Severe hydronephrosis

[LSforum]

I'm hoping someone with knowledge or experience can help us understand the potential outcome for our baby son.
At 20 +1 weeks his anamoly scan picked up hydronephrosis on both kidneys 7.9mm and 6.2mm, dilated ureters at 5.8mm. When we went back at 20+4 days for a follow up scan the hydronephrosis had become severe: 22m and 16mm. They also noted that there was very little normal renal parenchyma, which I understand means normal functioning/ looking kidney tissue. This last part leads me to expect a very poor prognosis and if I'm honest a part of me has already to started to grieve horribly.
I know mild renal dilation, even bilateral, has excellent prognosis; but this is severe and clearly worsening at an alarming rate. The only thing that gives me a tiny bit of hope is that the amniotic fluid remained normal. I understand if there is no urine output the fluid levels would drop (and mean the lungs and body will not be able to develop).
We are due at a specialist in 48 hours, but has anyone had experience of such a severe case or can anymore with more knowledge help me prepare for what we might hear.
This is my first pregnancy; I can't bear the thought that there is no hope and am desperate for some understanding- even if it is to confirm my fears that we might lose him.
Thank you

I don’t have a lot to add but just wanted to say I’m sorry you’re going through this. I haven’t got any personal experience of this, but the specialist will likely scan your baby again in detail and then talk you through everything. Don’t be afraid to write down questions you want to ask them, and get them to repeat things if you’ve missed something - it’s such a stressful time that it can be really hard to take everything in. Good luck, I hope your appointment goes really well.

Thank you for your kind words. The specialist was very clear and gave a much more hopeful prognosis than our local hospital. The measurements for example were less.
There's a long way to go to know what the outcome will be and the spectrum of those is pretty vast; I will try to update this thread so it may help others.

My 11 week daughter was taken to hospital and put on antibiotics due to a UTI infection. When they did a scan of her kidneys they said both kidneys are dilated and she had hydronephrosis. Doctors said they're not too concerned as it's mild but as a mother I can't stop worrying. They'll be carrying out further tests including a scan of her bladder and then further diagnoses. I'm really worried as it's both kidneys.

Hello, im
really sorry you are going through this. It is horribly stressful. Know that now they’ve identified it they can work on finding out cause and any necessary solutions. As I understand it if it’s mild it often goes away over time on its own as they grow. If there’s a cause it can usually be managed.
my own experience won’t be too helpful as my son turned out to have an exceedingly rare kidney complication; but I’m currently walking him in his pram at 18 months old and he’s expected to live a long life. We did go through many operations, but again the prognosis is good for his one kidney.
if there are any questions I can help with I’ll absolutely try to answer; it was a long lonely journey for us.
thinking of you and your daughter

Truly so happy it worked out well for you. They don't really seem extremely concerned for my daughter, they've given us these syrup antibiotics that I'm required to give her every night before bed unless her scan. They've also said they'll check in 4-6 weeks to find out the cause. It's just extremely difficult not worrying. Why was your DC required surgery May I ask c

I’m sure you’ve done some Googling ( as I did when it first showed up in pregnancy), and hydronephrosis if it’s mild is usually not something to worry about (as you, say they aren’t too concerned at the moment). So they may do a wait and see if your scans don’t show up anything anatomical that could be causing it.
there are anatomical conditions that can cause the kidneys to swell.
my sons was being caused by a very rare set of anatomical abnormalities; these were addressed as best they could be surgically so his kidney could drain effectively.
we have only just come off the trimethoprim; it wasn’t a bother to give him until he got older and fought it a bit. You might want to consider optibac baby probiotic drops if she’s going to be on it a while ( antibiotics mess with your gut flora) but of course do ask your medical team as this was something I decided to do not something they suggested.

Hello OP,

I've just come across your post and am currently in a similar situation at 28+3. Our daughter's right kidney is measuring at 20mm which the consultant said is sever and the left is showing swelling, although, it is measuring at 7mm. The consultant was okay at explaining but your post put all the pieces together. I've read its usually caused by a blockage? The renal tissue appeared good on the left kidney and okay she said on the right. From the notes, the liquor volume has decreased - I don't know if that's an association with this? I go back in just over a week for a growth scan and then back to the consultant for another scan for her kidney. Did it continue to get worse for your son? Did they induce you? What was the procedure please? Thank you!

Hey Pinkshamrock,
first of all a big hug to you- it’s so hard, bewildering and frightening where you are now.
I will answer what I can, but please also be aware I’m only a mum not a medical professional and my experience and knowledge comes from an obviously limited place.
my son is now two and doing great; however he’s a little different in that his case is rare ( second ever reported rare). He only has one kidney, a horseshoe kidney, with some very unusual anatomy draining it.
His kidney function is very good, normal in fact currently, no one can say however what his future holds.
they seem to have identified your daughter has two kidneys, this is good news. To reassure you, even if one kidney was lost due to damage she can live very normally on one functioning kidney.
yes some kind of blockage is likely but it’s a huge field of what might be causing that blockage- from something she will grow out of to something that needs dealing with.
it sounds like she might need treatment when she’s born if the hydronephrosis is severe, but that’s not certain.
We were monitored closely after twenty weeks and we were induced just before 39 weeks but only because I had started leaking fluids, not because of the kidney issues.
you should monitor your amniotic fluid levels and ask them questions about it at scans, if these do decrease it might lead to discussions about inducing at a suitable developmental point. It doesn’t sound as if your fluids are worryingly low though? I hope they’ve explained how the baby’s kidneys produce amniotic fluid and how this is important for the baby’s lung development? Again do take comfort that at 28 weeks your baby’s lungs are well on the way to being developed.
My sons hydrophrenosis did get worse after birth and that’s how they discovered his rare condition. It’s not unusual however to have to monitor the swelling after birth and in most cases it will go down as they grow. So try to relax in the last weeks of pregnancy and make sure when your baby is born you get proper follow up care to monitor.
wishing you ever health and happiness and very happy to try to answer any questions you have

