Firstly please please dont worry. I had a scan at 32 weeks with my little boy (we had extra scans due to having a full term stillbirth) We were told at this scan he had muticystic kidneys, we were also told he was a very bad case and he had no fluild around him, which told us he wasnt weeing at all. We were told it was unlikely that he would live. He was born at 34 weeks by c section (because he was breech) He was scanned at 1 day old and we were told he had no cysts at all! just a blockage in his bladder. The cysts that they thought they had seen turned out to be fluid! He had a operation at a week old to remove the blockage and now at just over two years old he has 100% kidney funtion! He is still on antibioctics to stop urine infections, but seeing we were told he wouldnt live this is not a problem at all!

Please pm if I cant help anymore.

Hi, my ds was diagnosed with multicistic kidney at a scan following the triple blood test.  He is now 6 mths old and a healthy normal baby.  The kidney was at first enlarged and swollen but then shrunk away by the time he was born.  He had a couple of examinations in hospital after the birth to check his blood pressure and urine but apart from this he was by my side the whole time as normal.  we have been back to hospital since the birth for various tests e.g ultrasound scan, x-ray (I forget what they're called half the time) just to see what kidney function there is.  His other kidney is normal and will do the work of 2 kidneys no problem.  He is on antibiotics at night every night just to prevent infection (as this could damage the normal kidney) until we can make sure there is no reflux (another scan when he is a bit older) and we have follow ups with the paediatricians every 3 mths or so but I'm happy that he is just a normal and healthy baby.  PM me if you want any more info.  Claire xx

glad i could help i remember how scary it was wheni found out, yes i did manage a natural birth she was a day early and 8lb 1oz. she was a vbac as i had a c section with my ds 18months before. i dont know how long it takes for the kidney to disappear or even if it does completly, i know it shrivals up but am not sure to what extent. when are you due? please ask me anymore questions that you may have i konw how unhelpful midwives and drs can be!!!!

Michelle and Sazzle that has been a great help thank you, Michelle did you manage to have a natural birth with your little girl? And do you have any idea what causes Multicystic kidney? i asked my consultant but she wasnt very helpful about it, im having good lukc with all the 'doctors' i have two midwives one is really dippy and doesnt care about what you are going through the other one seems to be ok and the consultant who like i mentioned practically forced me to have the injection which like i say i refused! But hey, so bascially its nothing to worry to much about just a case of going to consultant every so often. When i googled it on one of the websites it said that the kidney will disappear after 2 years, but guess thats not that case! Thanks once again *hugs*

hi my little girl has got a multicystic kidney it was diagnosed at the 20 week scan she is nearly 3 now and very healthy, she is slighty more prone to urine infections so we just make sure that she has plenty to drink, she sees her consultant once a year to make sure she has not had too many infections (which she hasnt). we had regular scans until she was born then one after she was born they said that her kidney was not functioning and that it would just shrivel up and she would not need an operation. when she was born her bad kidney was over 3 times the size of a normal one and when she was laying down naked you could see that one side of her was different to the other (sort of bulging) but that disappeared and now she looks completly normal. we are not sure about contact sports etc when she is older (have not asked) but many people live completly normal lives with only one working kidney. i hope this helps i know it is a very scary time please pm me if you want to chat more.

michelle 19+2 bump no 3

Cheekyhansy,

My friend had a baby in May, at their 20 week scan they were told he had multicystic kidney. They had scans every month until the birth to monitor it. They were told that as the kidney was so swollen that she would have to have a c-section but as time progressed the kidney deflated itself so she was able to deliver naturally. They were also told that when the baby was born he would be taken immediatley to theater where the kidney would be removed. They were reassured that he would have a perfectly normal life with just one kidney, but, understandably they were worried about having their newborn taken away so soon after he was born. Anyway, due to the kidney naturally deflating they decided it was not going to do any harm being left there and would be a better option that performing an operation on such a tiny baby. He is now a bundle of health and is monitored and scanned regularly to ensure the damaged kidney doesn't flare up or swell again, but you would never know he only had one working kidney.

Hope this helps a little, it won't stop you worrying, but please know that others have been in the same position as you and everything has turned out well. feel free to pm me if you would like me to find out anymore. Good luck xxxxx

Hi,

I'm sorry to hear that things were not good at your scan. My wife and i had a similar experience at ours and were told by the sonographer (of all people) that she thought our little boy had Downs due to his femur length. We were left a little distraught and had to go back two weeks later for a growth scan. Thankfully that was fine and baby was bang on normal for his growth.

The point i'm trying to make is that mistakes can happen and every sonographer sees things a little differently. Is it possible that you could have been mis-diagnosed? If so i'd ask for another scan. However, i have done some breif searching this morning and it appears that children with multicyctic kidneys live happy and healthy lives. I know the initial shock can be difficult to deal with, but with a bit of research you can often be reassured.

All the best for the future and i hope all goes well

Doors

i dont know anything about the probs u r havin but my bro is 24 yrs old,and he only has one working kidney the other is v small and does nothin at all,his other kidney works harder to compensate for it and he has a normal life,and drinks with his pals etc and is just fine.I wouldnt recommend someone with kidney troubles drinks alcohol much but theres no telling him,and he hasnt had to go to docs for yrs with it.hth x

Hey there,

we have a friend who had a baby in Feb that has a multicystic kidney and she is absolutely fine x

She had a few tests when she was born but they are going to leave her be.  Apparently the working healthy part of her kidney over time will grow and take over the function of the bad side, which will shrink and probably just disappear.

When they saw the consultant he said that many people live their entire lives with only 1 kidney without ever knowing, the only thing she won't be able to do it donate 1!

I hope all goes well, try not to worry and enjoy your pregnancy,  your lo will be given the best of care when born x

Sorry the scan didnt go well hun and that you have a usless consultant.

I havent been in this situation so cant really comment but have you tried google. it may come up with a support group or information that can help you more.

Goodluck and i hope you find the answers you need.

hi iam so sorry to hear your scan didnt go to well,

when i had my 20 week scan with my 2nd DS who is now 16 weeks old we were told that his femur in is right leg was only half the size it should be. so know how upset, confused, worried and all the other emotions your feeling right now. we have just recently been told that he will have to have his leg amputated when he is two as they can only lenghen up to 40% and he has over 50% missing.

when you see the consultants make sure you go with a list of all the things you want to ask, also research on the web, you will read things that scare you but i found its better to be well perpared. also i asked to be scaned every 4 weeks just to keep check so if your not have regular scans then ask for them as your well within your rights to have them.

if you need a chat just pm me and i really do wish you all the best and sending you lots of strenght on the journey ahead xx 

i'm sorry to hear that hun  if your consultant is not giving you the answers you need or deserve then is it an option to request a diff consultant

Hope all goes well for you

Nat 27+5

On monday i had my 20 week scan and things didnt come back too good, my baby has multicystic kidney and also club foot. so now i have to see a consultant on a regular basis who isnt very supportive and not very helpful with the question i have asked, It has emotionally drained both me and my hubby i was wondering if anyone had been through multicystic kidney with there baby, this is the main thing on my mind as club foot can be sorted out after birth but so can the kidney but still i just need to know if anyone is going through the same or has been through the same and how things are with their baby please get in contact.