Polycystic Kidenys

[purplerat]

Hi all,

At my 23 week scan everything with baby looked good, except the sonographer thought the Kidneys looked slightly enlarged and cystic, so referred me to a renal specialist at Kings College Hospital for another scan. They said they were enlarged but not cystic but thought I should be scanned once a month until I give birth just to monitor the situation.

At 27 weeks I had the next scan at the original place and the sonographer still insisted the kidneys were cystic. Somehow I ended up being referred to my local hospital too (I was having scans at my GP as they have ultrasound facilities). Had a scan at 28 weeks but they couldn't look at much as they need to wait two weeks for growth scans so I had another at 29 weeks! The sonographer there also thinks the baby has echogenic (whiter coloured), enlarged, cystic kidneys and is referring me back to Kings to be checked again.

I have also got a consultant now who has referred me but know one will tell me what this means. Apparently the baby could be completely fine, but there is a chance the baby could have serious health problems. I'm guessing they just don't want to misdiagnose incase they get it wrong, but not having any idea of what it could mean and them not answering my questions is worrying me a lot. Baby is very active though, and very large (about 4 lbs 3 oz at 29 week scan) and I am not sure if this could be linked? (I don't have GD as I had the GTT and it came back clear).

They are saying it could be genetic but both me and OH has our kidneys scanned and we are normal. Have any of you out there had similar issues or know of any babies with polycystic kidneys? I just want to know what sort of chances my baby has of being absolutely fine.

Sorry for such a long post, just wanted to get it all out

 

[mamato2more]

If they actually found cysts, this is called ARPKD...Google it..My brother has it, and as an adult, is causing quite the problem...He is an anomaly though..There is much they can do, so don't be too scared, and just wait and see. Sometimes, it's not what they think!

Also, you and your hubby would be carriers, but not have it.

 

[purplerat]

Thanks for that. Yes the sonographer pointed out the cysts on the scan.

Did it cause him problems as a baby/child?

x

 

[mamato2more]

That's why he's an anomaly..He popped one during childhood, and somehow, it made it stay away until he was an adult. So, he has the childhood form, as an adult..He also has different problems, not related, but right now, it's pretty bad..Because of his other problems though, they cannot really treat him. It's a good thing they found this out on your baby..they can get right on it..Don't use what I have said as a diagnosis..Many things can happen, and I really don't know much about children having it..Get as much info as you can, so that when the time comes, you have good questions, and lots of good answers! I hope all the best for you and the babe!!

 

[purplerat]

Thank you. I hope your brother will be ok.

Yes until he is born all they can do is give me regular scans. They have said once he is born they can scan him separately to get a better idea. They have also said that he is drinking and urinating in the womb properly which is a good sign None of his other organs look abnormal either which is also good.

I'm just going to stay positive. In about 10 weeks or less I should know more whats going on. It's just a waiting game really!

 

[mamato2more]

Gotta love the waiting game, eh? That's just never fun..
Keep us updated..

 

[purplerat]

Yeah, never fun, but must be done!

I will

 

[purplerat]

Well William was born on Sunday and has been at Great Ormond Street Hospital for testing. They do think he has ARPKD and also has low blood pressure/ high insulin levels. Hopefully we will find out more soon but he doesn't seem to be coping too badly and has got excellent care. I am staying with him in his room and can be with him all the time. xx

 

[mamato2more]

I have been wondering about you/him...Keep us posted!