Multicystic kidney experiences? — The Bump
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Multicystic kidney experiences?

I am almost 34 weeks pregnant with a dd who has multicystic kidney disorder. One of her kidneys appeared healthy and the other one has many cysts but the doctors have told me not to worry since she could be fine with just the one kidney. At my ultrasound yesterday the tech mentioned that she might see a cyst on the healthy kidney now too... But she wasn't sure. Now I am starting to worry. Does anyone else have any experience or stories to share dealing with cystic kidneys? I am not sure what to expect when she is born.
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Re: Multicystic kidney experiences?

  • We have lots of bladder/kidney problems but that's not one.  I would familiarize yourself with the pediatric nephrologist you plan on seeing after.  Also, I'd give your current pedi a heads up, and see if they have any advice.  
    Good luck and please keep us updated.
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3

  • No experience with that, but i wanted to tell you that my DH is living with one kidney nowand has no issues. He donated his other one to his brother about five years ago. The one that was donated had several cysts in it, but the doctors werent concerned, they said it was quite common.

    BFP#2 2.5.11 (EDD 10.15.11) DS born 9.28.11

    BFP#4 8.27.13 (EDD 5.6.14) DD born 4.23.14


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  • I'm not a part of this board, but happened to see this topic on the main screen.  My son has a multicystic kidney and is just fine.  He won't be allowed play contact sports (which is great in my opinion) to protect the working kidney.  My husband also has a multicystic kidney as did his grandmother (some doctors claim this is a coincidence and it's not genetic).  The only way this would affect his health is if something happened to the working kidney, but many people live with only one kidney. 

    We had monthly ultrasounds when I was pregnant and then took him for one ultrasound after he was born.  They thought everything was fine at that point and told us to come back in one year.  After his one year appointment they were happy with everything and said there is no need to come back again.  If the kidney had grown instead of shrunk in the first year, they may have removed it, but I don't think that happens very often.

    Because of family history, we have an ultrasound at 16 weeks with all pregnancies now to check the kidneys.  My understanding is that a multicystic kidney will show by this point, so I wouldn't think you would find another one this late in your pregnancy.

    Don't be shocked if most medical professionals have no idea what this is or confuse it with polycystic kidneys.  Our pedi (and the other two we interviewed), OBs, and all ultrasound techs we have seen have never heard of this.  We did use it as a way to pick a pedi though.  The one we picked admitted she wasn't familiar with it and had done her research and was very familiar by the time our son was born.  One pedi insisted it was polycystic kidneys and told us a lot of incorrect information in our interview so we immediately decided not to use her.  The only people familiar with it have been my son's urologist (they didn't recommend a nephrologist, but I don't remember why), my MFM, and our genetic counselor.

    I hope everything goes well!
    It took 3 1/2 long years, but we finally got our little miracle!
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    Unassisted Pregnancy #2 - lost at 15w6d due to T21, severe heart defects, and fetal hydrops

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  • Thank you so much for sharing your story! It is reassuring. The doctors have not been giving us very much information, just a lot of let's wait and see what happens so it is nice to hear from someone who has experienced it
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  • I appreciate the post about the success story.  Most of what you get online is pretty terrifying for those of us dealing with a mulitcystic kidney.  I'm due in a few months and am scared to bits.  The OP is right, dr's don't give you much info besides "wait and see."  I'm trying to put together a website to help other mothers in my position gain access to good information and POSITIVE stories.  The lack of information and pressure of having something, anything wrong with the baby has scared my husband to the point he doesn't want to have anything to do with me or the baby and is on his way out the door.  If Dr's would just provide some sort of information besides either gloom and doom or wait and see, it would be so nice.  i pray the stress of his leaving and not knowing what is ahead for my baby girl doesn't mean preterm birth.  I don't want any other mothers or children to go through what I have.  I hope some of those with multicystic or any kidney disorders will be willing to tell their stories once I get the website established.
    Thank you and good luck.
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