Hi all, just jumping in to answer sjcreevey's questions...
So sorry that you are put through this. The positive thing is there are tons of false positives, but i know it is hard to put our minds and hearts at ease with the ratios dispensed to us!
I was 13 weeeks when I did my NT scan so I had to till I hit 15 weeks before the amnio. I did the amnio at 15w3days and was worried it was still too early to avoid a m/c but genetic counsellor said the 1:200 risk is the same between 17wk to 20wk. If you want to know asap, a CVS can be done but i did not want to cos the m/c risk is 1:100.
The two weeks of waiting and worrying was horrible. I cried a lot. I read up a lot too and saw all the DS children and stories on the web. I must say they are adorable and beautiful beings, and great personality too, I was put to tears thinking of terminating my baby if he is DS, cos DH was firm on doing that. But facing the possibility of a sick child is very scary to me even though I did not want to abort! SOme mums on forums with DS children told me their quality of life is much better now but still we never know the severity in each child whether he was going to be very sick or mild.
If you are doing amnio, get a very reputable doctor who does a lot of it. Mine was really good. Where are you located? You can PM me if you want to talk more. For me, a sonographer did a thorough scan first before he came in. He spoke to us about the whole process and we decided on the spot to proceed with the amnio. It involves using the scan to determine where bb is, then he sterilised my tummy (think with some yellow cool solution), then he preped the needle and started hunting for a good spot to put the needle through, he was shifting his hand a great deal trying to find a good and safe spot. FInally he put it through where bb's head was cos that is the safest spot, bb wont grab needle usually. DH looked at the screen, the needle was nowhere near bb's head. From there dr withdrew about 15ml of amniotic fluid. The whole procedure was prretty quick since he was expert. It wasnt really painful, but uncomfortable cos it felt like a worm dug into my abdomen and wriggled out! I took it easy after that and rested lots.
You can pay a hundred+ extra for FISH results, which gives you quick results within 48 hours instead of waiting 10 days or more. The results will cover trisomy 13,18,21 of which 21 is for down syndrome if i didnt get it wrong.
Can I ask why it was 1:19? You said the scan was fine. What were your NT measurement? What were your protein A and HCG readings/ratio? The whole calculation is very complex as they take into consideration our weight too.
I was already showing my bump before 12 weeks so from 13 to 16 weeks, it was hell and I just wanted to hide my bump everywhere i went, but friends could see and started asking me if I was expecting! It was awful to be pregnant and not being to announce or enjoy it! I wanted to hide cos potentially we could terminate this baby.
If you want to know how the amnio is done, youtube has videos and I went to watch to prepare myself, but honestly after watching, I got more frightened.
Let me know if you have any more questions.
I just called my docs office and asked for him to call me, I love my OB he is really lovely and this morning he had said I can come in or call anytime. He didn't give me any other results, but I did glance at my sheet yesterday and said a measurement of 2.1mm. AFM I'm 28 and currently weigh 65 (5f 5) so weight and age shouldnt be an issue. He said the thickness was a "bit thick" but it was more my hormones that come back "a bit funny" I was in a bit of shock so didn't ask questions plus was at work.
Ive tried not to think about it too much and concentrate on the good odds not the bad. It's so hard though, I just wanted to finally relax and embrace it all and start telling people. I will let you know what the doc says, he didn't mention a CVS so I'll ask. I can't bare having to wait 4 or more weeks to know, and can't imagine having to decide to abort at that stage even though we have both always said that's what we would do.
I am worried that even if it comes back as negative for downs that the bloods might be indicating that something is wrong, and we may not discover what until it's born. My HCG was low and slow rising from the start so that worries me that it hasn't developed right. I guess we just wait and see.
sjcreevey, you are still young and the neck isnt that thick! I am 38 and the neck was 3.1mm max! I am not sure what put your ratio to 1:19. Perhaps the bloods. They like protein A and hcg to be about 1:1. My protein A was about 0.95 but hcg was 2. However, I have read lots of people posting about worse protein A : hcg ratios and their babies are fine. Some babies' neck are even thicker. My friend, also very young was given a 1:75 ratio cos her girl's neck was 4.3mm. She did amnio and baby was fine. Another mum on BH had her daughter 1:25, did amnio and bb was fine too! Hope that brings you hope! But of cos the drs and genetic counsellors will never guarantee evrything is fine until we do a cvs or amnio.
I am not sure what low hcg stands for but I read that low protein A could mean placenta incompetence. Maybe get more details from your OB. You do hav the rights to know the details.
