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Baby's kidney not functioning

TeamM678TeamM678 member
in January 2016 Moms
At our 20 week growth sono they told us they thought they saw cysts on the kidneys but they wanted us to come back in three weeks and we would see if anything changed. Well turns out that wasn't it at all.

In the most simple terms of what's going on is that his left kidney is not functioning. Based on the fluid inside and where it ends, (apparently there are three places it can get blocked from kidney to bladder) it was explained that they are not optimistic they can save it. So for now all they can do is monitor it and see if it changes. One possibility they mentioned is surgery in utero where they try to open the valve that takes urine from the kidney to the bladder on the left side. But depending on how things go if we can avoid that after he is born they will take a long needle and drain fluid to test it and based on that they either can save it and put a shunt in or will remove it completely. Likelihood is leaning toward it needing to be removed completely. Either way ultimately when he is born he will need to immediately need to be whisked away to the NICU to be seen by a team of drs.

So what it means for now is im going to be seen every three weeks for a sono so they can measure the fluid in the kidneys and around him and the dr will meet weekly with the NICU team and the neonatal kidney specialist to formulate a plan and help us make decisions along the way.

Fortunately his right kidney is working well and he has enough fluid around him from it. His bladder is also functioning fine & also good was they took extra looks at his heart and its functioning perfectly.

He should be okay with one kidney and be able to live a normal life without a lifetime of severe renal issues. But knowing he will be immediately NICU bound and need surgery as a new born is scary as fuck.

Baby number 3 and we have never had to deal with anything like this before.
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Re: Baby's kidney not functioning

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    jmathi0149jmathi0149 member
    Lurking from March 2016. While the thouggt of spending time in the NICU can be scary, it is good they caught it early!

    My husband was born with only one kidney and didn't even know until he went in for a completely unrelated issue in High School. He has lived a totally normal life with no issues.

    I wll be thinking of your family in the months to come!
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    ChrissyD1203ChrissyD1203 member
    Prayers for you and your family. My SIL had her kidney removed at 3 months old and my ex boyfriend at 5 years old. Other than a limit on contact sports and excess salt they both live perfectly normal lives!
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    mamakculbmamakculb member
    Prayers for you Momma, your baby, and your family. Everything seems 10x scarier when pregnant and dealing with new little ones. I know its not a kidney, but my sister was 6 weeks premature and had eye surgery a week later, to prevent her being blind in that eye. It was definitely hard for my parents then, but she's had normal (with glasses) vision all her life and it was such a blessing to have it all taken care of then. Praying for peace of mind for you and daddy, and for good reports on your next sonograms. Hugs!




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    JDBtwinmamaJDBtwinmama member
    I'm thinking of you and your little one and sending thoughts and prayers. It sounds like you have a good team of doctors working to help you! Keep on plugging and try to stay strong!
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    ellaxo1ellaxo1 member
    Thinking and sending good vibes your way!
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    blessedwtwinsblessedwtwins member
    Lurking from D15
    I just want to say how sorry I am about your little guy. You'll be in my thoughts.
    I know you're scared but you seem to be taking this remarkable well and with a great and strong attitude, he's lucky to have you as a mother.
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    enkbenkb member
    I'm so sorry you are having to deal with this, I'll be thinking good thoughts that it all turns out ok. I know the situation is not te same at all, but an additional positive anecdotal account, my mom had a kidney transplant 40 years ago and has lived with just this 1 kidney since with no issues. She even got pregnant and had me without problems.
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    SarahS06SarahS06 member
    Lurking from February 16 bmb. OP - I'm sorry you have to go through this - it sounds very stressful. Just wanted to share my brother was born with only one kidney and didn't know it until he was an adult and having a work-up for an unrelated concern. He's perfectly healthy. Best of luck to you and your family!
    BabyFruit Ticker
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    huntboyshuntboys member
    Prayers are going up! I know it's hard but trust in God and remain calm and humble ! He has the final say! I hate hearing stories like this , it just rips my heart to pieces but u will keep you in prayer :) I always trust in the lord and give my battles to him he's forever my doctor and he has the final say! Keep us posted we all are routing for you to have a healthy baby!
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    Jtsma10Jtsma10 member
    OP - With my second pregnancy, my unborn son was diagnosed with a Multi-Cystic Dysplastic Kidney at 27 weeks. He too had cysts like a bunch of grapes around his left kidney. It was the scariest thing I've had to deal with during a pregnancy. So of course I start reading about in on Google and freaking out even more. His right kidney was functioning and creating fluid to strengthen his lungs. (Keep drinking water mama, it helps!!!) My son, Patrick was born at 39w+6d and was 8lbs, 14 oz and 22 inches long, with a good set of lungs on him. He is now a happy and healthy 8 month old little boy. (He was also born with a cleft lip which was never found on all the ultrasounds we had). We go back next month for a 9 month check up on his kidney. It was shrinking the last time they checked at 3 months. But he will have testing done. A VUCG is most likely, it's to check for any re-flux from the kidney back to the bladder to make sure there is not urine sitting in there. Which causes an UTI. Thankfully with my son, everything is working properly, except for that left kidney. 

    My advice, keep drinking water. The more fluid the better since he's only using one kidney to create the amniotic fluid in there. Thank God that there is only cysts on one kidney. I've read stories about moms who's babies had cysts on both kidneys. When that happens, there's not enough fluid for them which means their lungs don't fully develop and most babies only live a few hours up to a day after birth. :( Your baby will be just fine with one kidney, my son is doing great. Also, find a great nephrologist and peds doctor, it will help the whole process after birth much easier. If you have more questions, I'll be happy to talk with you more! 

    Here is a picture of my son before his cleft lip surgery. :)
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