multicystic kidney

[rhibutterfly]

Hi i don't know if i'm in the right place but here goes.I had a growth scan this morning and it showed that DD2 has a non-functioning multicystic kidney, does anyone have any experience with this please xx

[foolonthehill]

Hi,

This is not at all uncommon (I think about 1/2500 babies) it is slightly more common in boys than girls.

It means that the affected kidney has lots of "bubbles"..the cysts instead of functioning kidney tissue and it will not work. So long as the other kidney is normal this will not affect your baby's development in any way. Doctors may be able to feel the kidney as a lump in the baby's tummy after she is born but as she grows it will become less obvious. Over the first few years she will be monitored closely with ultrasound and blood tests to make sure that her other kidney is working well. Fortunately human beings only need one kidney to be healthy.

Very occasionally the cystic kidney is removed by an operation because it is causing high blood pressure or other problems. But this is unusual.

Before ultrasound scans were available we would never have known that so many babies (and adults) only have one working kidney...because it usually causes no problems.

Very, very rarely cysts can also be seen on the live or other organs...but you would have been told about this if any had been seen.

I am guessing that this is very worrying for you but I hope that you are reassured.

[rhibutterfly]

thank you very muchfool it is very reassuring to be given stats and outcomes

[foolonthehill]

No problem...sometimes the numbers don't help when it is your baby though!

I hope you can still enjoy your pregnancy and the prospect of your little addition (feeling broody.......but I have enough!)

[Bungalowsrule]

I do!!

My DD (11 months) had this diagnosed when she was 6 weeks old after an ultrasound. They told us she had an enlarged kidney on my 20 week scan that hadnt returned to normal by my 32 and 35 week scans.

She has had a lot of investigations (ultrasounds, micturating cystograms to check she didnt have urine leaking back into her kidney from her bladder and nuclear medicine scans to check the function of the healthy kidney) that werent very nice but shes fine!! Blood tests are the worst but she only had a few of those.

She has antibiotics (trimethoprim) every night to make sure she is protected against urine infections (its not 100% guaranteed but so far (touch wood) we havent had one) and we see a paediatrician at our local hospital and a consultant urologist at Birmingham Childrens Hospital every 3ish months. They did suggest surgery if the non functioning kidney did not shrink but it seems to have.

The only effect it will have on her life is that she is advised not to play contact sports at school.

Your DD will be fine, if shes anything like mine she will love the attention from all the nurses. Feel free to PM me if you want any more info

Em x

[samsmother]

Hi Rhibutterfly

I know you posted a while ago and are possibly nearing the end of your pregnancy now, but wanted to say it was picked up at the anomaly scan that my ds also had a non functioning multicystic kidney. We were scanned every 4 weeks which I'm sure you have been having, to check all remained well until he was out! My beautiful baby was born by surprise at 36w and had an ultrasound at 2 days old so that his monitoring could begin, he too was on low dose antibiotic as a precaution against infection. The kidney usually shrivels away by the time they are 5, but At the last scan at 34w they couldn't even see the kidney! Some invasive tests and Ultrasounds afterwards confirmed the 'bad' kidney had infact already disappeared and was only monitored for a year before being discharged from the hospital. I remember freaking out about the unknowns as, although the drs can give you the possibilities, they don't really know much until they can physically examine them once born. My 'baby' will be 2 in a couple of days and you wouldn't know anything by looking at him!