Cvs can be done earlier than amnio, check with your OB BUT there is 1:100 risk for m/c. You and DH must come to some mutual agreement about what the next step is. DH and I could not, in the end he let me decide cos he said I was the one undergoing the procedure and I decided to do the amnio cos I knew I just needed to know how my baby was or I wil continue with this pregnancy without peace. But we agreed that he would not blame me if we m/c from the amnio a very healthy baby. OB advised me to not do amnio if I have no intention to abort, cos he says it is only another 6 months of unknown, but 6 months of suspense will kill me. OB didnt know DH planned on terminating if bb had DS. CVS is slightly different in that the needle will collect a sample of your placenta instead of amniotic fluid.
Ok so spoke with the doc and my PAPP-A or protein A is the culprit, it's very low .17 and should be around 1.0. My HCG was low at .6 and the neck 2.1 which is within normal ranges. My sis in law had 4.0 with her son with fine bloods and he is perfectly fine. Anyway so the doc explained that high HCG is a downs indicator and low HCG is an indicator of Trisomy 18. The Papp-a can mean something is wrong with the placenta. I asked about a CVS as I don't want to wait 3 weeks but he said I was too far. Arrg the anxiety is going to kill me but ever if we get the all clear for downs he said I may have to be monitored closely. I don't care if I have to spend a few months in hospital if it means I deliver a healthy bub!
PS mom2one thank you for talking with me. I am so lost at the moment and don't have many to talk too so your kind words are reassuring. Thanks
Hi just wanted to put my 2 cents in for Sjscreevey. I thought my experiences might help. When I had my nuchal scan for my son we were given a 1 in 5 risk rating based of the nuchal measurement. I had both a cvs, then later an amnio because the cvs found sound funky cells that turned out to just exist in the placenta. The best advice I received was from my ivf doctor who told me to remember that it is just a risk rating - all of these things they look at are just indicators - it doesn't mean there is something definitely wrong with your baby. And importantly after all that, I gave birth to a 100% healthy boy (8 weeks early for god's sake but in perfect health all the same).
I'm also in the amnio club this time - 1 in 50 this time around which I've been told is primarily because of my age. I just had my amnio on Monday. My fish test came back clear which is a relief. The best advice I can give is, pay the extra money for the fish test - you will get quick assurance on the 5 most common chromosomal disorders and secondly, rest up big after. I'm finding that tough to do this time around with a two year old.
BTW - I was also told when I went for my 12 week tests this time around that because ivf messes so radically with your hormones it can sometimes mean that the bloodtest portion of the triple test can throw some weird results.
Me 39 (low functioning thyroid, mild endo) - DH 36
IVF 2009 - BFP - beautiful baby boy (2 y)
iVF Jan/Feb 2012 - BFP
sjcreevey:- Oh boy, what a long wait for you, so sorry you have to go through this. Fingers crossed everything goes fine, the odds are in your favour. Hopefully as Megs72 says the IVF drugs may have thrown your hormones out.
ME 39 Partner 34 TTC no. 1 since 2009 Endo & PCO & Graves Disease
1:IVF 5 cell embie 0 frozen BFN/ 2:ICSI 8 cell 0 froz BFN/ 3:IVF grade 3 blast 0 froz BFN
4:IVF early blast 0 frozen, period then BFP! wtf? Due 10th November 2012, its a boy
sjcreevey - everything crossed for you. Take care.
Me 36, DH 36
Our darling boy born 31/12/2012
2012: IVF#1 Antagonist cycle started 23/3/2012
2011: ectopic in Jan, missed MC Sept, incomplete MC Oct.
I couldn't read your posts and not reply.
Last year I was pregnant and after my NT scan the DS risk was 1:9. I couldn't believe it. Even I had fallen pregnant through IVF, the issues were with my partner and I am a 27year old healthy, fit woman. Straight away our obstetrician advised us that we could have a CVS or Amnio as they are very similar tests and ultimately give you the same info with the only differences being the timing (CVS tests from 11-14 weeks and Amnio tests from 16+ weeks) and the small risk of miscarriage. I know the risk of MC is slightly higher with a CVS, but I would have probably still had one this time around if the NT results had of come back at high risk. Unfortunately our baby had passed away when we went to have the CVS done, but we proceeded with the test in order to know if we were dealing with a genetic or chromosomal issue.
I have heard the wide majority of people who have the Amnio and CVS go on to have a healthy and happy baby and I know as stressful as the situation is you need to know either way. Please know we are all thinking of you and if I were you I would question your results with your IVF doctor and ask them about the CVS just to have peace of mind asap.
Take care xx