? Equally, maybe you’d like the extra peace of mind that a low risk NIPT result would give you, a bit sooner than baby’s birth.

If it was me I would go for some sort of testing as there is an advantage to knowing about a downs syndrome birth in advance so additional specialists can be on hand to check the baby over. I would also want to mentally prepare myself or more likely put your mind at risk as there is probably nothing wrong.

Can you push for an NIPT on the NHS?

We don't want to have an amniocentesis due the risk of premature labour combined with the fact that it won't change anything

It may or may not change things though, and that’s a conversation to be having with the fetal medicine specialist as part of the decision making.

One of mine had issues known prior to birth and the more information, the more it assisted both their and my care team to make decisions and plans. For example, changing the location of birth to a facility where more appropriate neonatal facilities were available, the neonatal team doing scenario planning in advance and everyone being aware of the ‘the plan’ no matter when it had to spring into action as this included neonatologists and neonatal surgeons etc. It’s far preferable to a birth where something unexpected is detected and then everyone has to scramble with emergency transfers and working out how they are going to handle it on the fly. It’s good to find out whether any of this may or may not be applicable in your potential scenarios.

I think this is exactly what we've decided - it won't change our plans but we're rather have a few weeks to prepare than no time at all. I couldn't even get through to book the NIPT with the NHS yesterday let alone get it for free! 😂We've decided to cut our losses and get it down privately in the hope it might be a bit quicker - it's a fair bit cheaper than the NHS doing it too. Thanks for your response :)

Thanks for all the replies:) I'm having the nipt done privately then it's just waiting for results and trying to manage the worries. I know I'd rather have a few weeks to prepare than not so it's definitely the right thing. :)

Sounds like you have made the right decision for you. Wishing you strength and patience during the nervous wait for the results