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Pregnant after T21

(12 Posts)
newyorkminute Fri 13-Nov-15 08:43:01

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.

VocationalGoat Fri 13-Nov-15 08:53:38

Hi there flowers I've had two consecutive trisomy pregnancies (not Downs related) which we did not carry on with.
With our first trisomy pregnancy I had amnio.
2nd trisomy pregnancy CVS
I had another CVS with the following pregnancy which was 'normal' and resulted in DC3.

I found CVS much easier than amnio. It's done earlier at 11-14 weeks, so at least you know sooner rather than later if there are or are not complications.
I had no problems following amnio or CVS.
Just take it really easy for 72 hours.

I would go with a harmony test if possible. Anything less invasive and as diagnostically accurate as amnio/CVS is worth paying for.
Harmony wasn't as widely available during my last pregnancy. So I have no personal experience. But it sounds great to me.
flowers

VocationalGoat Fri 13-Nov-15 08:56:44

But please don't sell a kidney. grin
It shouldn't have to come to that!
It will be great if and when the Harmony test is available on the NHS!
Hugs and flowers

mrsfonz Fri 13-Nov-15 09:39:16

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.

newyorkminute Fri 13-Nov-15 09:54:53

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!

SimLondon Fri 13-Nov-15 10:02:17

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.

newyorkminute Fri 13-Nov-15 10:10:20

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...

newyorkminute Fri 13-Nov-15 10:32:18

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

Hopefullyhoping Sun 15-Nov-15 20:02:23

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

newyorkminute Mon 16-Nov-15 12:52:48

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

Hopefullyhoping Tue 17-Nov-15 09:24:18

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

EldonAve Tue 01-Dec-15 15:09:53

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

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