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 ?

OP, so sorry that you are having to defend your personal views and choices. These sorts of thread are really not the place for others to push their agenda.

I don't think anyone is asking for the op to defend her views. All I'm saying is that if she is worried about the slightly higher risk of ds, she should push for clarification as soon as possible rather than relying on a post 24 week termination which will be more complex and problematic.

I'm sorry op if I phrased it badly, but I don't think it's helpful for other posters to suggest post 24 week termination as an option. I agree with you op that this would be an even more difficult decision.

It's hard enough for the brave women who have late termination to spare their babies the pain of conditions incompatible with life.

Other posters, please don't call "agenda" just because someone is pointing out facts that are pertinent to the op's situation

Dd2 had dilated renal pelvis too. Just over the threshold in one kidney and just over in the other. I went for 2 more scans at 34 and 37 weeks and her kidneys kept switching over between just over and just over. 2 days of antibiotics before she had her own ultrasound and given the all clear. The sonographer I had told me that it was quite common and there was nothing I could do to change it. So we took the view of not stressing about it- no way would we be left for 14 weeks if it was that serious! She is fine now. Not a boy (more common in boys) and no downs.
I would stick with your original odds of having Downs.

Schmee, clearly you do have an agenda, that's evident in your use of "please don't".

What you're saying now smacks of backtracking. Of course the OP needs more information, that's the whole crux of her thread.

I don't want to derail this thread but I have reported your post AWombWithoutAFoof.

Hi there
Hope you got some sleep OP
Understandably there are lots of issues brought up by this thread and emotions are running high.
OP we do have an antenatal tests topic we can move this thread to which may be more helpful - let us know?

Additionally, can we remind everyone of our this is my child campaign and indeed Mumsnet's raison d'être which is to make parents' lives easier?
Thanks
MNHQ

I had soft markers a low ratio score and had an amnio with my last preg
I was very unsure but had two other children aged 2 and 1 at the time and so I wanted to know what was going on

The amnio test was negative

It was a difficult time for us. I hope that you get enough support throught the process of testing and afterward make the decisions that you want for your family
I get a little cross when I read posts where people aren't supportive in this situation. It really is awful

I'm coming off this thread, but anyone interested in the issue may consider reading this from The Guardian. I don't think it's making people's lives easier to kid ourselves about how difficult post 24 week abortion is.

OP - I hope you get the answers you need and that whatever decision you make (if necessary) is made as easy for you as possible.

I think your chance of Downs is still 1in1900.

Having one soft marker is quite common. National guidelines say unless there's two soft markers then further screening isn't offered as routine.

Remember as well as the soft markers there's other stuff which would normally be picked up on scan if baby had Downs. Nasal bone absence, sandal toe gap, cardiac defects.

The fact you've had none of these, no other soft marker and a 1:1900 chance via nuchal fold and bloods is really good.

I had a soft marker at scan with dd, she had a cyst on her brain. I was told that 99.9% of them go and aren't a concern. I didnt even get a later scan.

But yes, talk to your midwife or consultant if still worried.

I don't think anyone is saying an abortion at this stage would be easy ffs. But the op was concerned by the 24wk limit and some of us wanted to let her know that if her baby was found to have ds (VERY Unlikely) that she would be able to IF she wanted to.

Of course it would be difficult, but the op needs information.

Fgs I know this is in aibu, but it is bloody obvious that she is upset and scared ans worrying. Some of us are trying to reassure her, chances are all will be fine. But if it's not the op has said herself she may want to terminate and she was worried about the 24wks limit so we answered her concerns.

Asking the op to please not consider termination, bringing up prem baby survival rates etc is not helpful.

We all hope the op gets some good support from her midwife and Drs and fingers crossed all is fine and odds are all is ok.

I hope you got some sleep op and that you get the answers you need asap. I will be thinking of you xxx

If they thought there was a high risk of downs they would have brought it to your attention there and then. 2 out of my 3 children were flagged up at 12 weeks and then rescanned at 20 weeks where an experienced sonographer would have picked up other markers (nose, heart, leg bones etc) and immediately sent you for testing due to you being 20 weeks.

I think you have probably scared yourself a little here by googling which we all do but sometimes it can put the fear of God into us and is not entirely helpful.

Schmee I've not seen a single poster on this thread tell the op that an abortion at this stage would be easy . I've seen lots of helpful posts about the options she would have if her baby has downs. Which, like it or not, does include termination.

