5.3mm NT reading 1 in 2 risk T21

[Mrs173]

Hi all.

please help with stories (with all outcomes) and a hand hold through this really traumatic time in my life.

a much much wanted baby and after 2 miscarriages I was over the moon to make it to my 13 week dating scan and watch my perfect baby moving around, hiccuping, waving and see all their organs pointed out THEN the sonographer got the NT reading of 5.3mm (3.5 is the highest accepted normal value) and it all changed. I was alone in the scan room. My husband and I were then taken into this awful side room and told about all the things it can be, bloods taken etc and it felt like it has all come crashing down.

my bloods are back and it’s not good. I have a 1 in 2 chance of t21 and 1 in 8 of the other 2 which is very very high. I guess I already know how it’s all going to turn out but I can’t have an amnio until a week Monday (9 days away) and it just feels like the most awful wait ever. Then I hve to wait for 3 days for results and make the awfully hard decision to end the pregnancy and loose my much wanted baby if it is the best thing for our existing child and for this poor baby if they are going to be so poorly.

please help me get through these awful days of waiting. I had an appointment yesterday at fetal medicine but they couldn’t due a cvs due to placenta position. I cried most of yesterday.

i have 2 friends due anyday and a cousin who has a 2 week old and of course none of them know I am pregnant but I cannot face seeing or hearing about their baby which also makes me feel awful and jealous but it’s just too much heartache.

Picture of our baby at 13 weeks

I have no practical advice for you OP but just didn't want to read and run.
It will be a very long 9 days but remember that at this stage measurements are so very small that mistakes could be made. A 50/50 chance still means only half of the liklihood.
I'm sorry that this is happening to you.

I had a similar day on Thursday OP. The baby was a surprise and I’m 39. Nuchal measurement was 3.6mm and similarly taken into the “nice side room” and told all the bad outcomes. My blood isn’t back yet but given my age, they said to expect a high risk result.

They wouldn’t refer me for NIPT until the bloods came back. NIPT can only be done on Mondays here so I’ll have to wait longer for that. I could go private but that would involve - travel!! Leaning towards requesting CVS but because of where we live this is going to involve more travel.

I don’t know how I’ll get through the next 4 weeks until we have more clarity from tests and scans etc.

In all the panic, I didn’t even request a scan photo.

Hand hold.

Wishing you all the best - at least it sounds like your medical team are moving quickly.

Need to buy a new baby card for a friend and a wee present. That’s going to be tough. I so feel for you.

Thank you @OgdensGoneNutFlake i looked at it as a 50/50 chance too but they told me it doesn’t quite work like that and aside from telling me for certain it is a chromosome condition (which they can’t without a diagnostic test) a 1 in 2 is the highest chance they can give me. unfortunately all my bloods point to that outcome too so I’m really not very hopeful just heartbroken.

@Surprisepregnancy1 im so sorry you are in the same boat. It’s an awful place to be. How many weeks are you? I had an appointment yesterday where I wanted a cvs but couldn’t hve one done as my placenta wasn’t in the right place for one. So I have to wait until 15 weeks for an amnio (week Monday) then I should get the first lot of results at the end of that week (which will be almost 3 weeks since my scan) and the full results a week or so later (4 weeks since scan) so unfortunately there is nothing quick about all this. All the whole I’m dreading feeling baby move or anything before I have to have extra tests as we have decided we would terminate based on results of abnormalities. We both feel we couldn’t cope raising a child with additional needs and it would severely impact the one child we have.

m hand hold back to you it’s an awful time and you find yourself thinking and saying things which completely shock you. I never before thought I’d terminate but that is now the situation we face. Hope your bloods come back more positive than mine as there are plenty of other reasons for increased Nt.

xxx

hello ladies, currently going through a very similar thing .
do Any of you have any updates ? X

I’m really sorry you are going through this @Natalierosex unfortunately I don’t have a happy ending to share and we said goodbye to our little boy at 17 weeks. Xx

@Mrs173 sorry for your loss. We lost our little girl at 20 weeks last year and it's devastating.

I had a CVS yesterday after a 1:2 risk or trisomy/triploidy on screening. The wait is agonising.

@Natalierosex how are things going with you? Sending love.

Oh @extrastrong i am so so sorry to hear this. What an awful thing for you to go through. I am so fortunate in that I am expecting again and all tests came back clear but I’m just devastated for you to be facing this, it truly was my worst nightmare. Pregnancy after loss is so difficult but y
for you it must feel impossible right now. I hope you have a great support network?

sending you so much love xxx

@Mrs173
I'm so pleased to hear your good news.

Yes it is agonising and so exhausting

I really hope the results go the right way for you @extrastrong and I am so so sorry for this painful time xxxx

@Mrs173 I’m so sorry to hear that, did u miscarry spontaneously or did you have to have induced?
Congratulations on ur pregnancy! How far along are you? Super exciting for you!

@extrastrong im really struggling .
im booked for a cvs on Monday but I’m worried about the pain.
my husband is being so supportive but I am absolutely devastated that I’m going to have to go through this pregnancy with so many test and unknowns about the babies health . Feel so lost

I chose to TFMR it was such a difficult decision but I made the “right choice” for my family considering our 18 month old (at the time) and our financial and family situation with elderly relatives to care for etc. it was heartbreaking and the day I delivered him will always be the worst time ever but I’m coming to be at peace with it. I’m now 28 weeks. This baby is due EXACTLY a year after I delivered our little boy and it’s another boy. He will never replace him but im looking at him as a present from big brother. I had to have an amnio 4 times because they couldn’t get the fluid. It wasn’t too bad - just grip your husbands hand super tight. Sending you lots of love xx

@Natalierosex so sorry you are going through this and understandable that you feel lost.

I know we were very fortunate as we had a good outcome. I had an amnio which showed no chromosome abnormalities, had a detailed heart scan at 17 weeks which was normal and all was normal again at the 20 week scan. The whole thing was a nightmare and the pregnancy was very stressful. Baby boy arrived at 39 weeks and is now 3 months old - and seems to be thriving. The anxiety and stress of the pregnancy is fading now. Wishing you well and hoping that fetal medecine can provide advice and a listening ear for you. x