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!

Yeah I was surprised I was preparing myself to go in and be told about amnio and that it was a soft marker for downs just from reading online and on these forums, but they never mentioned a thing about it when I went for the scan with fetal medicine they just said we will check out everything else make sure that's okay (even tho I had my anomaly scan) then look at the kidneys last, and the only problem was the kidneys.. but mine are way bigger then yours I don't ask anymore cus they don't tell but I think one is 13 and one is 20 something that was at 25 weeks and I'm having a girl I think how mad! 💕 try not to worry❤️

Hi @Aries89

I saw the fetal maternal specialist for a follow up last Friday. I don't know what to make of these measurements but one kidney seems to be stuck at 10mm while the other has now gone down to 7mm (still not sure if it has gone down or whether the 10mm measurement at the time I wrote above post was for just one and they said both.

Although they had mentioned the potential of this being a marker for downs at the first appointment, they did not mention any of that this time around. They had confirmed my NIPT test and the time and said the results were satisfactory for low risk. The specialist says she does not need to see me anymore (the scan last Friday was at 31 weeks) and that I can proceed to schedule my birth when the time comes- although she has made a recommendation for the baby to be given a scan within after 48 hours of birth or so.
I have stopped googling the connection with downs because I was driving myself crazy with worry- I will deal with all of it once the baby is here.

@Danny2020 I think if they are not mentioning it, one probably should not worry that much.
They did check all other measurements this last Friday and were happy with them- so now it's a wait and see. I am probably going to schedule a CS at 38 weeks (second CS, 5th operation) so I am now counting down the weeks.

@Aries89 yes I read it's more prevalent in boys. I am expecting a little boy too. They mentioned that if there is an obstruction discovered at birth, they will put a catheter or something until a surgery is performed.
They also stressed that the normal amniotic levels and presence of urine in his bladder are a good indication that at least 1 kidney is functioning well.

Yes I'm in Ireland so it could be different here , but they never mentioned anything to me if I didn't read online I wouldn't have known it was a soft marker.. even tho I've read it's a soft marker most posts and stories I read about fetuses with dialated kidneys alone don't seem to ever end up with downs , of course not every case but all the ones I've read on forums, it's pretty common abnormality on its own without being linked to anything from my reading! Ha.. hope all goes well❤️ I can't wait for my baby girl to come 🥰

If you are on the what to expect app, I found loads of similar situations on that if you search dilated kidneys ect, might put your mind at rest

Update

Dilation went up to 12mm on each side by 20 December.
Started having major pains on Christmas Day that were determined to not be contractions, but doctor advised to deliver anyway. Had c-section on 26 December at 35+3
Scans show mild hydronephrosis but other than that baby boy is healthy- peeing normally. No damage to the structure of the kidneys.
The plan is to do a repeat scan after 3 months and continue monitoring to see if it resolves itself or needs further intervention.

@AlreadyThere Glad baby boy came safely and all was ok! How are you getting on?

Found this thread as my son was detected to have hydronephrosis at our 20 week scan back in Jan 2020. It was mild-moderate and he was on Trimethoprim for around 6 months after birth to prevent any potential urine infections. Everything was fine and he turns 4 in May and we've had no issues. He's been potty trained for over a year now but seems to be having frequent accidents recently (6 trousers changes a morning in nursery!) and emptying his bladder but then wetting himself again almost immediately after. It's unusual for him and he just says he can't get to the toilet in time, but has never struggled with this in the past. I've called his consultant for guidance but wondered if anyone had any experience of this being related to hydronephrosis in preschoolers?

@Aries89 When we had our scan, the fetal medicine consultant also told us that it was a soft marker for chromosomal abnormalities but when I tried to find out if she specifically meant Downs Syndrome or anything she said she couldn't say and it could be a whole manner of abnormalities. They really tried to push us for an ambio (they were very pushy for this, it was quite upsetting) but I think I was around 28 weeks by then and it had a risk of miscarriage which I didn't want to take. The fetal medicine midwife was so reassuring and said that technology is so accurate these days that things like this weren't picked up in the past and she was sure my baby would be fine and he was! He does only has one testicle as one never dropped and then it was later found after scans etc that he was only born with 1, but I'm unsure if that was related or not 🤔

@ThirtyTwoGoingUnder we are going on alright, thank you for asking.

