Severe antenatal hydronephrosis / renal pelvic dilatation

[Katrili]

Hi all,

Our baby boy was diagnosed with a mild/moderate bilateral renal pelvic dilatation at the 20-week scan (8mm on the right, 10mm left) which has now at 27 weeks massively increased to 26mm on the right and 20mm on the left. The consultant we saw for the scan told us this is really severe and serious, and made us question whether this pregnancy can even continue. All else on the scan seems normal. We’ve been referred to see a paediatric urologist urgently.

Now we’re obviously extremely worried and distressed. Has anyone experienced this level of severity? Just wondering what to expect. Any experiences would be helpful to hear about!

Hi OP, I'm so sorry you're experiencing this.
I have no experience with your specific situation, but didn't want to read and run.
I do have experience of recieving bad news in pregnancy (we discovered our baby was completely brain damaged at 27 weeks), so I can empathise with what you're going through.
If you haven't already, I would hugely recommend contacting Arc (Antenatal results and choices). They are fantastic. They will talk you through your diagnosis and what that could mean for baby and yourselves and also talk through your options whether to continue the pregnancy (though there's no suggestions either way). We found them incredibly useful, actually moreso than talking to the hospital.
Also, you could check if there is a Facebook group for this specific condition. We did this with our son's condition and read through hundreds of stories of what other children with the same condition were like.
Don't feel rushed into making any decisions. Hospitals make say 'you're running out of time', but remember you're only 27 weeks and you have a lot of information to absorb.
Sending you so much love 💕

Thanks so much for your response, and I’m so very sorry to hear about your experience! It’s somewhat comforting to hear I’m not the only one going through these struggles though, as I feel like I’m just surrounded by easy and happy pregnancies. We also had a really unlucky second trimester loss just last year due to an infection, and I feel like I can no longer take comfort in statistics…

I hadn’t hear of Arc, so definitely going to check them out and have just requested to join a couple of Facebook groups on hydronephrosis.

Thanks again! 💕

Oh my goodness, I'm so sorry for your loss.
Life feels so incredibly unfair. I completely empathise with the struggle of seeing happy and healthy pregnancies around you. I remember the main thought in my head every single day was 'why me?' I wouldn't wish it on anyone else, but why me?
I really hope you get some positive answers and reassurance xx

Hello OP,

How are you and your baby doing? I'm 28+3 today and told my babies right kidney is dilated and measuring at 20mm and the left slightly dilated at 7mm. I'm due to have another scan with the consultant in 4 weeks but wondering how things have progressed? xx

Hello! Great to hear from others who are going through this, but I’m sorry your baby’s having it too! I’m 30+3 now. After I posted the original message we were given an urgent appointment with a paediatric urologist, nephrologist and urology surgeon (who’ll be on our case for the rest of the pregnancy and straight after birth). We were checked again by a specialist who didn’t see any other defects (and therefore no reason to terminate) and talked us through what might be causing it and what will happen after birth (antibiotics, checks on renal function, finding out where the obstruction is etc. this is a great website which the docs recommended and explains it all: www.infokid.org.uk/conditions/antenatal-hydronephrosis/). We’ve just had another scan this week, and the dilation hasn’t decreased but hasn’t increased much either (23mm on the left, 26mm on the right). They’ll continue monitoring and will let the birth come about naturally unless the level of amniotic fluid starts dropping/obstruction gets worse.

Your situation sounds a lot better in that the other kidney is only mildly dilated, take it as a positive. Our issue is that it’s both severely which is a lot rarer condition, and also likely to be a lot more difficult to deal with. Our surgeon at Chelsea and Westminster hospital said she comes across this about once a year…

It’s quite stressful, but the range of outcomes seems to be wide. In lucky cases the dilation might just sort itself out after birth, but we could also be facing surgeries, multiple trips to hospital… so just trying to take it as it comes but finding it pretty hard not to worry the whole time.

Sending all the good vibes your way! Would love to hear how it all goes. x

@Katrili hello, thank you for posting with the website link.

how did everything turn out? My 20 week scan has come back with left side kidney problem

I hope things turned out okay for you and your little one xx

Hi there,

I’m sorry to hear you’ve had this discovery too, but I can assure you that having it one side is usually much less of an issue than both, so that’s a good starting point. Also mild/moderate findings seem to often go with time either during pregnancy or soon after birth, so I wouldn’t be too stressed out if that’s the case.

