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AIBU?

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

121 replies

RevoltingPeasant · 19/09/2014 22:03

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 ?
OP posts:
RevoltingPeasant · 19/09/2014 22:06

I am devastated as I don't know now whether I should be pushing for an amniocentesis ASAP as I'm already 20w 4d and if I do have a diagnosis of Downs I would obviously need to make a decision one way or another. I know it's unlikely my baby has Downs but my risk factor has suddenly jumped massively according to that NHS link!

OP posts:
Daddypigsgusset · 19/09/2014 22:06

I know nothing about anything but 13 weeks is a long time to see what's happening. I'd be Straight on the blower to my mw for better explanation.
Ps. I hope it's all nothing and baby is fine x

Noideaatall · 19/09/2014 22:09

Phone up your hospital & ask to make an appointment as soon as you can with your consultant. If it isn't soon enough, go to your GP /midwife.
It's pants but I have found you need to be so assertive with pregnancy concerns - think what you want to happen (i.e. immediate re-scan etc) and then go & tell them you need that. And keep asking if they try to put you off! I hope all is ok.

NormHonal · 19/09/2014 22:09

Definitely get on to your midwife/GP for a better/faster answer than that. Hugs. x

superstarheartbreaker · 19/09/2014 22:10

I had a soft marker... A cyst in the brain. Dd is fine. Try not to panic.

wingcommandergallic · 19/09/2014 22:10

Did you not see a midwife after the appointment? It's not up to the sonographer to explain, in my experience. They merely identity and then the midwife will talk everything over with you. Please call and make an appointment as soon as possible. There might even be a specialist mw you could talk to.

HeartShapedBox · 19/09/2014 22:13

it seems far too long to leave u stressed and worried Sad

I'd contact your mw for advice on what to do next xx

5madthings · 19/09/2014 22:15

My ds1 had this, like you I was told at my 20work scan and given bugger all information and left in tears.

Thankfully I had a fab gp who did some research and arranged for me to see a consultant. I had an extra scan at 32 wks and then ds1 was scanned after birth. He was put on a very low dose of antibiotics to prevent a uti, just in case. He then had further scans at 6 wks and 3mths when they found it had resolved itself. It's quite common apparently and is generally something that resolves itself.

Ds1 is now 15!! And a hulking great teen with size 9 feet in pperfect health.


Go see your midwife and try not to worry xx

RevoltingPeasant · 19/09/2014 22:19

Thanks superstar. I am 35 so have other risk factors too though my nuchal fold was okay.

No, no MW appointment. That was just it. Rescan at 33w.

I am seeing a consultant in a couple of weeks anyhow and originally I'd just rolled my eyes to myself and thought I'd leave my questions till then.

But that link has upset me as if the baby might have DS, I would be over 22w by the time the consultant appt rolls around, which would not in practice give me time for screening and decision making.

OP posts:
RevoltingPeasant · 19/09/2014 22:20

madthings thanks. Yes I know that is the general prognosis but as I have kidney disease already I don't know if that complicates things? Also the DS link which wasn't even mentioned but some NHS trusts obviously take really seriously......

OP posts:
Oldraver · 19/09/2014 22:22

When a potential problem showed up on DS2's 20 week scan they got me in within a few days to see a consultant pre-natal diagnosis person (cant remember the actual name).

I would push to see your consultant or midwife as soon as possible

SoonToBeSix · 19/09/2014 22:23

No don't push for an amnio to test for Down syndrome , you are twenty weeks.

ColdCottage · 19/09/2014 22:23

I was on a trial so scanned a lot.

I was told that many things show up on scans that they now just ignore as they don't often mean anything so please don't worry to much and wait until you speak to your mw.

Agree someone should have explained straight away.

I would call the reception where you were scanned in the morning and ask for a call back explanation and then a follow up scan early next week if you are still worried.

Good luck. Thanks

RevoltingPeasant · 19/09/2014 22:24

Six what do you mean? I thought they could do amnio after 20w, even if it wasn't usual. Am I wrong?

