ADPKD / polycystic kidney disease 20 week scan

[ktsch]

I’ve just attended my 20 weeks NHS scan and all the checks came back fine other than the baby’s kidneys. It showed that the left kidney had multiple cysts but the right was clear.
I have been referred to a specialist but won’t hear anything until at least Monday due to the weekend.
Has anyone else experienced this? Any advice or what we should expect when we see the specialist?

There are a few things that can cause cysts on baby’s kidney. If only one kidney is affected, it’s less likely to be ADPCKD (doesn’t usually show up as cysts at 20w anyway), it’s also likely to have overall good outcome. Most kidney conditions seen on scan are not related to chromosomal/genetic/syndromic conditions. The one normal kidney can take over the function of both, without any bad effect on baby’s overall health. Specialist will go through the images +/- scan again themselves and clarify what they think the diagnosis is, and make a follow up plan with you which might involve more scans in pregnancy and also likely will involve ultrasound d for baby after birth. Good luck.

Ah hope you’re ok. Yes, my 2 year old DS has this, it was also discovered at the 20 week scan. He had multiple cysts on the right kidney, and his left kidney is fine. From what I can remember I had a further scan by a consultant quite soon after the 20 week scan and then another scan quite late on, about 34 weeks. I don’t think there’s anything they can do about it while you’re pregnant as every is so small.

His cysts were caused by a blockage I think and it basically stopped the kidney tissue developing in that kidney. They monitored the size of the cysts and said that he might have a bit of a large abdomen when born, he didn’t.

They were happy that his left kidney was normal as apparently you can function perfectly well with just one. I had a normal birth etc, and then when he was born we had to give him antibiotics every day to prevent infection until they could do a couple of tests to check he had no reflux (urine going back up his urethra) - which he didn’t.

He had a scan when he was a couple of weeks old to check what both his kidneys looked like and the size of them, and then a test where they put liquid with dye in it up through his urethra and so they could look at the kidney function on a scan.

We have seen the consultant once per year since and he has had follow up scans, but basically his left kidney is just doing all the work and his right kidney with the cysts will eventually just disappear!

It feels scary but if your baby is similar to this then honestly he has been absolutely fine and no different to any other toddler. Apparently lots of people only have one kidney and don’t even know as scans didn’t happen years ago.

Hope everything works out ok.

@TenThousandSpoons00thank you so much for your reply, obviously I googled and ADPCKD was my biggest concern as it doesn’t sound like an overly positive outcome on the whole.
Luckily I’m already under consultant led care from the birth of my first son who came early at 34 weeks so I have weekly monitoring until 24 weeks and will continue with growth scans from 32 weeks so hopefully it is something else they can monitor alongside everything else

@RedZinthank you so much for your reply and I’m so glad your little one is doing great. It’s really helped to put me in a better frame of mind reading someone who has gone through the same thing with a positive outcome.
hopefully fingers crossed this baby is a fighter too and can lead a normal happy life as yours is

Hi OP. Just want to say I had a similar 20 week scan. Our little girl has hydronephrosis in the one kidney so far. I’m due in a few weeks and fearing the unknown tbh but the most reassuring thing I have heard so far was from our urologist who said she likes her area of specialism because there are solutions to these kinds of problems. And of course that one kidney is enough for a happy, normal life. (I know it offers little consolation when we just want our babies to be born perfectly with two.) Hope you get some clarity and reassurance from experts in their field soon. Until then, we are here and will be afterwards. Sorry I can’t give much advice as I’m in the dark myself. Just wanted you to know you’re not alone and you’ll be in my thoughts too as I think about our DD.

@Mila9so sorry you are also going through this too, it’s such a worrying time anyway being pregnant and then complications arising just seem to have sent me spiralling. I’ve been told it will now be Wednesday (hopefully that I get a call with a scheduled appointment) so a few more days in the dark.
It’s reassuring your specialist has given you a positive outlook though, I hope everything goes well for you and your daughter and the birth when she makes her arrival x

Thank you. Yes, I know that spiralling well. The wait for our next appointment was absolute hell (among the worst days of my life) but I really hope you feel a sense of relief when it arrives. Please take heart that they didn’t pick up anything else on the scan. That’s reassuring. You will be monitored very closely going forward and your baby is in the best possible hands. Do you have anything to help time feel like it’s moving slightly faster in the meantime?

Hi ladies (I am assuming you are all female, sorry if not!) We had our specialist appointment today and he confirmed MCDK. That baby only had one one affected kidney and that everything else looks fine so hopefully pregnancy will progress as normal and the functional kidney will just do double the work.
I know it is such positive news and I should be so grateful this is the outcome but naturally im worried still.
I just want to say thank you all for your kind words and support, it really helped me in my darkest hour xxx

So pleased to hear this OP. Please try to find joy in your pregnancy, despite your worries which are very natural and understandable. I am still worried about my birth and what the future holds for us. I know from first-hand experience how you don’t want to tempt fate almost by doing this (enjoying your pregnancy, I mean) but today you have been told, I assume, that baby is going to be fine - or at least that was implied. Just take it one scan at a time. We are here if you need to talk to someone who isn’t close - I know it can be so much easier when this is the case. x

@Mila9I was just thinking about how you said you didn’t have long until baby was here back in March. How is everything going for you all? Hope everything went well with the birth and baby and you have recovered well x

@ktsch Thank you for asking! We are really well, thank you. My birth was magical and most importantly our little girl is doing so well. She’s on antibiotics and hasn’t had a UTI yet which is not what we expected! We were so relieved that she wasn’t diagnosed with anything else at birth. She’s had scans which are ongoing to determine what needs to be done treatment wise. But her doctors are very positive.

So please try not to worry so much it spoils the end of your pregnancy. How are things? Not long left now!