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 ?

It was, he was our first and we'd been trying for two years for a baby. He was very very wanted. But he died in my arms knowing he was loved. It was the kindest thing we could do, if I'd of gone full term he would of died as soon as he was born and been in agony. But even that doesn't make it any easier. But it had to be done.

It's Definetly not genetic I promise. Yes do push to see someone, it's good to know what to expect and it will give you peace of mind.

I'm not a doctor but 7mm is the cut off as they say, so one of your babies kidneys is just under and one is just over. My sons were 10mm and 13mm. The 13mm had died as such and after a few scans the 10mm did too. So in my opinion your babies kidneys arnt too far off the "normal" measurements which might be why the scanner wasn't overly concerned.

With my son it got worse within days, we just wernt exoecting it. We were told at 20 week scan that its not normally a big deal babies survive this and they normally need antibiotics. But then at the consultant scan we were told how bad it was. I was only 21 myself. I really wanted him.

I really really hope that everything works out well for you and your baby. But you might have to prepare yourself for the worst. I really hope it doesn't come to that for you both.

But just going off my own experience 6.5 is deemed "normal" and 8mm isn't too far off "normal" so hopefully you'll both be ok. Plus a big positive going for you both is that the scanner wasn't overly concerned. It's apparently more commen in boys than it is girls. But apparently more severe if its a girl.

So things are looking ok for you both. I really hope so xxx

Try not to worry too much as stress is not good for you and baby. Monday isn't far off now, you shouldn't have to make phonecalls ect but by looks your going to have to. But from measurements kidneys arnt too far off "normal" range so that's a really big positie. And again they told me my son had Down syndrome, he Definetly 100% did not. Thinking about you both and hope your feeling a little bit better xxx

Life how generous of you to share the story of your perfect son.

Sorry for your loss. I'm so glad you had those two hours.

You should routinely have an appt with your midwife at around 22 weeks so do make one if you don't have one. Please try not to worry altho I know this is difficult. You are right, this often spontaneously resolves.

How've you got on Revolting? hope your ok xxx

Dd2 had a missing hand found at the 20 week scan. Things moved much quicker than you've had-we were back in for a scan the next day and we saw the consultants at the limbcentre within a week. And a missing hand usually is just that, nothing more, so there was no urgency for it. So I'd guess from your experience that they don't think there's anything much wrong.

It is very scary, personally I felt like I was mourning the baby I thought I'd known; it was not really until the birth that I felt able to connect with the baby inside me-although I'd felt really bonded before I'd known.

One thing I do want to check though. We had exactly the same with dd2's arm as you describe. They said "probably just the way they are lying" and tried to make dd2 move until they had a clear view of her arm, and then it was clear that it was missing from below the elbow. He did see the whole arm didn't he? Preferably and fingers? They can see fingers on the scan if they want to.

The kidney thing is quite common I think though. I know several (all boys) who had similar to you and it had cleared up by the 33 week scan, so hopefully you will be able to relax after that. One of my friends at school had one kidney and she was absolutely fine.

Thinking of you revolting hope you have been in touch with the midwife and got further info and reassurance.

Hi all I just wanted to update this thread, as so many people were so kind and gave me so much support.

I saw the consultant this week who said the sonographer was "talking nonsense" and my baby does not have hydronephrosis. That was actually the word the sonographer used, but the consultant said it was wrong, and hydronephrosis refers to a more serious problem. He said the degree of dilation which the baby does have is likely to be clinically insignificant.

He also used to work at the hospital which put out the leaflet about the increased risk of Downs and he is familiar with the study which gave rise to that claim. He said he disagreed with it, and so does the national screening body, as they had considered changing the guidelines a few years back based on it but decided the study hadn't demonstated a strong enough link. He said there was no reason to re calibrate my risk of DS.

He also said that particular sonographer was pt, and I was unlikely to see him again when I go for the further scan, but if he called me, I was free to say I didn't want to see him, and that wouldn't be rude.

I had the impression that the cons might have been going to have a "quiet word" with the sonographer which I hope does happen, as I don't want to make a complaint, but I'd like that guy to think a bit more about how he presents information. I also feel like the fact that he said the baby had hydronephrosis when it doesn't is an objectively good reason not to see him, so I don't feel guilty.

Thanks again to everyone who posted, it really helped so much when I was feeling very upset

Oh hooray for a good consultant!

So glad all is well :)

Hope you are more relaxed now and enjoying your pregnancy :)

Oh good! Glad your baby is alright! :)

What an idiot sonographer though! You don't just flippantly remark how a baby has a serious medical problem then saunter on your way like that, leaving the mother in the dark. Hopefully he gets a foot up his ass, for one not being able to read the scan correctly, and two causing unnecessary stress.

The good news for you is you get to sit back and relax the rest of your pregnancy. :)

Thanks :) I was feeling recently like maybe I was over reacting to the potential DS link, but the hydronephrosis thing is definitely something he said, and it definitely isn't true. That makes me feel less like a hysterical ftm and more like a misinformed patient!

