very high NT measurement-helpless, lost and tortured

29 years old mother-to-be from Brisbane with one miscarriage last year.
I went for my NT scan last Friday at 12 weeks and 5 days at Mater Womens Clinic and got an NT measurement as high as 4.6mm. Combined with my b/w, the lady performed my scan gave me a very high risk of 1:70 for Ds.

The scan lasted for almost 40 minutes with losts of pictures been taken. the lady complained about my baby's uncooperative position. I asked her after the procedure whether this might be reason for such high measurement but she replied that she had the condidence that she got what she wanted. I knew my question might be silly but that was my last straw at the very moment.

the lady did not mention any other information to us except for the thickness of measurement. I did not know whether because other factors seemed alright for her or the problems were too much she felt it might be better to let my OB to explain to me. But she did say that there was no hurry to make decisions. we could either wait for 20s week u/s or for some invasive methods.

I rang my OB and he suggested a CVS. We accepted immediately and let him to arrange for us. I am hoping I could get the confirmation call from Mater to know the time of my CVS.

This is the longest weekend my husband and I have ever experienced. And I know there are more waitings in the next few weeks.

I have prepared myself for the worst. But ~~~~~~~~~~~~~

Oh honey, wishing you all the best. I do hope your CVS is uneventful and you get some good news.

:hug:

For what its worth my brother was a 1:50 baby.
He's 19 now and in new Zealand at the moment snow boarding with a bunch of his buddies with not a care in the world, healthy as can be.
I know it's hard, but try not to stress yet until you get all the facts :hug:

thank u so much for your encouragement, ladies.

I really need some emotional support now.

My husband and I have kept my pregancy so far as a secret even for my parents and parents-in-law.

My last miscarriage (the baby died around 17 weeks in uterus without obvious signs) has left them heartbroken especially for my own mum. She almost cried her eyse out. So my husband and I have decided to let them uninformed this time. I am happy now that they do not have to go through what we are suffering now. They are in China and the long distance will only left them more devastated and worried. However, I aslo feel alone and helpless.

~~~~~~~~~~~~~~~~~

Oh Wongbaby big hugs for you. Firstly they are just numbers. My mum had a 1 in 4000 chance with my sister who was born with Downs. So stay positive get the extra testing done and take it one day at a time. Ultrasounds can be so off the mark and by the sounds of it she was having a tough time getting the info she needed.

Big :hug: try to remember that means that 69/70 babies with the same result will be perfectly fine. Good luck and I hope you find out good news soon :crossfingers:

sorry to hear you are having all these stresses and also sorry to hear about your angel baby.

The NT test is just an indication...not a definitive result! try not to stress, i know thats so hard, but thats the best thing you can do for your little one!! sending you hugs.

I too am sorry too hear about this stress.

I have a family friend, similar age to yourself, was given a high chance of DS baby (sorry I don't know the figure) he is now a perefectly fine 3 year old. It is just a number. I know it is hard not too worry but try to stay positive.

Hi honey,

Let me share my story. Hopefully it will give you some hope in this dark time.

I have been in your shoes. My DD, at 11wks, had a nuchal fold measurement of 7mm. 7mm.

When that combined with my bloods, we had a 1 in 20 chance of DS.

We opted to have CVS straight away. The sonographer was great. I cried the whole way thru the procedure. My DH was shell-shocked, all he could do was hold my hand. Fortunately my mum was there too and held my other hand, stroked my hair and told me she loved me.

Then we saw the Obs. She prepared us for the worst - even if we were cleared for downs and other chromosomal abnormalities, there was no way the baby would be ok. We had a 1 in 10 chance that we would end up with a normal, healthy baby. She painted a very bleak picture - in her experience, she had never seen a nuchal measurement that high mean nothing. If it wasn't chromosomal, it meant major organ issues which would present their own complications.

So we cried some more. We waited. We cried. The first 48hrs while we waited for the fast test results were the worst. When I got the phone call telling me we were cleared of downs and the two other main chromosomal defects, we cried some more.

And then we had to endure 2 weeks of waiting for the full results. Somehow we got thru... And we were cleared again.

Then we had to wait another two weeks. We had a scan booked for 16 weeks at which point the sonographer said he'd be able to check the major organs for growth, development and function. We waited.

We had the scan. My DH held one hand, my mum held the other. We all held our breath. The dr checked the organs, one at a time. He told us what was happening. With each organ that was checked and cleared, my eyes filled with more tears.

When he finally told us that he could not find any developmental or growth or functional issues with any of the organs, that he was confident everything was ok with the baby, I finally let myself breathe and had a big cry.

The sonographer and Obs were astonished. Neither of them had seen a nuchal measurement that high that lead to nothing. They diagnosed a cystic hygroma, which basically meant her head grew faster than the neck and surrounding tissues and took a while to catch up.

We had another scan at 20wks to be sure - and then 20wks later I gave birth to a happy, healthy baby girl. She is now 2.5yrs old and the light of our lives. :loveshower:

My advice to you is to stay away from Dr Google. Google is not your friend at this time.

Find people to talk to who understand. DH and I really struggled with people trying to help - to understand - but they do not.

People will judge you if you think about terminating... But no one should understand that, it is a horrible horrible place to be.

Some of us, on here, sadly understand. Talk to us. We are here. I am here, I will listen. I have walked in your shoes.

:comfort:

First of all :hug: this must be really scary for you and your DH. Especially since you have already had such a tradgedy together.

I waas just going to say the same as heaven, if you are a glass half full kinda girl you will hug the knowledge that you have 69 chances of having a perfect baby tucked up inside right now. I really hope that is the case for you.

Xx Bella.

Massive hugs Wongbaby....I have been in your shoes...we were given a massive 1 in 2 chance of having a down syndrome baby. He is now a perfectly healthy almost 18 months old running around the house making lots of noise (as you do when you're a toddler!). It was an almost impossible wait those few days waiting for the CVS and then waiting for the results. Our story is a bit similar to Ocean Princess except it wasn't until 30 weeks we were given the final all clear. try to keep n mind that you have a 69 in 70 chance that bubs will be okay.....I know it is hard not to think the worst but try to think of the odds the ae in your favour still

:hug:

Thank you girls so much for your warmness and encouragement. I wish you all the best with sincere hearts.

OceanPrincess, your story makes me cry with joyful tears. I wish I could be as strong and lucky as you.

Melbel, with what you have described, I almost see the cute running toddler. I wish one day I could be the same loving mother as you.

This could be a long long Sunday afternoon for me. My husband is busy with gardens. I know he is trying to keep things around. He is a very rational person and wants me to be as him. he told me that never wondering things you could never have control. But I ~~~~~~~

I worried about the results. I dreaded about the decisions I have to make if we are proved to be the one. I worried about the possibilities of any genetic disorder my husband and I might have and we will be left childless.

