Nuchal fold scan

[Hanzym]

Hi, we went for our scan yesterday and got an NT of of 5.5, we are waiting for the blood results but I can't help but think the worst, is anyone else going through this or have any stories about it?
Thank you from a very worried first time (hopefully) mum to be xxx

Hi,
I have high risk for DS. Don't know about Edwards etc.
I considered harmony but the cost and that it's still a statistic led me to take no action.

We were given a scan with a dr who was incredibly thorough and have another next year. Thankfully there are no markers present though a slight question on the heart hence further scan.

I may well end up with a ds dd but knowing she is healthy in there has made such a difference to how I feel. It was the longest 7 weeks between scans though, not sure how I coped.

A huge {{{{hug}}}} Cat. Did you consider amnio?

For me personally I couldn't take the 1% risk but I understand why people have the procedure. It's just not for me.

I'm due end of April.

Thanks saggy, how are you feeling about it all?

Generally very positive. I cant wait until she gets here. It was a very rough few weeks after the diagnosis whilst we got our heads straight, but we are all ok now. After all, she's still our tiny, gorgeous, beloved little baby.

Hi guys,
I thought I would give you an update, we had the amniocentesis today and a detailed scan, we have to wait 3-10 days for the results so could even take us after Christmas which will be rubbish for Christmas, the scan showed the baby has a hole in its heart and the aorta is not connected to the valves correctly, the thigh bone is shorter than normal and there is no obvious nasal bone, the umbilical cord has 2 tubes rather than 3, so all these things are little markers of more towards downs, so it's just a bit more of a waiting game, I will update everyone with further news when I have it xxx

Crikey! We had none of these, and my DS has a beautiful nose! I'm sure they will get you the results as soon as they can. X

Not long left now. I reckon you'll get the important call on Monday. In terms of the hole in the heart, my DD has a CAVSD Which is basically as bad as a hole gets. The cardiologists are nothing but optimistic. As far as cardiac surgery and repair goes it is very run of the mill apparently. She will have surgery around 6 months old, there's a 95% success rate and an excellent outlook.
I've had loads of lovely supportive positive messages from people who's children are in the same boat. Stay strong. xx

Sorry, I meant to finish that last sentence with 'and who's dcs have made a fantastic recovery after surgery'. x

Hi Hanzym,

I was going through something similar at the same time as you had your NT and posting in the Antenatal Test and Choices board - I wish I'd found your thread at the time as it's a lonely place to be, although I got fantastic support on here. I just wanted to offer a bit of handholding while you wait for the results.

My nuchal and bloods were ok, but baby had the absent nasal bone marker. I was 12 + 5 so just scraped it for the cvs, which I had the same day, and I and got the results in 2 days. It was the longest two days of my life so I really do have an inkling how you're feeling now. It seems like it will never pass but it will, and whatever happens, you'll be in a better place once you know.

Our results were good - no abnormalities detected. I hope yours are the same - I did a lot of reading in these pages while I was waiting and there are lots of good outcomes from people who start in scary places. Hang in there. I'm rooting for you and your little one.

Hey Adaloveslace,
Thanks so much for your support, it's such a horrible wait especially as now we are preparing for the worst, i know I should stay hopeful but with all the other markers from the scan it's hard to stay positive! The consultant did say there was still a chance that our baby could be chromosomaly normal, I just can't think of the termination procedure at the moment, it breaks my heart!
I know we'll get through whatever happens but it's the hardest thing I've ever gone through!
I'm so glad your baby is fine, I do love hearing the success stories
Xxx

Hang in there, Hanzym. Just focus on getting through the next few days hour by hour and don't think too much about the decisions that may lie ahead until you're there. There really are so many stories on here of people who have had extraordinarily scary results and their babies have been chromosomally normal in the end. (This one gave me a lot of hope:
www.mumsnet.com/Talk/antenatal_tests_choices/1902142-Positive-story-from-a-1-2-high-risk-test

and this one: www.mumsnet.com/Talk/antenatal_tests_choices/1914093-Baby-may-have-Downs)

There are also lots of people on here with wonderful stories about their children who have the extra chromosome - at the same time, I know from experience that it's very difficult to relate their stories to what you're feeling. I really do understand. It's so very, very hard. In the end, only you and DH will know what's right and you'll only know that when you have all the information. There's lots of help and support here for you whatever your outcome.