In our case the dilatation continued with figures increasing all the time, all the way to over 30mm on one side and 40mm on the other at week 37. Otherwise no problems were detected on the scan and there was plenty of amniotic fluid around the baby all along. The urologist thought that it would be a good idea to induce at 39 weeks to prevent any further tissue damage, so I had him just five days ago! We’ve had NICU look after him since he was born last week, so actually just here as we speak... The dilatation is still there, but the kidney function is normal, there’s been no cortical thinning (which was thought to have been the case based on the scans), he’s passing urine fine so basically aside from the dilated kidneys all looking ok so far. They think that he has dilated pelvi-ureteric junctions (PUJ) on both sides. There’s a chance that the obstruction settles, but if not, then surgery might be needed. We’re just waiting to have the MCUG test done tomorrow to see if there’s any urine reflux or PUV, and to have a better idea of where the obstruction is.

I hope this helps, you or whoever ends up reading it! I’ve found it really helpful to read about people’s experiences myself to get a sense of what to expect.

Congratulations @Katrili. Your update has really helped as I'm due to be induced next Tuesday at 39 weeks with my daughter. Her left kidney seems to have gone back to normal but at a scan last week they said her right kidney was measuring at 45mm and looked to have little to no tissue and wasn't functioning. It's always confusing as different consultants all give different explanations as to what the aftercare plan will be. Some say there will be paediatric doctors waiting to look at her, and others say she will be seen as an outpatient but they'll monitor her urinating and swallowing. How long did you stay in hospital after he was born?

Thanks @Pinkshamrock15! We were really fearing the worst given that the dilatation was getting bigger and bigger, so it’s been a big relief his kidney function is normal at the moment.

We were also told that there will be paediatric consultants and urologist at birth and that he would be taken to NICU for monitoring and checks (which is what happened), but they were never able to give indication of how long the stay might be, quite unhelpfully. Also we were only told the day before that he would be taken pretty much straight away, and I was barely given time to cuddle not to mention feed straight after he was born. We weren’t told either that he’d be there the whole time while we’d need to stay in the postnatal ward. It’s been a pretty intense experience, also not being able to lounge, cuddle and bond with the baby. We’ve been in the hospital for seven days now and five since his birth, and hear that if all goes well can be discharged on Wednesday/Thursday. I can’t wait to leave! I think we expected it to be just a couple of days, though of course understood that it’s impossible to know before he’s born. I think it’s worth you really clarifying what to expect in terms of best/worst scenarios.

I really hope all goes well next week! ✨✨✨

Sorry - was also meant to add that I ended up having a c-section with him and it could be that the not being able to cuddle aspect might have also been to do with that, but not sure… My daughter was a vaginal and straightforward birth which I’m comparing to!

@Katrili thanks for the update. As far as I know I'm expecting to go home with her if all seems okay or maybe I'm being naive 🤦‍♀️. What types of checks have they done? And is there a reason why your son was taken to NICU? When asked was she going to be taken away they said its unlikely unless there is something obviously wrong and I really hope that's not the case. It's awful not knowing what's going to happen 😩 I'm going to give them a call tomorrow to see what is planned after delivery. I really hope you're both home very soon 🤞

@Pinkshamrock15 basically they wanted to check the kidney function first and foremost and to make sure that he is able to pass urine, but it may be that they are less concerned about that in your case (maybe because there is one kidney that seems to work?). I understand that if things would’ve looked really bad, they would’ve had to insert nephrostomy tubes to drain them to get things going. So they’ve taken blood tests to check the kidney function, kept on monitoring fluids really closely (both what goes in and comes out - they’ve inserted a catheter on him although it keeps on leaking so it’s all really fiddly), done an ultrasound to check the dilation and then just a whole lot of other tests that don’t seem to be necessarily related to his condition, but maybe generally are done in NICU (blood pressure, temperature but also things like scanned his head?!). I think they also like to see the kidney function over a couple of days to see how things settle after birth. It’s worth checking if they intend to do that with your daughter.

It’s so nerve-racking, isn’t it. I wasn’t really able to enjoy the pregnancy. But I do hope things will be ok for you! It sounds like she has one normal kidney, and that’s all you need really. Also it’s amazing what can be done to fix these things. My friend who used to work for the NHS says he thinks renal medicine is quite simple - basically plumbing and drainage, and unblocking pipes etc. 😅

@Katrili thank you so much for responding and also your update.

sorry for the stressful time your going through but massive congratulations on the delivery of your baby!!

By the sounds of it, it’s a somewhat resolvable issue even if surgery is required so that’s very reassuring.

