Pregnant after T21

[newyorkminute]

I've just found out I'm pregnant with DC3. DS2 was diagnosed with T21 (Down Syndrome) shortly after birth.
The combined test had come back with a 1/600 chance so I'm naturally sceptical about repeating the process for this pregnancy. DS2 is a joy and as strong as an ox with no major health problems which is presumably why it wasn't picked up at the antenatal stage. However, I struggled massively with a lack of preparedness when he was born so am keen to throw every test possible at myself this time.
Does anyone have experience of requesting CVS/amino at a very early stage (I am literally 4 weeks). How early can these be done? Am I better off selling a kidney and having the harmony test done privately? I'd be grateful to hear the experience of others.

I think the earliest CVS can be done is 11 weeks. Harmony and other similar tests can be done from 10 weeks.

I've also had T18 and T16 pregnancies in a row and am 12 weeks today and going for my nuchal and to collect the results of the Materniti21 test. It's one of a group of non invasive tests which are more wide reaching than harmony. They include a number of micro-deletions such as diGeorge and Prader-Willi. They are in kidney selling territory though. Let me know if you want details.

Thanks Ladies, DS2's diagnosis was such a shock and I wish we'd known in advance. Knowledge is definitely power in my view. I'm going to talk to DH about the harmony test - maybe we can sell his kidney instead!

The harmony test is available in my nhs but only for those considered high risk, think it costs roughly £200/300 privately in London? but also think local babyscan clinics will take the blood and send it off to the clinic in London for you.

Thanks Sim that's really helpful. I wonder if I'm considered high risk enough? I've been told everything from a 1/100 chance of it happening again to no statistical difference to someone who hadn't had a child with DS. I'm 38 so I guess that the chances are higher on that basis alone...

Just looked up MaterniT21 Mrsfonz. It looks fantastic. Another one To add to the maybe list. Thank you.

Have you explored the antenatal care and tests that you may be entitled to on the nhs? We very recently lost a baby to T13 and we're told that if I get pregnant again to go straight back to fetal medicine for an early scan and cvs test if we want it. It was also floated but not confirmed that we may be able to get harmony on the nhs. However I understand that only gives an indication of high or low risk and I'm pretty sure we would be high so we would want the definiteness of a cvs test. It may be worth asking if you haven't already

Thanks Hopefully. I've made an appointment to see the gp and will ask about that they offer on the NHS.

I'd ask for an urgent referral to fetal medicine I think. Most things in fetal medicine seem to be urgent so getting an appointment quickly shouldn't be a problem

The basic risk for age alone at 38 is 1:150 - if you are 39 when you deliver it's 1:110
I believe the NHS will treat you as high risk and offer you additional testing on the basis of previous pregnancies/children

In London St George's hospital is now offering an similar test to Harmony (screening maternal blood for fetal DNA) to high risk women