Thank you for those links, they were good to read, I never found that section before so spent all night reading the posts! It's great to hear positive stories but they all seem to have slightly better odds/markers than us but maybe our baby will defy all odds, it's certainly a stubborn little thing, at every scan in the wrong position and when they were performing the amnio was very interested in the needle! It's 48 hours today so I can do a bit more although I really don't feel like it!
Thanks again for everyone's support, yogis place is fantastic for people to talk to, I'm so glad if looked on here! Xxx

That's great that you got through those crucial 48 hours - be kind to yourself this weekend. Are you feeling a tiny bit more hopeful today? I hope so. Your baby sounds like a little fighter who could surprise everyone yet.

The Antenatal tests & choices board is quieter than here but many people on there have similar stories to tell - I did the up reading threads all night thing too. Even if the odds seem stacked against you, I think it helps to read other people's stories.

One little thing I did that helped me a lot was to buy my baby a tiny present while I was waiting for the results - I chose a gold hamsa hand pendant, which is a traditional Middle Eastern symbol of love and protection. I'm wearing it now :-)

you have crap odds Hanzym but even with the ultimate 1:3 that still means there's a bigger chance of everything being ok than not. Stay positive. xx

I seem to flick between positive and negative, I'm more negative than positive I think for self preservation, it doesn't help with my MIL sticking her nose in telling me to terminate, also perhaps I should consider terminating before we get the results cause it might take us passed Christmas! I nearly lost it on the phone to her!
Xxx

MILs! For my own sanity, I mainly dealt with people over text or IM when we were deciding. You can always turn them off if it all gets to much. The trouble is, there's a lot of fear and ignorance and out dated information out there about Downs. Talk to support groups, start a thread here in special needs and speak to people who actually know what they are talking about. Those who 'care' for us aren't always the best to speak to right now. I had a raging row with my mother over this
We I decided not to terminate but a lot do. Regardless of other people's opinions, make the decision that is right for YOU. And give yourself time to properly think. IF your results are bad, which they're still more likely not to be, give yourselves time to deal with the initial shock. {{{hug}}}

Thanks SaggyOldClothCatPuss, your amazingly strong and supportive! I know you must of gone through hell and back making that decision. My mother has been so supportive and was fuming when she heard what my MIL said! I'm sure they are put on this planet to wind us up! Xxx

Op, I really feel for you. My odds are less but this is why I've only told my dm and no one else. It was bad enough having the midwife ask about whether I was considering terminating, which I found really offensive.

All I know is that if there Is a next time, then I'm gonna refuse all tests for this sort of thing.

Hope you're ok x

catameringue our consultant told us that if you would be the type to not consider termination, then she didnt recommend testing either. I can see her point and your opinion seems to match that.

Another interesting thing that she said was that within her patients (it's a small private hospital in dublin so numbers would be small) 100% of her patients who did test positive for chromosonal defects terminated in the last 5 yrs- despite what they claimed pre testing. So it seems that those who take teh test may actually already have made their mind up, if that makes sense.

hanzym, your MIL has some cheek. I cant believe she said all of that. Awful. best of luck to you and your little bean!

thinking of you today Hanzym. xx

The trouble with refusing testing is; even if you do, and they see something anomalous at a routine scan, they HAVE to tell you.

Yeah and that was the main reason why i chose to do the testing actually Saggy- because i wanted to 'enjoy' the rest of my pregnancy as such, rather than worrying about having the news broken later on. It's a tough decision either way- funnily enough the majority of my friends have refused testing, on the basis that they 'wouldnt' terminate in any event.

Another thing the consultant said which was interesting was that virtually all of her foreign (she specifically mentioned French and Eastern european) patients terminate as standard. Seems to be an irish/english thing where we wouldnt. That's what she said anyway, i dont know how true it is. You do see a lot of Downs syndrome children around ireland- partially as the testing is not done as standard (ie as part of our public health system) but partially as culturally, we would not tend to terminate anyway. And the obvious reason that we cannot get terminations here anyway but that's a whole other can of worms!

Thinking of you also Hanzym x

My lovely lovely paediatric consultant is from Sudan. He told me that there they don't have abortion and that they love children with Down's, they are seen as special.

He goes out of his way to be nice and is so reassuring. He always makes me smile and has never once said anything negative.

The results didn't come in, so have to wait until earliest next Monday which means if we do have to terminate won't be able to until after Christmas but we'll have to spend Christmas Day knowing either way! God this is so hard! Xxx

Oh that's fucking awful! Why do they only come in once a week? What a shit way of doing things!