Interesting issue on your boy's accidents. Has anything changed in your lives recently that may be effecting this? I hear they often regress during these times- may not be related to the hydronephrosis at all.

As for us,did scans at 2.5 months yesterday and it appears the situation has resolved itself. Pelvis area measuring 5.1 and 4.3 respectively. Thank God.

@AlreadyThere Great news!! I'm so glad it's resolved itself!

Weirdly not with our son, he has a younger sister but she was born when he was 2 and is now 19 months so he's used to having her around! The hospital said they don't have capacity to see him until his next appointment in June as it wasn't classed as an emergency, but this week he seems to have regained control again which is promising at least

Hi, I know this is an old post but just hoping someone could reply with information. I'm 26 weeks pregnant and at 20 weeks they found my baby boy has hydronephrosis (12mm on the right, 7mm on the left). At 25 weeks they found the right to be a massive 33mm and left to be 8mm. They have discussed all possible causes of this including PUV which terrifies me.
The amniotic fluid is on the lower side but they don't want to intervene yet. I am monitored closely every 2 weeks. I'm absolutely terrified of the outcome. They've gave best scenario is hydronephrosis caused by a blockage, surgery to correct when born. Worse case is that the kidneys are already damaged leading to dialysis and a kidney transplant.
Was anyone else given this information? And what was the outcome?

Hi how are you? My daughter also had hydronephrosis effecting both kidneys found in utero, the cause was unclear until she was born and they done a scan , she has duplex kidney in both kidneys and the top half's of both kidneys do not function unfortunately, she also had uretocele in the bladder .. she is on an antibiotic since she is born but still got two kidney infections she was hospitalised at 6 weeks where she went to surgery to pop the uretroceles to take some of the pressure off the kidneys for now(sorry I know it's a lot to take in I'm just letting you know our outcome) but otherwise she is a happy healthy 8 month old! She will eventually need more surgery and will continue on the antibiotics but she has the bottom half's that function normally so she should be fine🙏 they really won't know until baby is born , but in utero her fluid was always normal so I went to 36 weeks and she was born for another reason ! I spent my whole pregnancy worrying I know the feeling it's not nice.. but trust your gut and if you have any issues with the care plan ect speak up, because mine was abit all over the place .. best of luck to you and your baby boy x

Hi @Danny2020 thank you for your reply. I am prepared for surgery when he's born but it's the dialysis and transplant that terrifies me. Did they ever mention that as a possibility to you? Also how was the amniotic fluid for the baby? That is what worries me. Thank you

Hi there @Babyboymamma ! I’m so sorry you’re going thorough this. The worry can be immense. My boy (now just turned one) had bilateral hydronephrosis caused by PUJ narrowing. He’s had two surgeries (one on each side) which have gone well but of course we can only see the real success in time. Now he’s off antibiotics and just monitored. His kidney function has been normal all along, despite initial massive dilatations on both sides. He’s unusually small boy for us (both tall and his sister being very sturdy and tall), but otherwise he seems normal and is a happy baby. I would just advise taking it a step at a time. A lot can be done and things can change, so try not to lose hope. Babies are so resilient. Unfortunately I’ve found that each case is so different it’s really difficult to know what to expect. There’s a really helpful Facebook group called Hydronehrosis in Children - might be worth joining for support and to see what others have experienced. Wishing all goes well in the coming weeks and months! 🤗

Hi @Babyboymamma I hope you are well, I had a similar experience during my pregnancy but fortunately on one side, regardless the measurements were grand and I had to be induced due to the risk of not being able to have a vaginal birth (due to messurement of kidney dilatation). All I would say, and you'll probably be thinking 'it's not as easy as that' is try not to panic. The hospital always give you the worst case scenario and the function tests usually come back positive. They told me during pregnancy there was no renal tissue and they would be removing the kidney, when the tests were done there was over 40 percent function so they operated. Please don't let it spoil your pregnancy, I have undergone therapy due to the effects it had on me and wish I had more support at the time. Reach out if I can help further although understand your situation is different, just remember you are always given the worst case scenario and often it is more positive news.