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Collecting opinions and advice....what would you do?

(15 Posts)
frogchops Sat 23-Mar-13 12:29:22

I know 'what would you do' is hard when ur not in the actual situation, but I'm hoping to get some opinions...
I'm not easily offended by anyone's views so don't think I might be!
Have had nuchal test completed on NHs which returned a high risk of downs at 1:140.
The midwife stressed that the cut off was close at 1:150.... But still I'm under that. I'm 29, normal bmi, no other factors and nuchal measurement was 1.5mm. All sounded pretty good to me. It's obviously my bloods that have returned some anomoly. I'm going to ask my mw the specifics about my blood results when I see her.
I was told that amino was available to me, which its risks of 1% mc. Slightly higher risk than the 0.7% of having a downs baby.
Lots of advice so far had suggested that I need to know what I'd do with the results of amino. The answer is, that we probably wouldn't go ahead with the pregnancy due to reasons personal to us, and I'm sure lots of others. My. Partner would like to carry on with our 1:140 risk as its only slightly into the high risk category. I'm not sure if I can overlook these odds for the remainder of my pregnancy. I'm 14+2 today so am outside the time for having harmony test and also could not afford it anyway. Any thoughts on how you might/have tackle the decision would be appreciated so much!

BabyHMummy Sat 23-Mar-13 13:07:01

i was crapping it at the thought of my results coming back especially as they took way longer than the 2 weeks we were told by the hospital! I had made the decision to have the amnio if it came back that i was at risk.

I know several people who have had them and not had mc after so was prepared to take the risk.

can you see mw before you have to make the amnio decision?

ghislaine Sat 23-Mar-13 14:10:39

I think there isn't a time limit on when you can have the Harmony test, more that the earliest you can have it is at 10w. Maybe ring up a few private clinics - there are lots of recommendations on the Harmony thread.

You can also have an amnio much later in pregnancy when the risk is tiny (even the 1% you are quoted is out-of-date - those figures come from the 70s when they used to do amnio without ultrasound) and more likely to lead to premature labour.

The key for me is how good you, not your partner, is with dealing with uncertainty.

frogchops Sat 23-Mar-13 15:03:35

Thank you..,, I know we can't afford harmony testing anyway, which upsets me more. I read so many amnio stories of people who just had the test without letting the risk bother them too much. I wish I could do this, but like my DP says, I would feel just awful if I had normal results and went on to miscarry a healthy baby.
Already the uncertainty is playing on my mind and I've only known two days. I know it sounds awful but I'm feeling slightly detached too confused

BabyHMummy Sat 23-Mar-13 20:19:18

i guess you need to ask yourself how you would feel if you don't have the amnio and you go on to have a baby with downs.

But if you have only known 2 days all these feelings could just be shock and knee jerk reactions. I would give yourself a few days to get your head around it before trying to make any decision.

craftysarahp Sun 24-Mar-13 09:26:43

if it helps
the scan 12 wks went fine on monday but on wednesday i had a call to say my bloods had come back with a 1:14 chance of downs discussed options and opted for cvs
had it friday and waiting for results next week hate the wait the worst bit if you want to know go for test small risk and depends on dr experience the biggest risk during test but if heartbeat after test then risk reduced
good luck so hard to make right decision just want our result
fingers crossed

hmotb Sun 24-Mar-13 18:21:10

I was in a similar situation to you in summer 2011 following my 12 week scan. For my husband and I there was no question, we went for the amnio. I spoke to the midwife three times in the 2 weeks leading up to the test, including to ask how often the consultant carried out the procedure. ARC recommended that if a consultant carries out at least 50 procedures a year, the risks are very, very low. I would recommend you contact ARC because they offer lots of useful information and were very reassuring. The test itself was not stressful or painful. I believe the risk of mc is immediately after the test which is why you have to stay in the hospital for a little while after. I took it easy that evening and the next day because my tummy was quite sore but felt fine after that. Waiting for the results was hard. We already had two children at that point and I work so keeping busy really helped. My results came back a few days later and we have a beautiful, healthy 13 month old now. The test also meant I could enjoy my pregnancy knowing (as much as anyone can know) that my baby was healthy. I would have the test again if I needed it without question.

sleepyhead Mon 25-Mar-13 23:59:38

This is what I would do, as that's what you asked. I'm not saying it's what you or anyone else should do as that's too personal to the individual/couple imo.

My experience this pregnancy was that I was in a similar position to you. Good scan, called back after bloods as I was high risk. I'm 40, so similar age as well.

I had a couple of days after getting the letter to think about what I wanted and to discuss it with dh. We didn't get the risk level in the letter. We agreed that 1:100 or better felt like low risk in practice to us. In fact, we agreed after thinking about it that better than 1:50 was a risk we could live with. We took a lot of time to think about what these numbers actually meant, tried to think about situations where that number of people would be gathered together, what that would look like. It was hard, I don't think human brains are really geared up to quantify risk in a meaningful way.

