To have amino or to not have amnio?

[PereyButton]

Just had our 20 week scan. A very small chance there may be a chromosomal abnormality. Also a chance of cystic fibrosis, infection, and a couple other things. Consultant re did the scan. She looked concerned. CF tests only test me and DP for 85% of cf strands. Could pay the £300 for NIPT but our only way of knowing 100% is amnio. We would choose to terminate if baby had a disability - no judgement please. I don't know whether to have the amnio or not. Terrified. Devastated. Feel sick.

Anyone any experience?

I read in Expecting Better that the 1% miscarriage rate is actually highly misleading and the real percentage is far below that. The difficulty with measuring it is that inevitably some of the babies tested with amnio will have serious abnormalities meaning that they would have spontaneously miscarried anyway. These miscarriages are then recorded as 'after the amnio' and included in the 1%. The real likelihood of an amnio CAUSING a miscarriage is extremely low.

I had the Nipt last week as I am at a high risk of down syndrome. My NHS Trust offers the test and we were quoted 7-10 day turn around for results so I'm still waiting for the results. I would expect a private clinic would be able to offer results back quicker than 3 weeks.

Tbh though, at your stage I'd be more inclined to go straight for amnio if you will terminate.

@MorrisDancingViv going to see what ARC says today. My midwife is meant to be calling me today after her clinic so I guess I can discuss it with her also.

I think I've decided that I want to go for the amnio. I'm just terrified about the risk of miscarriage. It's amazing how pregnancy can so quickly go from amazing to absolutely heart wrenching. This is so hard.

I was in a similar position in that I had to decide whether to have an amnio at 25+3 after an anomaly was detected on a scan. Like yourself I found the decision extremely difficult, and made worse by the fact I was so far along. What made my mind up is that based on my reading an amnio can cause you to go into preterm labour in the 2 weeks following the procedure. This is called a miscarriage, however because I was already 25+3 I decided not to have it because of the risk of going into labour where the baby could survive but perhaps having worse complications due to prematurity. This might be worth discussing with ARC.

I’m so sorry for what you’re going through, it’s a nightmare situation.

I've spoke to ARC and they were very reassuring. They talked me through amnio and what the risks were. I just have no idea how I go about asking for it to be done... do I ask my midwife? Or call the antenatal clinic who I saw yesterday?

@Nichola2310 thank you. I'm really confused about it all. One consultant told me not to worry and it's most likely fine, yesterday I was told to worry and that I should consider amnio. ARC agree with the first but of course can't rule anything out. It's such a hard decision to make.

@Guacamoledip would still love to know why you think this is a wind up.

*spoken not spoke

Does your consultant have a secretary’s office that you can ring?

@Nichola2310 I have no idea. Calling the antenatal department now to check but it's just ringing out..

Perey please just ignore guacamole and their vile contribution to your thread.

My amnio (I also decided to have one in the end) was totally uneventful. The chance of something going wrong as a result of the amnio was much much lower than 1% in my hospital. In your situation I also wouldn’t want to wait any longer (if you do decide to have the amnio).

I feel for you so much. It was a fucking horrendous time in my life (the worst, actually). And though my baby and I were fine eventually (after a long and bumpy road unrelated to the amnio), I will never forget that dark time in my life where I was in limbo. Hang in there xxx

Thank you @DifficultSituation999 - the hard bit is knowing that all the tests might come back ok, but if they don't, we will have to have the amnio anyway. It's deciding whether to have the amnio and take the risk or to just let nature take its course. I just don't know that I would recover from such a late termination, if it did come to that...

It really is limbo.

That's me all booked in for amnio this week

Good luck - I really hope all ends well for you and your baby

Thank you @FliesMoths - I'll come back and update and hope that it will maybe help someone else in my situation in the future when searching for similar issues on mn.

@Pereybutton I lurked on your thread a little yesterday, but just wanted to say I have everything crossed for you.

I sincerely hope everything goes well with the amnio and that the baby is ok. Just remember, whatever decision you have to make afterwards is your decision. Nobody can tell you whether that is right or wrong, because they aren't in your shoes.

for you at this difficult time.

Thanks @Stephisaur - I nearly cried reading your post. The support on mn is amazing. I'll come back at some point and update

I've just spoken to the hospital and they only did 16 amnios last year but none of them ended in miscarriage. 16 sounds really low...

@pereybutton I think a lot of people would rather just see what happens. My SIL wouldn't even have the Nuchal Translucency or blood test. They were happy to keep the baby regardless of any issues.

It sounds very promising that the hospital haven't encountered any miscarriages

I spoke to ARC, who were really so helpful. How did I not know they exist already! Passed on to my doctor friend who's going to pass on to his colleagues so they can then pass on to their patients who have any worries 

Amnio tomorrow. Completely terrified...

(Posted this on my other thread but just wanted to say thanks to everyone who suggested ARC. Brilliant)

Hope all goes well with the amnio. Fingers crossed for you.

Please don't let anyone make you feel bad for your decisions. If you ultimately have to terminate then it's the correct decision for you and your family. It's not an easy decision to make but sometimes a necessary one.

Luckily I have never had to make it but we did have a harmony test in my first pregnancy and had the results been positive we would have definitely discussed termination. No one knows what they would do in that situation until they live it.

Good luck

@MadeForThis thank you. Really desperate that it doesn't come to that. I love my little one so much already.

I’ll be thinking of you tomorrow @pereybutton 💐

Thank you @Stephisaur

I hope you're OK OP. xxx