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No idea what to think of scan results

(6 Posts)
Allthequestionsallthetime Sun 23-Oct-16 12:04:56

Went along to 20 week anomaly scan naively assuming that everything was going to be fine. But baby was in a funny position, tech was in a bit of a grump and said between that and the fact I am BMI ++ she couldn't see enough but thought there may be bilateral talipes. Referred to fetal medicine.

Felt quite devastated, then realised after 5 mins on Google that the possible implications of bilateral talipes were much more concerning than the talipes themselves. Lovely hospital admin called and booked me in for a Monday appt (scan was about 3pm on a Friday).

Went for Monday scan with consultant in fetal medicine dept. Felt terrified, but was delighted to hear it was actually unilateral talipes. Consultant confirmed that this meant low risk of wider genetic issues. Went off feeling quite positive, having been booked in for a third scan that Friday at the other hospital the consultant worked at because it had better machines and there were a couple of bits the tech had seen but the consultant couldn't, again due to baby position.

Went for 3rd scan this Friday. Unilateral talipes confirmed - OK, I can deal with that - but then consultant mentions the hands. Turns out they were in tight little fists during 2nd scan and are doing the same during 3rd. As we are discussing one hand opens but the little finger seems to still be folded down. The other hand remains in a fist. Was booked in for another scan in 4 weeks time.

Left a bit dazed, did all the work stuff I had to for the day and then tried to find out what the significance of the hands would be. Of course immediately discovered links between club foot, clenched hands and Edwards. But I have no idea how worried to be because we only have one club foot and one hand that hasn't been seen open at all. I have emailed the fetal medicine admin to ask her to pass on some questions to the consultant about whether her main concern is a hand abnormality or a chromosomal issue, no idea if that's the way to get an answer or not. All other measurements have been declared normal, everything except that one hand has been seen, baby is moving at each scan. My notes only point to possibility of hand abnormality.

My mum has suggested a private scan (she is convinced it's all just worrying about nothing). But there doesn't seem to be any particular reason why a private scan will show anything more than 3 NHS scans, other than maybe getting lucky with positioning and movement. I've read that 3D/4D scans can be useful in diagnosing defects that are hard to see properly with 2D, but the only person I've read about using them for diagnostic purposes at a London clinic (Dr Maxwell) has retired. Can anyone recommend a place in London that does this?

Otherwise the best plan seems to be to do the Harmony test, I've found a place on Harley st that gets results in 5 days because they have a local lab rather than sending blood to the US. Since every concerning moment seems to point back to Edwards it seems sensible to just cut to the chase and find out whether it's a likelihood. But it's quite a lot of cash to spend if I am just being hysterical about it.

Has anyone got any experience of all of this, all advice or experience welcome. Am driving myself up the wall trying to work out what to do. It's all completely overwhelming...

KittyandTeal Mon 24-Oct-16 08:50:30

What a time you've been through and how worrying.

The clenched fists thing hit me as our dd2 had Edwards and crossed fingers plus frozen elbows. However, at 20 weeks many, many more soft markers were picked up. The fist and feet are markers for trisomies but my understanding is that they are only a worry along with other brain or heart abnormalities.

The harmony test is brilliant. I'm surprised they haven't offered you an amnio. When they picked up soft markers with dd2 they did an amnio same day so my guess is they aren't overly concerned. Sis you have the 12 week combined screen? My bloods were a little off on mine which also lead them to look for soft markers.

Can I also point you in the direction of arc, they are a brilliant charity and their helpline is so helpful when your in that horrid waiting phase. flowers

NeverAShadowOfDoubt Tue 25-Oct-16 11:06:40

Just wanted to share my story to let you know you're not alone. We are going through something similar where 12 week scan showed it was twins! Then came the NT measurement of twin B being higher than it should be. After combined screening with NHS we got a high risk of trisomies for twin B at 1:14 for Down S and 1:28 for Edwards and Pattau. Compared to 1:100000 for baby A. Add to that my maternal age of 35. Referred to Fetal Medicine where we declined invasive amnio and CVS due to risk to whole pregnancy so opted for NIPT which was a test called Iona. Waited for the results which came through as very Low Risk. 16 week scan showed baby b has bilateral talipes and slightly short femurs but NT measurement had returned to normal . Since had fetal echo which came back normal for both babies. Had 20 week anomaly scan at FMC and everything else looks normal apart from the bilateral talipes and the femur of baby b. Oh and he is a bit smaller in general than baby a, his sister. Today we have our next growth scan and I'm 24+4. Recommend ARC, they are wonderful. For us, apart from the cost, it was the next obvious step if we weren't doing the invasive tests. I think about the amnio and cvs, what mattered was what we would do with the information from results of the test if it was positive. Its been a rough road and an emotional roller coaster but you will get there. Only other thing I would say is STAY POSITIVE.

ImAMoving Tue 25-Oct-16 11:10:03

I think you are right, at the moment a private scan might not help much as you sound well and truest in the NHS system, but the harmony rests sounds a good idea, and I think they scan as well as the same time as that?

beansbananas Thu 27-Oct-16 05:59:46

Yes just to add I had a harmony test on Harley street and it included a very thorough scan. I too received very difficult results, although in my case it was downs and I did go ahead with the amnio to confirm the diagnosis. ARC are wonderful and really helped me through the whole process. It sounds like you've been through so much already so it's difficult to know what to say. But I do wish you the very best for the future and for your darling twins.

imjessie Wed 02-Nov-16 12:35:39

Have you had an amino or cvs ? I guess at 20 weeks plus it's an amino .

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