20 week scan and renal dilation detected. Any advice welcome, feel so sad....

[Lizzer]

Hi all, I'm feeling so I have just had my 20 week scan and one kidney is 10mm the other 6.4mm but the enlarged one also has a blocked and swollen tube. I have checked for messages on mn and found some relief that some of you have been through this and everything was ok.
It's just so horrible thinking that something is wrong and you can't do anything to fix it.

We've been refered to newcastle RVI on tuesday (a 6 hour round trip, but I'm not bothered as long as they have the specialist care there) So I hope we will get more answers with a 3d scan. Anyone had one?

The worst part is feeling so bad that I might have done something to hurt the baby, I'm thinking of every cup of coffee and that glass of wine twice a week I've allowed myself since 16 weeks pg. Caffeine especially is kidney related, I've had 2 mugs a day. I'm not having any more that's for sure, but do you think it could be related? (sorry if I'm sounding slightly hysterical)

Lizzer, my nephew had a kidney problem detected in utero. They monioerd him for the rest of the pregnancy and when e was 3 days old he had surgery to remove the enlarged, blocked kidney as it was non functioning and they were concened infection could occur and damage th eother kidney. He has regular checks (including injection of radioactive fluids (not sure what)) to check flow etc in other kidney and is on daily antibiotics for at least 2 years to protect the remaning kidney. But he recently had his first birthday and is thriving.

Thanks comeoveneer, I keep telling myself that if worst comes to the worst at least there is another kidney that people function quite well with one. I just don't know what to expect from the pregnancy now, its been a rough year and the pg and baby was supposed to be the GOOD news

3 of my boys had this found whilst i was pregnant. It can be something called kidney reflux. This means that the valves don't shut-off properly which then lets urine back into the kidney and this swells it up.

It's not something that you have caused in anyway..it's something that just happens and it can run in families.

You will find out more at the next scan. If it is this 9/10 cases fix themselves. And this did happen for 2 of my boys. One had to have an op at Guy's. Your baby will go on low dose anti-biotics when he is born and you will have more scans to keep an eye on things.

Won't go on too much just incase it isn't the same thing.

Let us know how you get on.

Hi
My DD2 has got a duplex kidney system which is where the top part of her kidney does not function and has a swollen tube coming from it. We found out at 20 weeks and I was devastated. However, I took the view that she had 2 kidneys!!! It could have been her heart or brain !

Had another 6 scans until she was born. They showed a slight worsening. She was born normally and otherwise healthy in 2006 a
nd is now a chubby, cute 14mth old.

5 days after her birth she had a scan and has been on antibiotics ever since.

She needs surgery to remove the upper part of the kidney but then all should be well. I have had no one to chat too. There are no help groups but I am now well informed and have no problems with the situation.

She has been hospitalised for urine infections twice but got better after IV drugs. She is having surgery in the next 2 months in Leeds.

It is scary, but it can be solved and I am very positive and if you saw my DD you wouldn't think there was anything wrong.

Will look at this thread again regularly if you want to know any more.

and also it might be something of nothing - I was told ds had renal pelvic dilation at 20 wk scan, still enlarged at 34 weeks, he was put on a course of antibiotics for 6 weeks after he was born, told to bring him straight in if he had fever, off food or more than 2 dry nappies, had a scan at 6 weeks as they had to wait for him to be big enough and everything was fine, he used to wee on me everything i took his nappy off! he's 14mo now and we've had no problems.

good luck x

Thanks so much for all your messages, we've been trying to take the view that it will all be ok but its hard trying to stabilise all my emotions when its so new but slowly its becoming 'normal' and we can begin to deal with it. Dp being very positive and hope that will carry me through the tough times as I'm (obviously) being emotional at the mo....

I'm so pleased we only have to wait for 2 more days before we find out more, I've done a lot of research online and (yet again) thank god for mn!

Idobelieveinfairies, I wonder whether your boys' condition is what they were refering to in hospital about a 'flap of skin' as they put it, on the tube of boys' kidneys that is quite common? I'm glad your 3 are all well.

DITDOT, I will listen out for that condition when they tell us more. God it must be so awful for you, I bet you'll be glad when its all over. I keep thinking about surgery and its impossible to think about when you haven't been through it before.Well done for remaining so positive, I bet your dd's gorgeous

insywinsy, yes I was reading that sometimes it's something worth keeping an eye on but that doesn't need treatment, I guess that is the best case scenario. I hope it is a little boy, she hinted that could be the case but we'll find out for sure on tues, but I'm not looking fwd to the weeing upwards action!! (only used to dealing with girls)

my eldest son had this on the twenty week scan, i was horrified and really worried, the hospital sent me away with a photocopied handout i went to my gp who was helpful and put me in touch with the british kidney association, who were great.

i had follow up scans during the pregnancy which continued to show the same problem, when ds1 was born he was put on preventative antibioitics so he didnt get an infection and we stayed in hospital for a few days to make sure he was weeing ok, then went home. he then had scans at 6 wks and three months, still showed same prob but he was healthy

they started to talk about putting a catheter in and doing some tests which worried me but the british kidney ass came to my aid and gave me all the info i needed.

At his next scan, at 4months? i think, he had a huge pee as they were scanning him and the blockage cleared and the tubes became a normal size, mad i know, but that was it, we had one further check up where all was fine and he has been fine ever since

hope it all goes well for you, and dont blame yourself, its just one of those things, scans are getting more and more detailed and so picking more things up, most of which will cause no probs later on will be thinking of you xxx

3madboys, that is so good to know, glad all is well,and totally mad that it just cleared up there and then! Thanks for your support

Lizzer - lol that you think its a boy, my consultant hinted that ds was a boy (we never offically found out before birth) as he commented boys are just too lazy to pee on schedule

hope you're feeling more positive today

Oh Lizzer, I've only jsut read this, I hope you get good news next week.

