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Antenatal tests

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Original poster

12 week scan yesterday... devastated. Any advice welcome.

232 replies

WickedWitchOfTheWest83 · 21/04/2018 18:13

Hi,

So yesterday (Friday) morning my husband and I skipped off to the hospital for our 12 week scan, both very excited to see our very much wanted 2nd baby.

An hour later, after hearing the heartbeat and watching the sonographer struggle because the baby was moving around so much (which my husband and I were laughing at because we thought it was so cute!), we were ushered into a private waiting room and told our baby’s NT is measuring at 6.3mm and there seemed to be a bit of fluid around the head too. I was hysterical and my husband was barely holding it together.

They took my bloods and couriered them off to be processed as quickly as possible and booked me in to see the consultant for another scan and CVS on monday. So we are waiting all weekend unable to function at all!

The foetal medicine nurse/midwife who was in the room with us at the hospital, trying to reassure but also prepare us and explain everything to us as best she could, called yesterday afternoon with the results...

1:146 risk of Downs.
1:9 risk of Patau’s Syndrome.
1:9 risk of Edwards syndrome.
Hormones are very low too - 2 particular pregnancy hormones that I don’t remember the names of.

So all is still going ahead on Monday with the scan and CVS. The consultant isn’t actually working on the ward that day but she is going to be in the hospital and has promised to come to the ward just for me.

We are in pieces. I can’t believe this is happening to us! This sort of thing is the kind of thing you read about but never think it would happen to you. Not really. I’m 34, my husband is 38. That’s not really old, is it? My husband and I just keep taking it in turns to be the strong one and hold the other while we cry. It’s mostly me crying, but he is just as devastated. We have to get through the next few days of tests, results and decisions and I’m not sure how to do it.

I keep scanning the internet and these threads looking for good news - women who have had the same experience but had healthy babies. We wouldn’t continue with the pregnancy if we didn’t think the baby was going to have the best quality of life, but we are trying to not go down that road yet - we want it to all have been a mistake on the doctors part.

I’m not sure what I am asking, but please post whatever replies you think might help.

OP posts:
CuckingFunt1987 · 23/04/2018 20:02

The odds are in your favour op . I'm sorry your feeling this way . Hope you get good news xx

herethereandeverywhere · 23/04/2018 20:12

Hi OP, so sorry you're going through this.

My friend had a similar 12 week scan experience to you. Her sonographer said the nuchal measurement was 'off the scale'. Her combined results for Downs were 1:2, I'm not sure about the other conditions. She also had low blood markers similar to you.

At her CVS and scan the nuchal still looked large. She received the whole portfolio of CVS results which all came back clear. Closer monitoring and testing throughout pregnancy.

He was born at term a perfectly healthy NT child, no issues or conditions. He's now 6.

Hang in there, you still have a chance of it being okay. I remember how stressed my friend was and how long it took to get results and how she wouldn't really believe it until he was born. But it can still be all ok. I'm really hoping for you.

Original poster
WickedWitchOfTheWest83 · 23/04/2018 20:32

herethereandeverywhere thank you - I hope I’m as lucky as your friend and smooch x

OP posts:
iheartmichellemallon · 23/04/2018 21:14

All the best Op. Thanks

PotteryLady · 23/04/2018 21:18

Good luck - sending big hugs

PerfectlyDone · 23/04/2018 22:25

Glad today went ok.

It's going to be a long couple of days, so keep busy, keep distracting yourself until you know.

Everything crossed here for you x.

Maziemouse · 23/04/2018 22:34

Everything crossed for you xx

sprinkleofsunshine · 23/04/2018 22:34

Good luck op Thanks

MollyHuaCha · 23/04/2018 22:53

Thinking of you.

MyKingdomForBrie · 23/04/2018 23:02

Good luck OP Flowers

TheRealMotherGoose · 24/04/2018 08:54

I'm so sorry you're going through this, how terribly stressful. I suspect other posters have mentioned this but the Harmony test was very useful for me in giving more certainty than the NHS initial tests could. I paid to do it privately but I think some parts of the NHS may also offer it; do ask.

