Nuchal scan follow-ups

[Marina]

I had a nuchal scan yesterday and the results, age-adjusted, were good enough for us to decide not to proceed with invasive testing.
Because of the above decision we have been offered a further specialist scan at 20 weeks, called an echocardiogram, which will happen at the Harris Birthright Centre at King's. It will look especially closely at the heart, which is often affected in babies with chromosomal disorders, apparently.
We came out from this scan feeling very reassured (although it happened at our local hospital, they have a policy of inviting Harris staff in to do nuchals and advice on follow-ups). But now I am wishing I had asked the doctor point-blank if our decision to decline CVS/amnio was the ONLY reason for his referral, or whether I failed to pick up a clue that he saw something amiss. The printout I was given to take home states that everything was OK.
I think this is a classic case of me fretting too much yet again, but I wondered if anyone out there had a similar referral in these circumstances.
I'd also like tips on what to expect from King's. I know the centre is a fantastic place with specialist staff etc, but the TV documentaries suggested it can also be horribly busy. We have an early morning appointment - would it be better to leave ds with someone?
Thanks for any comments!

Marina, I'm so pleased for you. I don't believe there is anything that has made them refer you in this way. You can always telephone them to make the point you wished you'd made. I don't know your age but when I was pregnant with dd2 I was 39 and went the same route. I had nuchal scan at 10 weeks and everything looked great. This, combined with a low risk blood test result made me decline amnio. I think that after a certain age, probably 35 in my area they automatically assume most people want an amnio. Personally I wanted to resist all invasive tests because of miscarriage risk which I assume is your reason too. Although my 20 week anomaly scan was not at King's it was done at one of the best pre-natal testing places in the country (where they train midwives,etc) and was very thorough. Having said all this reassuring stuff, I was still worried the whole of my pregnancy as you do!!

We had an afternoon appointment for DS1's nuchal scn and had a 2 hour wait. With DS2 it was 9:30 and we were seen straight away. If you can, it's probably best to leave your DS with someone, just in case you get delayed. They have a policy of seeing emergencies first so you could get pushed back in time.

Why not phone and ask about the echocardiogram? If the results say all was OK, there's probably nothing to worry about and this is just something they offer people.

Marina, just saw your message here. Glad all is well. Are you thinking of phoning the doctor to ask him whether the referrel is routine? It's so easy to forget to ask all the right questions at the time.

Marina - cannot imagine for one moment there is something the Dr isn't telling you. He would not secretly think something may be amiss, so send you for an echocardiogram to be sure at 20 weeks - if he really thought there may be a problem, he would A) be teeling you and discussing it fully B) sending you for another scan NOW.

Think you are fretting unnecessarily. Out of interest, when do they offer 'routine' scans at your hospital? I only ask, as my hospital doesn't offer echocardiogram specifically, but all our ladies are scanned routinely at 20 weeks, checking for any heart anomalies then. Sounds like you are in good hands there. Was it the nuchal scan you had, or the OSCAR?

Thank you all so much for your tips and advice, especially Leese for your quick reality bite! Much appreciated, Leese - I haven't been booked in yet with my community midwife team, that's next week. It was an ordinary Nuchal as far as I know and as well as the echocardiogram at King's I will have a 23-week standard fetal anomaly scan at my home hospital.
My corner of SE London is not trendy or home to a high-powered teaching hospital but our local NHS Trust got three stars and is excellent on women's services generally. I know I am very lucky to have access to this level of care.
Sobernow, I know just what you mean! Ours was a little yellow lozenge and pretty much where I wanted it to be.
SoupDragon, thanks for the advice re King's, too.

Hi Marina - just got back from a week's holiday - excellent news to hear that the scan went well - and presumably the spotting has completely stopped? I am CERTAIN you are worrying unnecessarily now - Drs tend to err on the side of caution when referring for tests etc IMO - but if they had a reason to worry I'm sure he/she would have said so - and possibly even tried to push you towards invasive tests as they sometimes do.
That said, pregnancy is a time for being utterly irrational and worrying constantly so you probably should ring and talk to someone about your worries as I don't think they'll go away completely until you do...

Marina
oh, this takes me back..I had a 1:250 risk of downs (after Barts blood test, nuchal measurement) and still decided to have an amnio. I guess we all need to ask ourselves what we'd do if we had a positive result from an invasive test,and if the answer is 'nothing' then there's not much point in going ahead with it, given the risk of miscarriage. My friend's brother in law is an obs/gynae consultant and he tells women to 'go home & forget about it' if their result is 250 or higher..but I feel it's much more personal than that..one friend had a 1:33 result and didn't opt for invasive tests (both of us had fine, healthy babies)

I had a risk of 1:80 and decided not to have an amnio, again because I would not have wanted to terminate the pregnancy, even if the amnio showed an abnormality. My obstetrician was very understanding, and commented that there are far worse things than Down syndrome/ spina bifida that can't be tested for, and we usually don't spend the whole pregnancy worrying about those! A risk of 1:80 sounds bad, but in fact, 79 babies will be normal. A risk of 1: 500 sounds good, but one of those babies will not be normal. There are plenty of mothers out there who would have been classed "low-risk" but still had a child with a problem, but the vast majority, tested or un-tested are entirely normal.

I think that was a rather long-winded way of agreeing with bundle!!

I had my ds at Kings and, even though it's scruffy and awful and chaotic and a bit dirty, surprisingly I never had to wait very long for any of my scanning appointments I took a book every time and hardly had time to read it. I have heard that not everyone is so lucky. I thought the scanning staff were fantastic and very reassuring and happy to give me all the information I needed (as I'd done a lot of research, I asked a lot of questions). Despite being 38 my nuchal was fine and the scanner told us, point blank, that in her opinion we shouldn't have an amnio, which I found very helpful. They subsequently looked very closely at his heart and cord for markers of any problems and found none and he was born very healthy. They have toys for toddlers in the waiting area and you can get food at Kings so it's really not so bad (unless you are stuck there for over a month as I was. Ye gods, hospital meals - is there anything worse???)

Good luck.

Thanks again, all. I was adjusted down to 1 in 352, bundle, so your comment about where doctors might draw the line was very interesting. Like Tissy, we both feel that termination following diagnosis of chromosomal abnormality is not a route we want to take, and the Harris doctor did not press the issue of CVS/amnio with us at all. When I get the paperwork through from King's I will ring the centre and ask for a bit more info on the echocardiogram - I don't have their phone number at the minute.
Mumsnetters might be interested to know that we also had the foetus' nasal bone measured - a new, further check for chromosomal abnormality that the Harris introduced last year. The result for this was also reassuring and I think we were very lucky to get this extra check.
Aloha, LOL re SE London hospital food. First time round I went right through both the standard and the "ethnic vegetarian" one I was in so long. Guess which won hands down...

Marina
interesting re: nasal bone measurement, I'll keep an eye out for that one. hope it all goes well for you, but I know like the rest of us, you won't stop worrying until the baby is delivered!

Kings was my hospital throughout my pregnancy with ds born in 1997. I had my nuchal and although the odds were good we decided to go for a CVS. I would phone if you have any queries re echocardiogram but I am sure they are just offering you this because they can rather than because you need it. I had an appointment at 2.30 - 3.00 pm for my CVS at the Harris Birthright but did not actually get seen until just at 6 pm so I would not take DS with you if you can avoid it. I cannot recommend the Centre more highly its a fantastic place and all the staff are great.