OP posts:
5madthings · 19/09/2014 22:25

My trust said nothing about the downs syndrome link, thankfully I didn't have Google!

My gp did research for me and it was then mentioned bit not considered a big risk as everything else was fine.

I am not sure of there is a genetic link re your kidney issues? It could just be a complete coincidence that the baby has something similar.

Call your midwife and get her to sort you an app with your consultant asap so you can ask.

It is terrifying, I remember how upset I was.

The odds are that its fine and baby is just making you practise for parenthood, they worry you sick!

I will be thinking of you xxx

5madthings · 19/09/2014 22:26

Yes they can do amnio at any point in pregnancy op of that is what you want.

Speak to your midwife.

5madthings · 19/09/2014 22:29

Btw i was told this was something that is picked up regularly and they don't really know why it affects some bbabies and not others but honestly it really is moat likely to be nothing serious. I know you are always going to worry about worst case scenarios, I did. But try not to.

Call your midwife first thing tomorrow and leave a message if you have to. Say it is urgent and you NEED to see someone. They absolutely cannot leave you to worry like this.

Only1scoop · 19/09/2014 22:31

Op I'm sorry to hear you are worrying....have you considered a private anomaly scan for reassurance .... I had one and it lasted about over 30 mins. I booked it with senior consultant and he literally checked every finger and toe and explained everything in depth.

I know if I had to wait 13 weeks I'd be worrying although I'm sure as others have reassured all will be fine.

Thinking of you

RevoltingPeasant · 19/09/2014 22:32

Madthings thank you so much, I'm going all teary again Flowers

I don't think anyone will be around on a Sat but will ring up first thing on Monday, I think.

I know it's unlikely to be anything, but that link has freaked me out - it's Liverpool Women's Hospital policy from 2014 so it seems respectable and I can't think why my trust seem so different.

OP posts:
elliejjtiny · 19/09/2014 22:40

That doesn't sound right. When the sonographer picked up an anomaly at my 20 week scan with DS4 (cleft lip) I was ushered into a comfortable room with a sofa and a midwife came in and explained things, gave me a leaflet and organised a scan the next week with a consultant.

strawberrypenguin · 19/09/2014 22:44

My DS had this, in his case it was picked up very late when I had a 35 week growth scan. He had a blockage at the pelvic urinary junction from one of his kidneys meaning that the kidney couldn't function as it should an dilated (sorry, you probably already know this but just in case anyone else is interested!) My assumption is your scan at 32 weeks will be to see if the dilation has continued or resolved itself.

In my DS's case his was quite pronounced and he was put on antibiotics from birth (we got very good at giving him oral meds!) to prevent uti's and he was operated on at 4 months to correct the junction. He is now very nearly 3, has good kidney function - we only have yearly ultrasound check ups and has never had a uti.

LittlePeasMummy1 · 19/09/2014 22:45

Hello, try not to panic, this is a fairly common isolated anomaly and I think it can run in families. I'm sure your midwife will be able to give you some more reassurance.

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5madthings · 19/09/2014 22:45

There may not be anyome there but someone will check messages, they sre contactable so please call them tomorrow and they can sort out you seeing someone to set your mind at rest.

Now do you have some chocolate?! And a nice warm drink, snuggle up with a good film, something stupid and funny.

AmysTiara · 19/09/2014 22:52

I was told the same with DS2. I had a scan at around 30 weeks to check again but there was no urgency about it i was just told not to worry. Down Syndrome was never mentioned

snowpuma · 19/09/2014 22:52

I found all the sonographers quite clinical and their interpersonal skills sometimes lacking. They were quite "academic" in that they are looking for things to diagnose etc but no good at delivering news or thinking of how the info they are giving is coming across. Luckily my DS ended up being fine but from what they said it could have been catastrophic... And then they just say "oh so come back in 4 weeks and we'll re scan" just casually. I do feel for you, I hope all works out well for you and you get plenty of support and information.

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