Multicystic Dysplastic Kidney Disease

K&S2005

We just found out yesterday that our little girl has muticystic dysplastic kidney disease. I've been doing as much research as I can, but I was wondering if anyone has a child with this or knows a child with this and could give me some more information. 

finallyreilly

We found out at 20 weeks that our son has it - actually the high risk specialist we see said it was polycystic but our OB calls is multicystic.  We are scheduled to see a pediatric urologist about a month before my due date to discuss treatment.  We were orginally told that they would want to remove the diseased kidney after birth, but we have read a good amount about it and it seems like now they just monitor the bad kidney to make sure it is not causing any problems and watch to good kidney to make sure it is functioning properly.

Not sure if this helps at all.  GL

Lulu13

My son has/had it.  He was diagnosed at 20w with Polycystic Kidney Disease also, as I have a strong family history, but after birth they changed the diagnosis to MDKD in his right kidney.  He was born with a very minimal amount of reflux at birth, but that was easily cleared up. 

The majority of the tests they ran within the first couple months of birth, and then his kidneys was monitored via ultrasound every 6 months.  Usually, a non-functioning cystic kidney will start to be shrink.....but my sons did not shrink and got a little bigger.  At 18 months we started discussions about having it removed.  It wasn't working and there is a higher chance for tumorous activity in cystic organs, so we made the choice to have it removed.  That was done at 24 months. 

It was a long surgery...but minimally invasive.  The worst parts were watching him being put under and then watching him wake up afterwards.  We spent 1 night in the hospital, but they would have released us, I just wasn't comfortable with it.   He was sore for about 1 1/2 weeks but was on restricted activity for 6....not an easy thing with an active 2 year old boy.  Lots of DVD's and playdough!  He recovered beautifully and it's the best thing we could have done for him.  I think it was almost harder for me to make the decision and watch him the first 24-48 hours. 

 Good luck with everything!

 

 

slacy

Our son was dx with MDKD when I was 22wks along.  It affects his left kidney, and I had a follow up scan 4 weeks later (26w) and then they didn't want to see me again until 34w (2 wks ago).  

At my 34w scan, they didn't see any evidence of MDKD or his left kidney for that matter, so it looks like the affected kidney has already shriveled up and that we will most likely not need surgery to remove it someday (unless the scar tissue causes an issue).  My peri had not seen that happen in utero before - since he had such a clear-cut case at 26w - so she called the pedi urologist that we'll be seeing and he said that he had seen the kidney "disappear" in utero before, albeit uncommon.

I'm scheduled for an induction at 38w (9/1), and 4-5 days after he's born, we'll go for a renal u/s and voiding urethrogram (to check for reflux). 

My peri was very up front and honest (which I appreciated) and really put things in perspective.  In the realm of birth defects, if you're going to have one, he said that this would be one you'd want to have.  Plenty of people live in this world with just one kidney - that's why God gave us two.  I may not want to have my son play football or other major contact sports, but other than that, he should be healthy!

Best wishes!

Sara

finallyreilly

slacy:

My peri was very up front and honest (which I appreciated) and really put things in perspective.  In the realm of birth defects, if you're going to have one, he said that this would be one you'd want to have.  Plenty of people live in this world with just one kidney - that's why God gave us two.  I may not want to have my son play football or other major contact sports, but other than that, he should be healthy!

Our Peri said the same as well.  Many people today have one functioning kidney and don't even know it.  He told us as well that as much as you don't want to have anything wrong with your child, if you are going to have something, this isn't a bad thing to have.

K&S2005

Thanks for the replies! I'm going to talk to my OB and my specialist about getting in to see a urologist or a nephrologist before she's born to set up a plan. It's nice to hear about other people going through the same thing and having a good outcome.

laf82005

i'm a little late replying, but our son was born on august 9th. he was diagnosed at 20 weeks with a multicystic kidney (his is on his right side). like the other posters, i went to follow-up u/s for the rest of my pregnancy and met with the pediatric urologists. everything else looked fine throughout the rest of the pregnancy (his left kidney, fluid levels, bladder, etc), though of course that didn't help us with how worried we were for him. i'm happy to say that he is doing great & is perfectly healthy with just one fully functional kidney. he had an u/s 48 hours after birth, which confirmed the diagnosis as MCKD, but also confirmed everything else looked good. we're going for a 1 month u/s in 2 weeks & then will decide whether to get a VCUG done to test his kidney functioning. i hope you all have great results, i know how scary it can be.

jamesrena

We just found out last week that one of our twins has MDKD on both of her kidneys. Needless to say, there is NO treatment for this disease. We had never heard of it. So I tried to do my own research and everything that the doctor told me was in all of the articles that I had read. Now, I'm finding out that the outcome of that baby will determine how the healthy baby comes out to be. In my case, the doctors say that she will most likely be stillborn or die shortly after birth. This is devastating news, and I will continue to find out more information about this. Please let me know if you have found out anything about it. God bless you and your beautiful daughter.