MCDK

[Alyssa1208]

I am currently 20 weeks pregnant. I went in last week for my level 2 ultrasound. At this appt the tech sent in a dr. to explain to me her findings. She found that my son has a Multicystic Dyplastic kidney (left kidney) His right kidney is completely normal and my fluid level was oaky. I have to go back every 6 weeks for measurment on my fluid. My question is, What are the chances, if any, I know if he has it in both he will not survive which scares the heck out of my husband and I. Any information would be helpful! Ive done alot of research and really can't find anything about the other kidney developing it. THANKS SO MUCH!


This discussion is related to Multicystic Dysplastic Kidney (MCDK).

[skdanna1986]

Hey, How is your baby doing? My 3 month old son has MCDK in hi left kidney and renal dysplasia in his right. His is functioning at 20 % they tell me... I dug and dug for information on everything and  I never heard of the hydrophenosis and mcdk together but my son's nephrologist did check for it. I didnt have all the screening you guys did through you're pregnancy.  In fact i was told his right kidney looked normal. Then i asked the pediatrician to do another ultrasound after he was born. She sent us to children's hospital of MI. My sons creatinine, BUN, pottassium and phosphorus has to be monitored once to twice a month. He is on meds to keep away infection, iron, Similac pm 60/40 which WIC covers. It is 19$ a can. He is also takin sodium Bicarbonate and goes to a chronic kidney disease clinic. I hope this helps.

shantel you can e-mail me at
***@****

[Alyssa1208]

hey girl.. i found a really cool board on yahoo groups..wanted to give you the link to join!!    http://health.groups.yahoo.com/group/MCDK all the woman here are or have been in our shoes and they are awesome.

[Alyssa1208]

oh my thats not good news! I was thinking about you this morning.. I knew you had the appt coming up! im so sorry to hear. My appt is the 15th so ill be able to update you then. Praying nothing has changed..I still feel him moving like crazy daily so I know hes okay so far! I get so nervous if i go long periods not feeling him squirm! Have they said anything about possibly having to induce you or anything?

[lilmamaof3]

Hi Alyssa :) Im very sorry to hear about your brother. Thats alot to go through and now with this. We had our appointment yesterday. We knew going in that her left kidney has multicystic dysplastic kidney disease and her other one is enlarged but we thought it was because it was overworked because of the bad one ... but thats not exactly the case. Her right one has hydrophrenosis. So both her kidneys have not formed correctly. They are hoping that her right kidney will be good enough to keep. After we deliver at the childrens hopsital she will go through a series of tests over the course of a month. She will have ultrasounds and dye testing to figure out the function or non-function of her kidneys. I asked the ultrasound tech at the specialists how often she sees this. She said that she sees hydrophenosis and she sees multicystic dysplastic kidney disease, but she has yet to see the two together.  So this I am guessing is why we go every week. So I think our cases are slightly different so take comfort in knowing he has definately one good kidney and thats probably why your visits are not as frequent as ours. The doctors have told us not to depend soley on the ultrasounds as they are inconclusive until they can do actually testing on her when shes born. So it's more wait and see :( Please let me know how your lil guy is doing at your next visit. Take care.

[Alyssa1208]

Im so glad Im not the only one scared to buy things!!! I totally know what you mean!!! I know everyone says oh he will be okay no worries, but that thought is still in the back of my head. I feel so depressed about it at times.. I just want him to be healthy and be okay!!!! I just lost my brother recently due to a motorcycle accident and I dont think I could handle something else!! I hate that I think this way..but its hard not too! Anyway, I havnt done ALOT of research on this becuase everything I find is all the same things!!!! Thank you for sharing that link.. Im going to go look through it now!!  I havnt heard anything about potters disease. I guess I need to start writing these questions down!!! Im glad to have found someone who is going through the same things!! Its a little more comforting!

