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 ?

Milk you are probably right - I am no mathematician and pretty innumerate that makes me feel better.

Mad thanks for sharing your experienves, though they make mine pale! What an awful dr.

Doris yes I also have bilateral disease like your dd and have had multiple surgeries for it. Hence being a bit paranoid / guilty that I have passed this on to my baby! My last kidney surgery was rough and I can't imagine a baby going thru it, though I know they do.

And Mad yes that is what I mean. I know this will offend many people and it isn't at all my intention, but DH and I decided when we first ttc that if a scan turned up DS we would make that decision. I have no idea if I could go through with it now, but experiences I've had have led me to feel that's what I'd do. I didn't know about the 24 w versus term thing, it is useful to have the facts but almost makes it worse somehow. Argh!

The only way of you knowing for sure re a specific condition prenatally is diagnostic prenatal testing ie cvs, amnio, harmony etc. if you don't do one of those there is always a risk however tiny your baby could have condition x or other condition. So it depends how far you and h discussed going in prenatal testing. Are you happy for risks of amnio in order to know for sure ?

Otoh the chances now are really quite small. Talk to genetics and consultant about it. What if baby was born with kidney or other health issue ?

Cestlavie, if with kidney issues I'd be upset but deal. I know a reasonable amount about those, having them myself. I have strong personal feelings about DS due to a situation when I was a child. Don't want say more about that as don't want to get into that debate.

I know you are logically right and I need to push for some info now.

'Soft marker' means vague unproven possible link.

One of my DC had 2 soft markers.

'twas bollocks. Just caused a week of heartache til the amnio came back clear.

Soft markers are not definitive and most of the time these markers resolve themselves. My baby had Downs. I chose an amnio after 3 soft markers appeared on my 20 week scan. The ultrasound technician referred me to a consultant who performed another scan and offered me amnio. Ask to see a consultant.

Well I always think it's best to be informed. At the moment the chances are you are worrying over nothing. They didn't pick up any other soft markers or heart issues etc common in babies with ds. So that is all good :)

Call midwife asap, do you gave a specialist you see? If so maybe try ringing them? They may be able to give you info re possibility of baby having the same thing. Even if they do it doesn't necessarily mean operations etc. It may resolve itself or be treated by antibiotics. With ds1 they talked about putting stents? In his kidneys? But he didn't need them. And as horrid as it would be if baby needed an operation they wouldn't remember and they are surprisingly sturdy little things and bounce back quickly, far quicker than adults do, they heal much quicker.

Do you know if bump is a boy or a girl? If not and you want a surprise make sure you say that at the next scan And they can make sure you don't see!

Now it's late, try and sleep, I shall cone back to this thread and check for an update.

Dora you are right, and I really hope my feelings about having a baby with DS haven't upset you. Thanks for posting.

Mad yes I see a fetal maternal medicine specialist - ironically because of my own kidneys!

And yes I have had stenting too. Not so much fun! But I could deal with it if I had to.

No he also couldn't see if it was a boy or girl and said he thought it was a boy but with undescended testes which he implied was abnormal but didn't really make anything clear.

And I will def take your last piece of advice and sleep now!! :)

Do try not to worry OP. And really try to stop thinking of DS and what you would do. You only need to think about that if you are given a proper dg. But you haven't been, just that the odds have very slightly gone up from tiny tiny to slightly less tiny odds ifyswim. So put that worry at least out of your mind.

Wrt to the RPD, you have every reason to hope for the best at this stage. Most cases resolve themselves. Even with your familial link it is unlikely to need surgery. The vast majority of cases resolve. And as Mad says, babies heal much faster, if your lo does. Ringing your consultant's secr on mon am is a good idea to get your appt brought forward and in the meantime contact your mw.

Well undescended testicles at 20 wks scan is normal! Babies can be born with that esp prem babies.

I was told that this kidney issue is more common in boys. So maybe it is a boy. Boys are fab, I should know I have four!

Do try not to worry OP. And really try to stop thinking of DS and what you would do. You only need to think about that if you are given a proper dg. But you haven't been, just that the odds have very slightly gone up from tiny tiny to slightly less tiny odds ifyswim. So put that worry at least out of your mind.

Wrt to the RPD, you have every reason to hope for the best at this stage. Most cases resolve themselves. Even with your familial link it is unlikely to need surgery. The vast majority of cases resolve. And as Mad says, babies heal much faster, if your lo does. Ringing your consultant's secr on mon am is a good idea to get your appt brought forward and in the meantime contact your mw.

Totally normal response, I can see why you're worried though I had exactly the same thing and felt v worried too. Amazing when I started chatting to friends how many had also had it (I would say 1 in 5 probably!)

The downs thing is a bit of a red herring esp if you've had a good result on the nuchal, as someone else said there would be other indicators by 20 weeks.

While your kidney issues may be relevant I highly doubt they would affect the treatment of your baby. It is such a common thing to pick up on a scan and everyone I know who had it had the same treatment as you (re scan at 33 weeks) as there is nothing more to do at this stage of the pregnancy. Your best route would be to ring your consultants secretary on Monday and arrange a call with the consultant. However I highly doubt they would recommend an amino, given how common this is and the fact there are no other downs indicators.

The actual condition will be reassessed later as to whether there will be any need for treatment after birth. I agree it would be helpful if they explained more at the time but the nhs is not perfect! The reason they are so blase is because it is a v low risk of serious issue. Like a pp said if something serious comes up like a cleft palate they are all over you immediately as this does impact the baby very significantly after birth in terms of feeding etc, will Def require quite serious surgery.. And so on. Although it feels worrying, the fact they aren't doing anything is good news

Firstly, I'm sure your baby will be fine. You say that you are worried that you have passed this condition to your baby, or that your baby has Downs. Don't you think that given your condition it is most likely that your baby has the same thing as you, rather than Downs being the cause.

