In tears after 20w scan - AIBU that I should have been told more about this?

[RevoltingPeasant]

Today I had my 20w scan for a much wanted baby.

I found the sonographer a bit difficult as he clearly hadn't read my notes and made a couple of slightly odd comments. However what has really bothered me is that he discovered a potential abnormality in the baby - renal pelvic dilatation (RPD). Because of this I am being referred back for a scan at 33w. He wasn't able to give me any information at all, not even a leaflet.

I have become increasingly upset about this since as googling has revealed some things-

• some babies with this condition have it spontaneously resolve itself before birth but others need to have surgery after birth. So basically it can be totally not serious or quite serious.

• this condition has been associated as a "soft marker" for Downs Syndrome as here: NHS link. Some trusts do immediate follow up scans because of this, but this possibility wasn't even raised.

I am doubly worried as I actually have a kidney condition called hydronephrosis which pretty much is the same as RPD. But the sonographer was even aware that I had it, despite it being all over my notes, or that I am a high risk pg under consultant care because of this. He was really surprised when I told him, but when I asked if my condition was linked, he just shrugged.

As a matter of fact I have a cons appt early in Oct but he obviously didn't know this so as far as he was concerned this was all the info I would have till 33w.

I am really upset right now but please be straight with me, should I have been given more info? Am I wrong to think that if he is giving out news about abnormalities he needs to give some kind of stats or context or likely outcomes or something ?

Strawb yes that's why the 33w scan is happening, and I'd be fine with that except that other NHS site suggests it can be linked to something much more serious. I've actually had that operation (pyeloplasty) myself :)

Ellie my hunch is that I saw no one because the sonographer didn't flag it up. He just booked a rescan with the receptionist but didn't tell anyone so they weren't to know.

Madthings thanks xx

Rev He definitely should have done more for you, that's just crap :( I agree that you should ring your Drs tomorrow and leave a message for them to call you - it will save you having to try to get through on monday morning. I had a friend whose DS had this too and it was all fine. But she didn't have your complications, so yes, you need to see someone who can talk you through this. Try not to get stressed about it over the weekend OK. x

Hello again OP, have you seen this?
www.liverpoolwomens.nhs.uk/Library/our_services/maternity/FMU/Renal_Pelvis_Dilation.pdf

It is actually very reassuring, the Down's link is quite rare (for every 200 babies with RPD, 199 will NOT have Down's), the chance of it resolving spontaneously is also high, and if it doesn't, the chances are that any resulting issues are minor.

Hi LittlePeas yes ironically that is the link that upset me :)

I had been told I have a 1:1900 chance of Downs and now it seems to have jumped to 1:200 and I'm struggling to think why no one raised this at the hospital. I think the sonographer probably didn't know. I don't want to blame him unfairly, though.

Sorry revolt I did think I was probably telling you stuff you already knew! For what it's worth I would have expected the sonographer to pick up other markers for Down Syndrome at the same time if they were present.
My DS does have an unrelated cranio condition that was picked up at the same time as his kidney, he's the only one i've ever heard of with both! All the other little ones on the ward when he had his op just had a straightforward kidney dilation with no other issues at all.

I hope someone can give you some reassurance soon, if your already under consultant care I would be tempted to call their secretary and bring your appointment forward.

Oh an no one ever mentioned the possibility of Downs to me (and I saw a renal specialist for a scan)

This also came up on my 20 week scan. I am on London and was booked in for another scan 2 weeks later. My baby's was borderline but they still booked me in for another scan to check. At the second scan both kidneys were within the normal range but they have still booked me in for a further check at 32 weeks. At my second scan I complained because the previous sonographer hadn't given me any information on the condition and like you, I had to google. They were very apologetic and provided a lot more detail. Downs syndrome wasn't mentioned. I don't think you can just read across a 1 in 200 risk because presumably most babies who have both Downs and RPD will also have other Downs markers, and you said your baby's nuchal fold was fine.

It might be worth contacting your midwife or the ante natal unit at your hospital to see if you can be booked in for an earlier scan like I was. I found the second scan much more reassuring than the first.

Good luck!

Op 1:200 is low risk is is 0.5% .
I said not to push for an amnio at twenty weeks as if you got bad news you may feel rushed into making a decision that you you could regret. If you had a termination at twenty plus weeks you would go through labour and deliver a perfectly formed almost viable baby. Nobody wants their child to have Down syndrome but a child with Down syndrome still has the potential to lead a happy fulfilling life.

My dS was found to have this plus another soft marker at the 20 week scan. all I got was a leaflet on RPD and rebooked for scans at 26weeks (and 4 weekly thereafter as I was already high risk) He was fine at birth. I was well looked after.

SoonToBeSix - I don't know about Rev but I find your post offensive and self serving.