My DH had a multicystic kidney (totally useless) and enlarged other kidney (to compensate). Obv they didn't have scans in 'those days' so it wasn't detected until he was 10 years old.

He is perfectly fine with his one large kidney.

I hope everything works out fine for you. I am sure that nothing you have done will have harmed the baby.

Look upon it as a good thing that they have picked up the problem at this stage so are prepared for when s/he is born.

I know its a hard time for you, but wanted to give you some more words of encouragement and support, if it helps. I hope so.

My bf's son kidney problems inutero too. I cannot remember exactly what is was called, but sounds almost identical to your situation and that of many of those posting on this thread.

Firstly, she was assured it was absolutely nothing that she did or did not do in pregnancy. Secondly, that it was more common in boys than girls.

When he was born, he went to bristol childrens hosp and had a small op to remove a tube and has gone back each year for checkups which are all ok.

It has taken him a little longer to be potty trained, he is 4.5 and now dry just before he starts school, but this is the biggest impact on his life.

His kidneys both work well, his bladder is a little less strong, but nothing that will cause him any problems as he grows up.

He is a happy, healthy adorable boy, spent the afternoon with him and my 13month year old and had a great time, as always.

I hope you get the best possible outcome for your baby.

Kidney problems tend to be genetic -- extremely unlikely, if he turns out to have any issues, that it's anything you did or didn't do.

Ehllo everyone and thanks for your reassuring words www and lemonaid, I'm trying not to blame myself so much now but at the time I felt like the worst pg person who ever lived

Thanks for sharing your stories Pavlovthecat and Wilkie, I am so relieved to hear that everything worked out ok. I am totally taking the view that at least there are 2 kidneys and people can live quite happily with one. Pavlov i think what your ds had is the operation they were talking about in hospital so its good to know your ds is super duper now

Well, we have the apt in Newcastle at 3pm today, we've been told there may be a ot of waiting around so off to buy a few rubbish gossip mags for the duration.....

Will post when I find out more. Thanks again for your kind and helpful words

Hope all went OK Lizzer x

Hello I'm back, well it all went ok really. We are having a boy! The doc was v kind (apart from getting annoyed at lo for not turning round so he could check his heart and bits clearly!) HE said it was v common problem and occurs in around 1 in 100 scans. The tube from the kidney is slightly narrow so although the kidney works fine, it can't get rid of all the fluid at once so is a backlog, hence the swelling. It usually clears on its own by a 1year old. He will need antibiotics from birth but I've been told its a low dose and hopefully bfeeding will help keep his system in balance..

So insywinsy and 3madboys this is the same condition as your boys had, definitely common in boys.

Worst case scenario, if the tube doesn't sort itself out and gets worse they will operate but they said with the moderate swelling on ds's (ARGH I can't believe I've written ds, I've only ever written dd, that was my first time!) kidney it woud only be a 1% chance of that happening.

We feel so relieved, thanks to everyone who posted and to anyone who has a bad word to say about mumsnet they can f off. I wouldn't have got through this so well, without hearing your stories, so thanks for sharing.

DITDOT, sending you good wishes for your dd's operation, hope all goes well, pls let me know

Oh and I can have a coffee, and I haven't done anything bad to him, like you all said (still it makes you think about it more, was totally more lax with this pg but actually I'll stay off the glass of wine til after he's born, its not worth it)

Lizzer, glad to hear your appointmnet went well my DS1 had this as it was exactly as you were told today by your consultant.

DS1 was on anti-biotics from birth he had several scans and checks on his kidney function but it corrected itself and he was able to stop his anti-biotics on his 1st birthday.

Good luck with the rest of your pregnancy.

Great news!! Enjoy the rest of you pg now

my 18 month old daughter was born with dilated kidneys. she was on antibiotics and on day 10 post birth she had a scan which confirmed it had not cleared up had to carry on with antibiotics . then she had a mag 3 test which confirmed it was still no better . a few months later she had another scan confirming there was some improvment i was to stop her antibiotics . then last week she had another scan to which i have a letter with the results on saying her kidneys are now worse she has to have another mag 3 test . i have just heard that dilation of the kidneys can be a form of downs syndrome has anyone else heard this please let me know

Are you worried your DD may have DS? If so, it would have been dx by now.

When my 3rd baby showed up problems in his 20 week scan it was linked to Edward's Syndrome but, again, you would know by now.

am real worried as she has done things a lot slower then my other two children shes only just walked

What exactly are you worried about? 18 months for walking is not uncommon.

thats not what my health visiter said she also has glue ear

Keisha, dilated kidneys (renal pylectasis/hydrophrenosis) is not a form of 'Downs Syndrome'. It is sometimes linked IF SEEN ALONGSIDE OTHER MARKERS on an anomaly scan with a slightly increased risk of Down's Syndrome, and it might be this that has confused you. It is seen in approx 3-5 per 100 of all anomaly scans and on its own means very little (though is monitored as others have said). My 3 dds all had dilated kidneys on 20 wk scans and, after propylactic antibiotics, it cleared up on its own. TBH I don't think Down's Syndrome is something that you 'suspect' at 18 months...

Clearly your HV doesn't know everything. There are plenty of children who don't walk until 18 months and older sometimes.