I know you are panicked by this, but even if there were a 1 in 200 chance of Downs, that is pretty low.

Until you can find further information, don't disassociate yourself from your child based on the remote possibility that they may have Downs.

But also, please don't consider the possibility of a late (post 24 weeks) termination just for Downs Syndrome, whatever your personal experience of the condition. Did you know that one in five babies born after 23 survive?

I don't judge at all..(I have a dc with chromosome micro deletion severe lds could not have then been detected in utero. Had anomalies detected but they were deemed corrected... At that time. Any prenatal testing wld have said not ds. ) Your reasons for u and dh no one else.

But do bear in mind. That that there are other conditions too . You can't rule out a child with any kind of global learning issue autism etc by ruling out ds. It is just one of the conditions easily tested for. You could for example insist on a full scale detailed chromosome analysis to rule out any kind of known chromosome problem that comes up on a more detailed level of chromosome analysis tho I am not sure they available prenatally yet for all. 22q deletion syndrome ( also linked to kidney issues ) is almost as common as ds for example. Can have learning issues like ds. You cld ask for testing for that too.

Tho you said if detected "on scan " so maybe you on some level thought if ds and it easily detected on a scan ie very obvious you would take certain decision. You would take chances on anything else.

You could ask for more detailed 4d scan check facial features etc. then decide on amnio or not.

Antenatal testing is a minefield as soon as any small thing is found... But chances are good it is only one small thing. Talk to your consultant ask for more detailed scan in next few weeks for reassurance.

Please dont worry. PC dilatation isnt uncommon on anomaly scan. How many mm was it?

It is a soft marker for downs but if your downs screening came back as low risk and there are no further markers - you still would be considered low risk and not routinely offered an amnio.

Most PCD's resolve themselves and by the 32 week scan they are gone. If they persist - another follow up scan is done postnatally. If the dilation is above a certain diameter at 32 weeks then antibiotics is prescribed as babies are more prone to urine infections until everything settles down.

You have a history of renal problems so this is understandably worrying for you. They would have told you if there were any issues with the baby's kidneys and obviously this be rechecked at the next scan.

The radiographer obviously sees a lot of PCD's so wasn't unduly concerned but his manner sounds appalling and unprofessional.

I would ring the antenatal clinic and ask for next available appointment to discuss. I think you would gain a lot of reassurance if you just had someone explain things properly to you xxx

My friends dd was diagnosed at birth, diagnosed anti b's which my friend said she forgot now and then! Now 13 , in perfect health. Hope it's fine for you x

Look I know some of this discussion is sensitive re termination etc but schmee don't tell the op whether she can or can't consider a termination. And the survival rates for prem babies is irrelevant to discussion on termination anyway. But ultimately the decision will be the ops to make and comments like yours aren't necessary!

The chances are its all irrelevant anyway as the ops baby most likely does not have ds, though obviously no scans etc can rule everything out.

I didn't tell her she couldn't - I said "please don't". I know it's controversial but I don't think it was helpful of you to tell her that she can get a termination after 24 weeks for Downs.

Only a tiny proportion of the tiny number of post-24 week terminations are performed for Downs. Although the wording allows for Downs to be included, many doctors feel that this should be tightened up and post-24 week terminations only allowed for conditions that would cause very early death.

Why do you say that the survival rates aren't relevant?

Look I am not going to get a discussion into termination on this thread, it's not the place.

But I wasn't the only poster who told the op she could get a termination after 24wks for downs. She could if she wanted to and that is her choice. Suffice to say I am totally pro choice. And a woman's right to bodily autonomy is fundamental.

Schmee your posts are unacceptable. Totally.

Why is that unacceptable?

Interesting cestlavie I also ha ve a child with a chromosome micro deletion 16p he also had kidney problems at birth he had kidney reflux and was on antibiotics for about three years as a preventative his micro deletion as picked up about six months ago after he was diagnosed with ASD .

I agree with cestlavie, antenatal screening is a minefield - we had detailed screening due to a familial history of a condition incompatible with life, however ds has a genetic condition which has yet to show up properly in any postnatal tests let alone antenatal! It is a condition which also has kidney abnormalities (I have a friend whose sone has a different genetic condition with a kidney abnormality as well, so it is often a common feature of many other conditions)

I have friends and know children of friends with Downs Syndrome, and they are as individual in terms of personality, health and function as everyone else.

As for termination, I also have experience of very late near to term terminations (see above) and it is a hard and painful decision to make, and a traumatic experience to go through, and would never judge someone who had had to make that decision.

I hope you can get some advice from medical professionals ASAP, to put your mind at rest, and I wish you tons of luck in the coming weeks.

So sorry you are going through this OP.

I'm sorry if I missed someone else saying this upthread, but the Harmony test carries no risks and is pretty much a yes or no on Downs. It's not cheap (400 quid for us but you can probably get it cheaper). At least then you know what you're looking at. Not an expert but I'm sure you can have it at any time. You can also (depending on where you live - we're London so makes it easier) get an appt v fast. I booked on the Mon for the next day.

Hi OP, I don't think your risk of Down's will be anything like 1:200, hopefully your midwife/obstetrician will be able to advise. However, I suspect that due to your reassuring screening results earlier, and the fact that you have the same anomaly as your baby, that you will still be considered extremely low risk for Down's.