Not really the issue here soon and not something the OP asked to be preached at about either

Thanks so much to you all

Six I understand that this is controversial and it's really not an easy thing to discuss, but I'm afraid DH and I have already decided that if we knew we were having a baby with Downs we would,terminate. This is in no way a comment on babies with DS but I have personal experiences that have led me to this conclusion.

However I thought this was a decision to be made at 12 w not 20. Am now finding the prospect a lot lot harder. Anyhow probably pointless speculating as the chances are so low anyhow. And yes I will ring the MW first chance. Thanks to everyone again xx

I had an anomoly scan at 20 weeks due to a Downs soft marker. My sonographer was actually a Doctor as they were quite interested in the soft marker issue but her manner was extremely clinical.
My advice would be to push for another scan/more information.
At 20 weeks they would have picked up more markers for Downs [my scan was actually a nuchal fold referral which turned up a marker] due to the higher than average likelihood of issues such as heart problems.
It sounds to me as though this is a ruubish communication issue :)

Rather than an amnio and it's risks what about having the Harmony Test? I would also consider having a private scan at the FMC (they are just brilliant) if you can get to London and can afford it. Hopefully either/or would put your mind at rest.

Thank you Jenny. Do you think so? I really hope you are right. And I hope your baby is okay, with or without DS

Lucy my fear is that the Harmony test takes 2-3 weeks to come back which might be too late. Although at least we would know! We are thinking about it.

My first child was discovered to have dilated renal pelvices at a late emergency scan at 37 weeks. Not much was said to me other than 'don't worry' and rushed our of the door. Naturally, I panicked. Dd was on antibiotics for her first 6 months to prevent any uti from developing whilst they scanned her kidneys and checked their function. Hers rectified themselves and she is now 4 and totally fine. Hope this reassures you as I remember the panic I felt and the frustration that I had to search the Internet for information instead of being reassured there and then.

My dd ihas just turned 16. I had a very similar experience at my 20week scan in 1998.

She has bilateral hydronephrosis. Leads a normal life dping all the same things as her friends. She sees consultant 2xper year.

I don't think they c an tell you any more at this stage abd I rdcall coming away tearful scared and worried.
It was really pkated down with me until I went in for delivery when they then told me baby would be whisked away at birth and check by the paeds. The room was full of people at delivery but she was back in my arms soon enough once they knew no immediate action was required. We were referred to urology and seen at 10days.

I cant say what will happen with your baby nut things obviously have not changed much in 16:years because I was left to just get on with my pregnancy like you with no further info just a nagging worry.

All I can suggest is that you make an appointment to see your midwife or gp asap to discuss further. They may be able to get some answers for you.

Ask for consultant appt to be moved forward. Chances are it won't be long term problem....
Get amnio or harmony test if you want to rule out ds for sure but remember there are other conditions too though ..... Some you can't test for antenatally.

The risks with amino are lower later in the preg I think?

But yes a detailed scan at fetal medicine centre is a good idea. I went there for Michael scan with ds3 as my local hospital didn't offer them.

I am very saddened that 15 year's later people are having the same experience we did! Fgs they must know pregnant women will worry! Why can they not communicate better!

Once this is all sorted do complain!

Btw when I went back for the scan at 32 wks it was done by a Dr not a sonographer. His English wasn't great, and his bedside manner was crap. He scanned me and didn't say a word and then said "there is a problem" and left the room! I broke down in tears obviously!

He came back with a midwife, turned out 'the problem' was He couldn't work the machine and make it print the little pictures you get!

Anyway the midwife seeing I was upset and realising why then did s really good scan pointing put fingers and toes etc and letting us have a good look at baby and printed out loads of pictures for us :)

You will get a good Dr I hope and your midwife will hopefully set your mind at rest.

But God it's bringing back memories and I am cross this type of thing is still happening!

It's all worth it though I promise!

If you get late diagnosis of ds or other condition considered serious you can terminate right up to term. So it won't be "too late" for you to take that decision.....just harder as you more pregnant.

You do not have a 1:200 risk of Downs.
1:200 babies with that kidney problem have Downs. Many of those will have other abnormalities on scanning and abnormalities that give a high risk on nuchal and blood testing.
If you calculate the chance of a baby with that condition having Downs and a normal scan otherwise and a low risk on nuchal/ blood test assessment, I think it would be very small.

revolting this is a horrible thing to have to say bit you say it will be too late? I assume you mean the 24wk cut off for termination? If your baby does have downs syndrome, which is highly unlikely! Then if you wanted to abort the 24wks cut off is irrelevant as it would count as a medical reason to terminate that is 'allowrd' past 24 wks. Obviously it would be better if you could find out sooner rather than later. But the chances are it is not a decision you will have to make. But I wanted you to know you don't have to worry about that cut off.

Ds1 was checked over at bbirth but no room full of Drs and he wasn't whisked away, I got a cuddle etc first and he had a scan, just ultra sound on his kidneys, the next day and then antibiotics were prescribed.