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high nuchal 4.8 1 in 5 risk - our story

(10 Posts)
weliveinhope Thu 06-Jun-13 10:09:36

I took so much information companionship and support from this site during what can only be described as a traumatic time that i promised myself i would post my own story when i felt able.

After three miscarriages this pregnancy was already a bit tense. this was not helped by constant bleeds that made me rush to the hospital sure it was all over again. So getting to the 12 week scan was my milestone. Even though i have one child (4yrs) i foolishly kind of forgot to be nervous even though i am at the slightly older end of the mum scale, i was just so pleased to have made it. So it came as a total body blow to hear 'we have a big problem'. The sonographer told as the nuchal was very high (Not as high as some people have to hear about i now understand) and implied we were pretty much screwed. 'Prepare for the worse' is the phrase that sticks in my mind. Total shock. I walked out like a zombie. In a few days time to got to speak to a specialist and they were pretty negative too. It seemed inevitable this baby was going to have serious chromosone issues or a heart defect.

Due to public holidays and staff shortages there then followed a nearly two week wait of turmoil for the CVS. I agonised about having it due to the miscarriage risk (what if i caused the loss of a healthy child by having one?) but as we were given a risk of 1:5 for Downs i felt we just had to know what was coming.

The procedure was stressful mostly because of my worry, not because it was painful. It was done at UCLH and they were brilliant. They let me decide on the day whether to go ahead and gave me plenty of time without judgment either way. I found out from ARC and on this site (who were amazingly helpful) that the miscarriage risk is linked to the practitioner and how good they are, so i checked that out, but being London they'd done masses of these tests, which helped in my mind.

Waiting for the results (a week rather than the usual 3 days because of weekends and more holidays!) was without doubt one of the darkest and strangest times of my life. I felt myself and my partner pulling in very different directions on how we would proceed if the baby did have downs. We didn't have the 'bringing us closer together' experience that some seem to. it was confusing.

The results came back and they were clear. I was elated. But anyone whose been through this knows there is a long way to go after that. Next there was the wait for the 16 weeks heart scan which we were told was also a serious risk. That took place for 20 minutes in total silence which nearly made me scream! But it was OK too. Then there was the wait for the 20 week scan where they checked all kinds of things - that was ok too. Now i am nearly at 24 weeks and keeping all fingers and toes crossed for a smoother ride for the rest of this much wanted pregnancy.

For all of you going through this now, know it can be OK whatever you hear and however dire it seems. For all those who did not or do not have as much luck, my heart really goes out to you.

ali23 Thu 06-Jun-13 13:22:38

Good luck to you. I wish you a peaceful pregnancy for the remainder of your time x

Fuzzygel Fri 07-Jun-13 06:31:54

Similar story but 6.5mm nuchal and 1 in 2 risk. Cvs, cardiac scans and anomaly scans all clear. Now 29 weeks and praying for a good outcome x

readyornot2011 Fri 07-Jun-13 20:24:59

Thank you for posting, I'm waiting on cvs results for a 4.5mm nuchal and this story is keeping me going

weliveinhope Sat 08-Jun-13 21:39:16

Thanks ali3 x. Fuzzy that is fantastic and sounds very positive and am imagining good things for you. Readyornot everything crossed for you and let us know. As you will be picking up it can be fine and do talk to ARC as they are such a friendly place even if you have nothing much to say.
Anyone who comes across this thread please do post your story or situation as i can't tell you enough how much they mean when you need them, and there is never enough!
Love to all you Mothers and Mothers-to-be keeping going thought it.

weliveinhope Sat 08-Jun-13 21:46:52

Oh, and one thing i also meant to say was - after a lot of frowning and sympathetic sighs from staff who broke the 1 in 5 chance risk of things being bad result, when i spoke to ARC they did point out that even that is an 80 percent chance that things will be OK. That really helped, not on every day i have to admit, but some days!

AuntPepita Tue 11-Jun-13 21:37:06

Thanks for posting this. It is very similar to my story. I had a 4.6mm nuchal and a 1 in 3 risk. It was all fine for me as well. We also pulled in different directions and I don't know how we would have resolved it if the result had gone the other way. Enjoy the rest of your pregnancy.


weliveinhope Wed 12-Jun-13 15:56:36

Thats interesting to hear AuntPepita, it put enormous strain on us and i don't know how we would have come together on a decision either. Hope all is well for you now. Its difficult to go on to enjoy the pregnancy because it feels very fragile, but i am getting there and more positive each day. x

devientenigma Wed 12-Jun-13 19:55:42

Just to add another dimension. With DS already in the family we needed to know. Blood tests came back low risk so no further testing. Nothing ever picked up on a scan. Yet my son was born with a severe heart condition that the scan should of spotted, quie a lot of structural problems. Then diagnosed with DS.

StormBird Wed 12-Jun-13 20:10:21

Slightly different story here, but I understand the turmoil. PG1 in 2010 ended in termination at 14weeks when we discovered the baby suffered anencephally, a chromosonal disorder incompatible with life, at the 12 week scan. PG2 2011 we got the the 12 weeks scan and discovered the baby didn't have anencephally, we were so relieved but then bad bloods and a nuchal of 3.8 bought our risk of ds out as 1:43. We had a cvs the next day and hadl to wait over a wknd for results, thankfully baby was fine and we went on to have a gorgeous boy. PG3 2012 had a termination at 15 weeks due to anencephally again, we were devastated. I'm now 17.wks pg sign of anencephally, the nuchal was 1.6mm and my bloods were good. Ds risk was 1:16000. We couldn't believe it. Had a 16wk reassurance scan last week which was good but now its the wait for that all important 20 wk scan. I'm hopeful, but theres alwaysthat bit of.doubt. To all those posting stories my heart goes out to you. Keep strong x

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