I should also add, measurements are extremely hard to take on baby’s ( even after they are born- even when my son has scans now at the UK’s best children’s hospital). The picture you have now may be very different to reality - remember we are talking millimetres here- so stay calm and walk the path in front of you 🌼

I've just stumbled across this thread. My 9 month old son has a horseshoe kidney and severe hydronephrosis. Worsening since he's been born. He's had a lot of tests and is now waiting for a Mag 3 as the most recent ultrasound has shown the fluid is increasing despite no sign of obstruction on his DMSA. I'm reassured that your son is doing well and I hope that continues. Is he still on antibiotics or has that stopped?

Hello Amber, you must be in a very stressful place right now and I hope you have a lot of support around you.
we stopped the antibiotics at about 1 year old as he hadn’t had any problems with UTIs and whilst he has a medically unique drainage system, it wasn’t blocked after the surgeries to repair the ureters.
The mag3, I suspect you know, is going to look at how your son’s systems drains, it may also identify which part of your son’s kidney works harder than the other and most importantly for any blockages that aren’t showing on the ultrasound. Ultrasounds when they are so little can only see so much. The mag3 can show a great deal of detail so hopefully you will get some answers; though I willl say - and it was very hard for me to grasp this concept at the start when all you want are clear cut answers- this is going to be a journey you go on with your son.
the mag3 was quite hard when my son was a baby, they have to restrain them so you may find this hard to watch - if your son likes watching tv having something for him to watch on a tablet helps distract.
you probably know that horseshoe kidneys are very common and many people with them don’t experience any problems; I hope the prognosis is good for your son. Have they talked about his creatinine levels from blood tests?
mine is now three and thriving; his system is medically unique and functions in an unusual way but he is expected to get by on his horseshoe kidney for at least his childhood possibly into adulthood. He gets seen twice a year at GOSH to keep an eye on things; we are cautious when it comes to many things regarding his health but he is very healthy and happy and I thank the universe every day for whichever lucky star kept him safe against the odds ( his case was as I said very unusual and complicated).
if I can answer any other questions for you please don’t hesitate- the information that comes out of the mag3 ( drainage, percentages of function on each side) can take a while to get your head around so do write it down so you can follow up with your consultants and put it all together with what his blood tests have shown kidney function wise

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?

Hello, I’m the OP and hopefully there was some useful info my other replies to people above.
i do hope you are doing ok; I remember very well all the emotions and questions you must be experiencing.
when your baby is born you will start getting more answers and unfortunately until then there is only so much they can see on ultrasounds.
take good care of yourself. My son is now 3.5 and doing well

Hi @LSforum Hope your son is doing well. My son is now 4.5 and was also diagnosed with hydronephrosis in his left kidney at 20 week scan although it turned out to be mild on birth and whilst he was on trimethprim for a while, he's now off it and all seems ok.
One thing I just wanted to ask was how your son's growth has been? My son is 4.5 and is considerably smaller than all his classmates (89cm). He's fallen off his centiles and I haven't had to buy him more clothes since he was 2 years old to give an idea. He's been referred to paeds but they all seem to think that as my husband is quite small, this is to be expected, however I think it's abnormal for him to have not grown in 2.5 years. Developmentally, he's sharp and active and getting on well since starting school but I'm now wondering if the lack of growth could be linked to his kidneys. He gets regular checks to check the kidney dilation is not getting worse but has your son's growth continued normally along his centiles?

Hello Vimto, my son has jumped around the centiles in terms of height/ weight but he has continued growing in a pretty normal fashion thus far at almost four. I think it’s normal when they are young to jump around a bit. However if you are seeing a slow down or little to no growth you are definitely right to want it checked out. Kidney function and disorders are complex ( more than I understand certainly)but I think some can have effects on many different aspects of the body including growth.

You, having been through the stress and journey of having a baby with a health condition, probably have hyper focus and you could be picking up on something- sometimes consultants don’t see the bigger picture/ have the time/ etc. Pushing them to check further and have a referral to find out that everything is ok is absolutely the right thing and you do have to push them/ ask the questions until you are satisfied. It’s the only logical step really.

i hope everything turns out to be fine for your son

@LSforum Thanks for replying so quickly. I'm glad to hear your son is doing well and growing along his centiles!
I think I will push it further to get it looked at incase something is missed. Thank you ❤️

Hello- our baby was diagnosed with severe hydronephrosis bilateral at 20 weeks due to fluid build up. Amniotic fluid is still stable. We are being referred to a pediatric urologist this week. At 21 weeks, it got worse. Any encouragement or suggestions would be valued!!

Very much hope the urologist can answer some questions for you. Manage your expectations in advance of that meeting as there is only so much they can see at this stage using ultrasound- we are talking millimetres here in the measurements. Do write down all your questions and ask lots. Stay positive- it is a very common condition in pregnancy
and the the outcomes are diverse. Sending you support. Ps I think there is Facebook group now for hydronephrosis which may give you a space to chat to others too.