Will NHS perform a CVS if risk was lower than 1:150? Would enlarged bladder as well as high NT help convince them? Any experience?

(12 Posts)
CamelKnees Sun 07-Oct-12 21:16:07

I am absolutely terrified. Had a horrible 12 week scan experience last Friday. Sonographer told us she had serious concerns that there was something wrong. Nuchal was 3.2mm, bladder was enlarged and she "didn't like the profile". However risk of downs only came out at 1:186. Sonographer gravely recommended further diagnostic tests but I'm conscious that the normal cut off for offering diagnostic tests is 1:150. Our scan was done privately so I'm super worried that when I finally get hold of our midwife in the morning she won't offer me any other tests as we're officially low risk. Has anyone been offered diagnostic tests even with a result that is technically low risk?
Thanks in advance

olympicvibes Sun 07-Oct-12 23:14:35

Hi. Sorry to hear you are so worried. You said that it was a private scan, have you had an NHS scan too? I'm wondering if there was a reason you got a private scan-were you worried about something and wanted a private scan or are you only having private care?

You say you are officially low risk though, is that right? Did the sonographer give you a written report of the scan? Talk to your midwife who is there to reassure you and also offer advice when you are worried. I hope you can stop worrying tonight until you have talked to more health professionals tomorrow. I can't offer much advice sorry-I haven't had any similar experiences but I'm 14 weeks pg and I did have a horrible sonographer experience first (emergency)scan at 7 wks which was an extremely stressful time and he wasn't helpful. Luckily we have had a much nicer sonographer since. What exactly did the sonographer say she "didn't like about the profile"? Did she make things clear for you to understand? Hope you are ok.

katiecubs Mon 08-Oct-12 09:23:22

I would speak to the clinic/sonographer again if what they said at the scan doesn't correlate with the report.

If your can't get diagnostic testing on the NHS could you get that done privately too?

CamelKnees Mon 08-Oct-12 09:42:58

Thanks for the replies. The scan was done privately as NHS couldn't fit me in for a 12 wk scan until I was nearly 14 weeks and I wasn't prepared to wait. Mostly due to having to support a good friend through a very traumatic experience earlier thus year when she had her first scan late. When they then found abnormalities it was too late for a CVS but too early for an Amnio. She had to wait then eventually found out at 17 weeks that baby would not make it. She ended up having to go through L&D which could have been avoided if she'd have had her scan on time... Anyway that's a bit by the by - the scan was private but I'm under NHS care.

The sonographer didn't explain what she didn't like about the profile - even when I asked her. Her level of concern was definitely out of kilter with the down's result. The more I think about it the more I think she did a terrible job of explaining things to us. She took her measurements gave us her condolences (she actually used that word) then told us we'd need a CVS. Thankfully I spoke to a helpful midwife this morning who has booked me in to see a consultant on Wednesday. This is going to be the longest 2 days of my life.

StripeyOrangeTrousers Mon 08-Oct-12 11:08:01

Hi, I'm really sorry to hear about your experience. It sounds like the sonographer handled it really badly. Fwiw, I was given a Downs risk of 1:167 at my NHS 12 wk scan. Even though 1:150 is technically the high risk cut off at the hospital I'm at (and it does vary by area), I was immediately offered counselling and the option of a CVS if we wanted one. After deliberating for 24 hours, we went for the CVS and I'm glad we did as it was uncomplicated and came back all clear. I think it's really hard to know what to make of all these numbers, especially when they're supposed to represent highly emotional choices, but try to focus on the fact that 1:186 means 185 babies with the same measurements will be normal. Good luck.

katiecubs Mon 08-Oct-12 12:25:14

Does not sound like the sonograopher was doing her job very well - i would complain if i were you. The fact is that the odds are very much on your side so she is very misguided offering condolences - in fact even if you had a very high risk number she shouldn't be saying things like that until you have had a diagnostic test!

I hope the consultant is much more help and if you do go ahead with further tests that you get the all clear - am sure you have nothing to worry about.

CamelKnees Mon 08-Oct-12 12:59:30

Thanks again for your replies. They really are reassuring. The only thing that's playing on my mind is if the combination of symptoms she saw indicate a condition that wouldn't be picked up by the down's test. either way we'll need to wait and find out, it's just a shame we've got to do so under this big black cloud that was almost entirely created by the sonographer's approach.

olympicvibes Tue 09-Oct-12 14:38:18

Let us know how you get on and good luck for Wed

CamelKnees Tue 09-Oct-12 19:32:24

Thanks olympic. I'll report back tomorrow. Feeling surprisingly numb.

katiecubs Wed 10-Oct-12 13:20:10

hope it all goes well Camel x

CamelKnees Thu 11-Oct-12 08:52:50

Thanks for kind words. Yesterday went ok. Consultant discussed the feedback we'd had from the private sonographer and said that it was too early to be seriously considering the life threatening condition she had suggested the baby might have. Also explained that he wouldn't be concerned about an over large bladder on the basis of one scan. He ordered us an urgent scan so he could get another look at the bladder and a second opinion. New sonographer wasn't unduly concerned. Bladder was empty (which is positive as means it's working and not permenantly distended). She was not worried about baby's profile either. Nuchal measurement was still over 3 though which is obviously a concern. They took new bloods yesterday so they're going redo the risk factor.

It was a long day and I feel a bit wrung out. We were reassured by everything everybody said but are conscious we're not out of the woods yet. We won't get nuchal results until next week so I guess it's just a waiting game until then. I don't really feel like I'm coping with all of this very well which makes me feel a bit lame as we've not actually been told anything is wrong yet.

vrose123 Mon 28-Jan-13 10:56:12

Hi, how did it work out for you camel knees? How is the baby's bladder now? We had a similar issue at our 12 week scan. After getting pregnant via Ivf and donor sperm, our 12 week scan revealed our little one had an enlarged bladder. We decided to continue with the pregnancy and by 20 weeks things were looking ok. However, it has now been found out that other pregnancies with this donor has also conceived babies with an enlarged bladder. We have been called back to have another scan today at 21.5 weeks. Not sure what it all means!

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