I think you might have been a tad harsh on the sonographer, personally.

They get a short amount of time to do the scan. If it is just routine, they don't tend do do more than have a quick glance at the notes - most get 20 minutes per scan.

The picked up a small problem and answered your questions there and then about it off the top of their head. They explained about the RPD - you brought up the hydronephosis. It might have thrown them.

It isn't their job to explain everything to you. They are not doctors. They can't know everything, and as they are explaining about something as they have just seen it, they can't have a quick read up on the topic and refresh their memory like a Dr or midwife would be able to seeing you after the scan or at a later stage. They expect the DR/midwife to go through the scan with you after. That is what is supposed to happen.

OK their manner may have not been great, can't really know unless I was there.

Sonographers get it in the neck a lot. It is a thankless job.

If it's not their job to explain then they shouldn't try to explain.

Sorry you had so much worry OP. Glad all is well.

Allegorical no sorry he said hydronephrosis and then I said oh, I've got that.

Anywho, never mind, I haven't said anything to him and hopefully won't see him again.

Oh RP I'm so relieved for you. Hoping the rest of your pregnancy continues peacefully and in as stress-free a manner as possible.

It isn't quite as black and white as that spring baby.
Ultrasound is a very dynamic process. Specialist consultants don't even make a diagnosis straight off the bat. The sonographer has a duty to let the patient know they have noticed something "out of the norm" and explain to the best of their knowledge what they think it might be at that time. It isn't the final diagnosis. The sonographer will write a report once the patient has left the room and they will have a chance to think things through, go over images, measurements etc discuss things with a collegue etcetera. Possibly refer to a consultant for further imaging. The dr/ midwife then has a duty to explain the sonographers report to the patient after the scan.
It's hard when you are scanning and formulating things in your head sometimes and you have patients asking you questions at the same time. And yes they may get it wrong initially but it isn't the final diagnosis. More people would be annoyed if they didn't say anything at all I think.
Like I said sonographers can't do right for doing wrong.
Really the midwife should have explained things properly to the op at the end of the scan once they got the report.
Not saying the sonogrApher didn't mess up a bit. But at the end of the day they are the one that found a problem and it is getting looked into. I would rather that than it got missed.

Absolutely, and I have been in this situation. My sonographer did not make mention of what she found, I was simply asked to wait afterwards and was taken into a side room for a chat with the midwife. Most worrying time of my life, and thankfully all turned out fine after a re scan with a consultant present the following week. I am glad the sonographer didn't muddy the waters by speculating. I guess not everyone works exactly the same way though.

Pyeostatis? DS had that, though I didn't have that name for it until he was a few yrs old. He's now 14yo & failing to get up this morning as promised (argh).

I understand the upset OP felt (especially the tears) but I don't agree they handled anything wrong or should have delved into the uncertainties about soft markers. It takes an expert to know about when it matters, sonographers can't be that kind of expert. Glad you got a consultant who could reassure you, at least. Mine was fab, too. I was completely bored with the extra scans by the time I got to 36 weeks, though.

Haven't read whole thread sorry.

They found something amiss with DS2's kidneys at the 20 week scan. I had lots of scans and was warned of a risk of DS too.

He had a lot of tests early on and an op at 6m but touch wood he's never even had a kidney infection. We stopped the antibiotics at about 4w as they made him sick (he had awful reflux).

At 8y he has bilateral duplex kidneys and reduced kidney function but no outward signs of any problems.

Good luck for your little one :)

I am also going to stick up for the sonographer. Any renal pelvis dilatation over 7mm is classed as hydronephrosis. There are several different degrees of it, but it is still fluid with the renal pelvis.
Sonographers should not be reading the mothers hospital notes so he wouldn't have been aware unless it was documented on to the obstetric referral section. Many people would be in uproar if we were reading through the entire notes.

I'm glad people have mentioned that soft markers are invalid. They've not been reported on for at least 6 years as there is no link between them and DS.

You have mentioned if you know the sex of your baby. The consultant should have told you that it is far far more common in one sex compared to the other.

Also the reason the poster with a daughter with cleft lip was seen by midwives afterwards is because she would have needed referral to teams such as CLAP as a fair bit of counselling would be requires prior to labour and in prep for babies birth.

Sometimes we don't have the answers to everything. But that's not our job. We find the abnormalities and referr on if needed. Patients will fire all sorts of questions at us that we will not always answer in the depth the patient wants. You had another scan booked which is adequate. And if the fluid is gone then fab, if not you may get another scan and baby will be scanned when he is out.
Google should be banned in moh!

Just to answer a few Qs, it's on my maternity notes which he had in the room with him before we went in. He didn't wait to write,his report, he did it in front of us and printed it out and handed it to us. He didn't refer us to a MW or dr. He just said to come back at 33w.

Anyhow, it's good to get different opinions. And the main thing is we now know what is going on.

Poppies I'm interested about the hydronephrosis thing, as the cons very definitely said that RPD didn't "count" as hydronephrosis unless the dilation was more severe than our baby's. He was quite firm about that. ???