[lilmamaof3]

Aww wow I hear you! I know I break down alot when I am alone, and cry :( It is awful to be told your baby has something that they do not know that much about. And that they have to watch it over the course of your pregnancy to see how it grows. Pregnancy is supposed to be an exciting time and enjoying these 40 weeks is hard just not knowing. I feel better knowing I have found you, someone that is going through the same thing. I know I was so afraid to buy things for her, paint her nursery, all the small things that are taken for granted when your baby is healthy. I wanted to share a link with you where I found that contact sports are not good, again a doctor did not tell me this but the reasoning makes since ..... to avoid them because if they take a hit to the only working kidney it could be a bad thing http://www.chw.org/display/PPF/DocID/40838/Nav/1/router.asp . Our fetal cardiologist asked me if our doctor mentioned Potters Disease .... so I googled of course and there is some more information there. MCDK is mentioned in Type II Potters. But perhaps you will find more information there like I have. If you are like me I dig for more information if the doctor is not giving me much.... just looking for comfort. I want to know what is will have to go through when she comes, I want to know if this is going to hurt her, if she will feel this pain. Many different things I guess, and many times my family and friends tell me everything is going to be just fine, but sometimes that's not good enough for me I need more confirmation. So I would tell you the same but you are probably hearing the same and feel the same as I do. So I want to share links and tidbits of how our appointments go and wish you the very best as we go through this tough time. This the the stuff that gets me through the day, and hopefully it will do the same for you :) Hugs. TTUS ~ lilmamaof3

[Alyssa1208]

They havnt told me anything other than he will more then likely live ppl live with 1 kidney all the time and he wont have any limitations such as sports and what not. He said the baby will be sent to a pediactric uroloigst when hes born and I have to been seen every 4 to 6 weeks to measure my fluid level. THATS IT! Im going to my regular Dr today but they dont really know much about this condition. I have to see the specialist at the hospital and thats not until June 15. The wait kills me!!!!!!!! I go everyday freaking out if he doesnt move alot. Its hell :(

[lilmamaof3]

I guess they say chances are rare for the other kidney to develop them ... but I think they wait until you are about 30 weeks to confirm that its only one. I will tell you a couple things they said they are watching for and why they have to keep an eye on her. Both her kidneys measure 18. As the kidneys grow cysts or retain fluid it could start to threaten heart and lung development. We have also been referred to a heart specialist, we have visited 2 times at this point. I know when they first found issues with her kidneys my appointments started every two weeks and now have went to every week. I think they might base it on how enlarged they are. And as he grows they will be able to tell you more and more. My doctors told me they took my file to board meeting and they as a group decide what to do .... so I think this condition is rare and many different measures can be taken based on how severe it is. Have they told you how big his kidneys are?

[Alyssa1208]

Hey! Thanks for responding!! I have no clue what to expect either. Although Im only being checked every 4-6 weeks..I wonder why they are checking you so often and not me! That kinds worries me!! I have so many questions to ask at my next appointment. When they first told me I was in shock so I had no idea what to even ask! Do you know what the chances are of it developing in the other kidney? Thats really my main concern! My dr. told me its VERY RARE they have to get surgery to remove the affected kidney when they are born. He said unless it starts developing the highblood pressure hormone they usually just leave it alone! Ill be looking foward to your update June 1st! I go in on Jne 15th

[lilmamaof3]

Hi Alyssa, I am currently 31 weeks and found out our baby girl has Multicystic Dysplastic Kidney Disease when I was 23 weeks along. I go to a special doctor now who does an ultrasound every tuesday to measure the growth of her kidneys as they seem to be getting larger and larger with each visit, as well as measuring her amniotic fluid. It was very scarey at first, then i think after so many tears and trying to stay off Google I slowly got a little bit better. But as you can see I still get curious about what information is out there. They have not really told me much either except for the fact her right kidney is still functioning and they will do everything possible to keep it healthy. Next tueday June first we go speak to the fetal urologist. He will be the one to talk to us about surgery or plan after she is born. That appt will answer alot of the questions I have as I just want to know what to expect .... at this time im clueless and just have been told she should make it, people live on one kidney all the time. Which is great news! Now whats our next steps in making sure she is ok? So Ill post you back on june 1st and let you know what the specialist says.