Anyway, I went to the appointment and I didn't feel too bad about it as I'd come to terms with what the NHS considered high risk and what dh & I considered high risk, and I was sure that we'd be ok. Our result was 1:27 so that was a blow. I still swithered a bit about the idea of amnio - it was swapping one risk for another - but I felt that I couldn't go through the pregnancy without knowing, even though our risk still meant there was an over 94% chance all would be fine.

I had the amnio at 17 weeks. I got the initial results back in just over 24 hours which were clear. I got the full results back about 10 days later, also clear. I'm now 38 weeks.

I wish you well whatever you decide. I personally feel you are low risk and I wouldn't have gone ahead with amnio with your results - your age will also influence the figures. The fetal medicine midwife said that even at 1:27 my blood results weren't that bad and we probably wouldn't have been there if I'd been younger. But, there are no guarantees (not with 1:2, not with 1:27, not with 1:140, not with 1:20000) and only you know what level of risk you can live with.

Fingers crossed for a happy, healthy pregnancy x

JellyCurls Tue 26-Mar-13 06:47:28

frog first of all I am sorry for what you are going through. I can't tell you what to do but I can share our story and that may help.

With DC1 they hadn't invented the nuchal test, only bloods at 16 weeks. Our bloods came back clear but at our 20 week scan a serious brain malformation was found. A specialist scan later found a problem with top of spine and heart defects too. We were told baby probably wouldn't survive as had a serious chromosomal problem, I was 24 weeks by this point. DH and I needed to know for certain so had the amino. It was a painless procedure with a few days rest afterwards while we waited for results. All came back clear but baby still had serious problems. We decided not to abort as by now baby was moving and still growing.

Dc1 is now 6 and is the light of our lives. She doesn't have a known condition but has taught us so much. It has not been a straight forward journey but we are learning together.

I guess what I trying to say is that we needed to know to prepare but then couldn't abort when the time came. She may not be the perfectly healthy child we dreamed of having but she is, and always will be, our baby

We didn't have the nuchal test this time as even with odds of 1:1000 you still might be the one. Please, if you are going to make yourself ill with worry over next 6 months opt for the amino, your baby needs you to be not stressed. Take care of each other x

madwomanacrosstheroad Tue 26-Mar-13 07:03:07

Personally i did not go for tests even though i had four pregnancies over 35. My rake was either i am pregnant and going ahead woth it or not and nobody can ever guarantee me a perfect outcome. That said i would support any woman in whatever choice she makes. Three of the babies were okay. The last one, a surprise in my mid forties was born dead at 21 weeks. He had downs, a heart problem etc. Traumatic as it was i am glad i did noy go for amnio as i would always have wondered if that had contributed to his death. 80% of all downs babies are miscarried or stillborn. Also, as previous poster pointed out, amnio only scans for a number of common and defined conditions. So while it will tell you baby does not have downs or edwards it will NOT tell you yhat baby will definitely be healthy.

frogchops Tue 26-Mar-13 13:06:21

Have found that my bloods included hcg at 2.something (can't remember) and Papp-a was v low at 0.3 so altho my age (29) is fine its definitely this that skewed it.. Am thinking of having aprivate marker scan to look for more signs before i decide. :-/

frogchops Wed 27-Mar-13 17:00:18

Cutting an extremely long story short am possibly in the position to consider harmony testing. I won't bore everyone with how/why and the details you've already read, but now I'm looking for opinions on this and if anyone has/knows of anyone who has had it. :-/

sleepyhead Wed 27-Mar-13 17:09:26

I didn't have it, didn't know about it at the time and couldn't have afforded it anyway, but I would go for it if I were you if you feel that you can't live with the risk level you've been given and the alternative is an amnio.

The amnio was extremely stressful, both making the decision to have it, the waiting for the results, and the worry about possible miscarriage. If you can find the money for it it then I can't imagine a better use for it than to avoid the miscarriage stress.

frogchops Wed 27-Mar-13 17:30:39

I just figure if I can access it, there will be enough stress regarding the results let alone the worry of mis carrying. It's so expensive but I'm hoping money well spent.

dopeysheep Fri 29-Mar-13 20:33:09

Yes I would prob opt for the harmony test. BUT even that doesn't give you a definitive result although it is way more accurate than the nuchal/blood combined risk numbers.
Also I think it only tests for the three main trisomies, downs, edwards and pataus.
An amnio offers a more detailed chromosome count, but still can't guarantee a healhy baby.
Good luck with your decision it's such a horrible.time when you are really feeling vulnerable.

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