Original poster
WickedWitchOfTheWest83 · 24/04/2018 10:55

I had harmony with my first as I just wanted to be sure - there were no markers, but my husband and I really wanted to know the sex ASAP. Tbh, we never even considered there may be something wrong. And there wasn’t.

So when i has the 12 weeks scan and they said there was a lot of nuchal fluid surrounding the baby, I called the people we had the harmony test with immediately - while we were in the hospital still and waiting to get the blood test. They said that if they were doing the harmony test, the scan is done first and they would have also seen that there was a high NT fluid (6.3). They would have stopped the harmony test and not been able to do the NIPT - instead the would have immediately sent me for a CVS. They said they would see me for a second opinion but that everything I described to them made them think our hospital was already doing everything they would do themselves and the CVS would give us a definitive answer one way or another. The harmony only tells you if it is one of three chromosome abnormalities anyway - downs, patau and Edwards. So if it isn’t one of them, there is still a load of other syndromes it could be and that there must be a reason my baby has so much fluid surrounding it. In which case I would need a CVS anyway and not having it would have wasted time. The harmony can take up to 2 weeks to get the results back just for those three syndromes and the CVS takes 2 days for them. Longer for all the others but again, the harmony doesn’t cover them.

Plus the harmony is 99% accurate. CVS is 99.9% accurate and faster. There’s no point in having the harmony now.

I think the harmony is a great test, but they can’t do more than the hospital is now already doing for me. If it comes to it I will go to a specialist at the FMC and seek advice there but I’m pretty sure we are past the stage of which test to have as I am having all of them that I can possibly have right now x

OP posts:
MarshaBradyo · 24/04/2018 11:25

Wicked it’s the right way to go, you need the full array in any case

Hope you’re holding out ok for tomorrow

TinyTerror1 · 24/04/2018 18:00

You're absolutely right OP in cases of high NT the Harmony is no help. I am thinking of you and hope you get the best outcome tomorrow xx

rebeccabecca · 24/04/2018 18:09

Will be thinking of you tomorrow x

summerlovingliz · 24/04/2018 18:20

Wishing you all the best tomorrow xx

Nightmanagerfan · 24/04/2018 18:26

Hello, just to say I'll be thinking of you for tomorrow. We are in a very similar situation - had 12 week scan on Monday and NT 4.6mm, risk of downs 1:5 plus a heart defect that's an indicator for DS was found. The staff were amazing and we had CVS the same day, as well as sending the Harmony off to the US, and we'll get the CVS results by Friday. It's a really anxious time - we are in bits and it's a complete rollercoaster. Be kind to yourself and hoping for good news for you tomorrow.

Original poster
WickedWitchOfTheWest83 · 24/04/2018 20:30

Thank you for your kind words and messages everyone. Means more than you could know.

Wishing you all the best Nightmanagerfan - please update when you know more. Will be thinking of you xxx

OP posts:
ladymelbourne1926 · 24/04/2018 21:56

I will be thinking of you tomorrow x

Brush122 · 24/04/2018 22:02

Sending you best wishes for tomorrow OP

Aprilmightbemynewname · 24/04/2018 22:03

Try and get some sleep op, good luck for tomorrow.

fabulous01 · 24/04/2018 22:04

The same thing happened to me.
I had the cvs
And it didn’t end well
You have to take one step at a time as what you are going through will push you to a form of hell and perhaps part of you won’t ever get back.
Do what you need to do for your circumstances
And massive hugs
Take care x

GlitteryFluff · 24/04/2018 22:08

Thinking of you x

Fridasfridgefreezer · 24/04/2018 22:13
Flowers
FuckingHateRain · 24/04/2018 22:14

Thinking of you OP, virtual hug from us all Flowers