I wish you and baby all the best xxx

Hi I’m reading through your comments , my baby has been diagnosed with fluid on kidneys .7mm on both at 16 week scan, I’m awaiting my anomaly scan as it was a private scan this was picked up on, but I see on the letter she gave me it says appears to involve renal cortex.. I never payed much thought to it till now does that mean it is very bad ? I am just so so worried, I am so happy that things turned out good for you.. please reply would love to chat I am beside myself with worry

Really sorry to hear @Danny2020 ! Maybe try not to worry too much though - sounds like it’s still early days and the dilatation might just go on its own. Xx

I booked a private scan tomorrow while waiting for my anomaly next week because I can't wait any longer I'm afraid incase it got worse I really am thinking worse case scenario..did they worry about the renal cortex being involved with yours? It said on my private report appears to involve the renal cortex so I don't know for sure praying my baby girl will be okay 😞

Thought I would hop on this thread too...

Currently 23 weeks and was informed of bilateral dilated prevail pelvis or potential kidney cysts a week ago.
One kidney was measuring 6.15 mm but I don't know if these measurements are correct because I haven't received the results of the more detailed radiology scan. I was told at this scam that both kidneys are retaining it ke and not filtering all of down.

I have been referred to a feto- maternal specialist on Monday. I am trying not to worry too much, but is so hard.

@Katrili I hope with the weeks passing that things are better and you are hopefully now home with your baby.

@Pinkshamrock15 I hope things improved after the baby arrived.

@Danny2020 how did the scan go? Hopefully you got more positive news...

@Tangledbaby wishing you and baby all the best, how is it going?

@alreadythere I went for my private scan at 19 weeks and the kidneys are 11mm but she said there is a cyst in the bladder that's causing the obstruction so that's the reason the kidneys are dialated, she said everything is working the kidneys and the bladder but the kidneys can't drain properly because of the cyst in the bladder and that's a clear cause of it , there's loads of fluid around the baby she didn't seem worried but I have my anomaly scan Wednesday I will probably be sent to the specialist like yourself it's still early days but to me she didn't seem worried and everything else did look okay, it's scary though I hope everything with you goes okay at least yours are only mild x

@Danny2020 thank you. Saw the fetal maternal specialist today and she is of the view that it is mild hydronephrosis, that there are no cysts and there is a dilation that is blocking the urine from passing completely. Another specialist came in to have a second look and both agreed the dilation (6.5mm and 5.7mm) are pretty mild and nothing to worry about- but that my Gynae needs to keep a look out for my amniotic fluid. They said if it continues being at the right level, then the need to worry is reduced because it signifies that at least one of the kidneys is functioning well.
I will go in for another review at 28 weeks for them to check if there is any progression- but they say it usually clears itself or requires minor surgery at birth.

I hope you receive some reassuring news too xx

@AlreadyThere that's great news I'm delighted for you ❤️ I'm back in tomorrow so we will go from there, im very nervous i to had normal amount of fluid so it means kidneys is working but they are alot bigger than your babies, twice the size so it is abit worrying but they also weren't showing any cysts as of last week anyway, just a cyst on the bladder which is causing the problem! I don't know if there is anything they can do before baby is born, or if they will induce early, but I'm hoping everything will be okay with her 💖 defiantly be my last pregnancy, Im not able for the worry I'm 20 weeks not so the worry starts for preeclampsia, I had it with my son it's never ending! but delighted you got reassuring news, keep me posted🤍

Update

Went for check up yesterday and the dilation on both kidneys has moved from 6.5 and 5.7 to over 10mm each, which I think is a big jump in a space of 2 weeks.

I am being told not to worry as amniotic fluid is sufficient, showing normal renal function- but I think over 10mm during 2nd trimester (25 weeks ) is classified as severe...it's hard not to worry.

Ladies any updates, how are things going? I am hoping for positive news all around.

Hi, I am just jumping on here as we have had similar news. I’m nearly 28weeks and we’ve had a couple of scans with fetal medicine since 20weeks. The right kidney is now 15mm and left 7mm which is classed as moderate and mild. We have been booked in for another scan in 3 weeks but there no mention of what will happen after the birth just yet. They do keep mentioning links to chromosome disorders such as downs. We have had nipt test which came back low risk but it is worrying when it keeps being brought up and if we would like an aminocentesis. We don’t have any other markers for genetic disorders. I wondered if this was brought up with anyone else?

@AlreadyThere how did this progress for you?

I was so worried about an abnormality downs ect from reading up on dilated kidneys , but it was never mentioned to me in any of my fetal medicine scans because everything else was fine , was never offered further testing or anything so to be honest I just forgot about it ! I have another scan at 30 weeks I've already had two!

@Danny2020 Oh that’s promising if they didn’t mention, they must not be worried about it! Could I ask what the kidneys are measuring at? Do you know what gender the baby is? We don’t know what we’re having but I know it’s more prevalent in boys