~~~~~~~~~~~~~~

wongbaby - my dd had a high nuchal measurement aswell and we had the cvs done and were told very scary things when we were pregnant. She is now in the next room dancing to the wiggles! I also have a friend in my mothers grp who had the same and her dd is fine too. I know its hard not to worry. Thinking of you.

thanks Razzberry for your encouragement! It is so nice to hear someone had the same experience. Wish I have the same luck. pray~~~~~~~~ing

i had a similar scare wongbaby, it's awful, waiting for the results.

i had a urgent phone call from the hospital on a Friday afternoon, telling me i HAD to have an urgent amniocentsis test on Monday morning, as the NT scan showed a 1 in 6 chance of Downs.

The weekend went so slowly
I had the test - the idiot specialist, inbetween giving me a consult and actually performing the amnio, decided (without telling me) to OMIT the anesethetic. I will never forget that.

you have to wait two weeks for the test results
when i went in to get the results, the specialist was "on holidays" but no-one had told me

god that was the longest two weeks.
i felt like i was going mad, so even though it was irrational, i went shopping for cot - that sort of baby stuff - looking in the classifieds and visiting people's houses with baby stuff for sale - it kept my mind a bit occupied. i felt i HAD to do something POSITIVE about the baby.

it is SUCH a hard time, the waiting.

the amnio test came back clear. there is a chance of miscarry, just by having the test itself. i was later told, the NT result was false.

it was an enormous stress, going thru the testing.

I can understand your reluctance to tell your parents, what's going on.

I hope your baby is ok wongbaby, enormous hugs to you.

Gigi I just hope the hospital could be effecient to book me into a CVS as soon as early next week. Hopefully it is tommorrow I could get the phone call. Then there will be the long waiting period. Cant image how I could handle the stress. But this is life.Isn't it? My emotions can easily break down.

You can pay an extra $200ish dollars to have the FISH testing done when you have the CVS.....this will give initial results for the five main chromosomes in about 24 hours. That will lessen the waiting time for the down syndrome results at least...if the FISH testing comes back clear it is highly unlikely there will be anything wrong with the other chromosomes...make sure that they explain all this to you wen you see them hun.....

i have been there too, mine was what showed up in my blood test though, not the fold itself, so it was slightly different.
but i had good results too, perfect little girl.
big hugs to you at this difficult time. its a very hard thing to go through. i hope you get booked in asap