Preaching at her about how awful late terminations are and linking to an emotive article about them where the lady is at a similar stage to her are not helpful.

She is 20 weeks pregnant. Her baby has an abnormality just picked up which may or may not be significant. She has posted for reassurance and advice on what to do next. It is not an appropriate place to have a debate on the ethics of termination.

Hi all, just to say I've really appreciated all the posts on the thread and I've especially found those from mums whose DC have had this very reassuring.

olivia I'm happy to leave this in AIBU - my question was really an AIBU about the practice at my hospital and I wanted high traffic and straight answers. Which I've had :)

viva thank you. I don't know if it's etiquette for me to ask this when you haven't said, but am I right in thinking you're a MW? Or am I confusing you with someone else?

I think what bugged me about the experience was not so much the result but how it was communicated. I wasn't sure the sonographer was fully up to speed on what he was doing as I didn't find his manner that professional or reassuring. If I had, I think I'd find it easier to assume he didn't elaborate as it was fairly normal. But he didn't say anything like "oh yes, we find this quite a lot, it often resolves itself before birth but there are treatment options if it doesn't, and it doesn't really up your risks of downs". But he didn't, he just said "your baby has a possible abnormality, so I'm referring you for a further scan".

Just in general, he seems quite vague. He said at one point he couldn't find one of the baby's arms and then said doubtfully "it's probably just how it's lying" (he did find it eventually).

He asked did we want to know the baby's sex, and we said yes if poss, and he peered and said "let's measure Junior up for a skirt or trousers eh, I'd say boy, hmm, no maybe not, no testes visible but I can't see the three lines for a girl, hmm boy girl boy girl, not sure, I'd say boy but the testes haven't descended properly, bit unusual".

Generally he kept up this monologue and seemed a bit bumbly so when I got home and found out there was even a slight chance of something serious related to his findings, I wasn't sure I could trust him to have explained that properly. I think that freaked me out really.

Thanks for helping me get it in perspective and I'll be right on to the hospital on Monday.

Apologies if this is out of order but would you consider reading the downsideup blog, OP? just to check you don't have any misconceptions about DS.
www.downssideup.com

DC2 showed the same, and again at 32w and 36w IIRC. He was scanned again before we were discharged from hospital, and had daily prophylactic antibiotics until we were signed off by paeds at about 5mo Nothing wrong with him at all. Well, he just drew with biro on the dining table but ykwim.

YANBU to think you should have been given more information before leaving as Dr Google is notoriously pessimistic.

We were held for ages at 20w while they found someone to explain at great length that most babies grow into their renal pelves before birth, blah blah, of those that don't most have grown into them by 6mo or something, etc. They had statistics which I now don't recall but it was something like only 1% would need any intervention at all. It was very reassuring to get that perspective.

Oh and it's far more common in boys than girls so that supports the vague sex prediction...

I hope you are doing OK at the moment OP.

That sonographer sounds like a bit impersonal and as if he was trying to rush you out of the room and get onto his next patient, if that makes sense.

I really think you should push for some form of investigation or at very least, another scan in a week or two's time where things might be a little bit clearer.

I'm sorry you're dealing with the possibility of having a child with a health condition like yours. Both myself and my partner are visually impaired and had genetic counselling to see if any children we have would be likely to have a sight problem but alas if they do, it's nothing to do with us and just due to bad luck. But like you it would be bearable because you'd know what kind of things to look out for, in what ways to help and what things wont help.

I can honestly say I don't know what I'd do with the prospect of having a child with DS. I love some children dearly with DS but I'd also feel torn because it's a big responsibility and we have a DD already and I wouldn't want her to feel pushed out or given less attention.

I like to think if I ever got to that position the answer would just spring up at me, but I doubt it to be honest.

I really feel for you and your partner. I hope it's something that rectifies itself or at very least something a small surgery can improve/fix. My partners brothers little girl at around 9 months had her tummy cut open due to not being able to eat properly (irresponsible and not the right thing to do, but that's a different story) and you wouldn't notice at all unless you were deliberately looking out the scar. They can also fade pretty good as the body grows older, unlike CS scars of us Mum's whose body is going to stay at the same height and roughly the same weight.

Thinking of you at this difficult time. I hope you feel comfortable to come back and discuss anything you need with us as most of us really want you to be happy, safe and well.

Good luck OP

OP, so sorry you're going through this. It's infuriating when you're having scans and other testing, but results/implications aren't communicated to you properly.

I remember thinking, at one point, why bloody bother getting all this done, if the professionals aren't going to properly collate and consider results and explain the options. But you just have to push on and be your own advocate.

I second what other posters have said about Harmony testing, btw. Do look into it if it's an option. I think the results take ten days?

Ultimately the issue for OP is the lack of communication from the hospital or MWs. An anomaly was picked up, so someone should have been onto this straight away to explain what it might mean, so the OP had proper information.

She shouldn't be in a position where she's having to call hospitals, MWs up to find someone to talk to about this.

It's so stupid that 20 years after my cousin had a crap experience with her hospital's lack of communication that it's still happening to others.

Peasant, I am a midwife. However its many years since I worked in antenatal clinic and being involved in this sort of stuff so take anything I say with a pinch of salt rather than been professionally accurate.

I know for a fact we wouldn't as routine offer further testing for one soft marker though. That's still the same. I think my hospital is good at following research based guidelines so there must be evidence for that.

I do know that over the years I've delivered a lot of babies that have had dilated renal pelvis on scan and not a single one has had Downs. Having it seen on scan isn't that unusual.

Your hospital does sound a bit crap on advice though. Where iWork everyone sees a midwife after the 20 week scan so anything like this can be explained. When I did work in clinic I'd tend to get a Paed to come and see anyone who was still anxious and they'd come and draw nice diagrams, etc and reassure more.

I know a lot of hospitals now women just have the scan and that's it. No midwife straight after.

I haven't read the whole thread just the OP but my DD had this at 20 weeks. My sonographer was awful too, I left in tears because she was so cold and unbothered.
At 34 weeks the RPD was no better so they arranged scans after the birth, one kidney completely disappeared and she now has hydronephrosis of the other one. She takes prophylactic antibiotics every day but it hasn't affected her. She's 3.3 and we see doctors at our local hospital and the children's hospital but they are happy with her scans so I don't worry. Like you, they told me she will be under consultant care if she ever has a child :)

In 2013 at my 20 week scan they told me my son had RPD. It is NOT genetic OP. Its the simple case of cells not forming properly at conception. My partner and I and my son had kareotypes done and it is NOT genetic. It's merely a coincidence that you also have kidney issues. Also my sons nuchel fold suggested he had down syndromes HE DIDN'T.

It's very bizarre that you havnt been referred to a consultant. Make some calls and get yourself seen asap. I was referred to Liverpool to see a specialist and I had numerous scans with consultants. Most woman have had positive outcomes from this and I hope and wish you do to.

My sons RPD was too severe where both of his kidneys had failed and he was dying inside me. I had to make the heartbreaking decision to have a medical termination. I really didn't want to and it's something I think and cry about nearly every day. I had him at 24 weeks and he was perfect. You wouldn't think to look at him he was so poorly. He lived for 2 hours and I'm very grateful for those two hours.

It's took me over a year to come to terms with what happened. It wasn't my fault and there was nothing I could do to prevent it. And it wasn't genetic.

Does it say on your records if both kidneys are effected? Or just one? If its just one I think you & baby will be fine. People can live with one kidney. In so so sorry you got that news and I truly understand how upsetting it is. I hope your ok as you can be.

Because the scanner didn't seem too urgent about a next scan that suggests that everything will be ok. I was instantly referred to a consultant and then to Liverpool within 2 days. So for you to be told to come back in 6 weeks to me suggests that it isn't too severe. Not saying it int a big deal I mean to say I think everything will be fine. But please do get in touch with your midwife and get a scan with a consultant.

I know I've already said it but it is NOT genetic. And the nuchal fold is a bit hmmm aswell because they said my son had Down syndrome and he did not. All of our kareotypes came back normal. Apart from his kidneys he was a normal boy.

I'm so sorry you've had a horrible day and I hope your midwife helps you out xxx

Thanks Life and I'm so very sorry for your loss. That is absolutely awful.

It's good to know it's not genetic, too. I am going to push to see someone about this next week. As I am under cons care for my own kidney issues I am hoping I can speak to him about this - although I agree it is crap that no one explained, as the sonographer didn't know I was under cons care when he made the referral for the scan.

The results were left kidney 6.5mm and right, 8.0mm. They said their cutoff is 7 so I'm guessing they are both a bit off but the R one definitely abnormal.

Thank you again for posting.