Has anyone been pregnant with a baby that had renal agenesis?

Lindsay - posted on 03/25/2009 ( 7 moms have responded )

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At my 20 week visit and ultrasound, we went in to find out the gender and the doctor told me that I didnt have any amniotic fluid. He sent me to the specialist right then. I learned that day that my baby has renal agenesis which means no kidneys. Baby also has no bladder and the lungs have never developed. So this baby is incompatible with life outside the womb. I just curious if anyone else has been through this or heard anything about it?

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~Jennifer - posted on 03/26/2009

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I am SO sorry that this is happening to you & your family.



When I was told the same thing about my daughter 14 years ago, to be honest, I had neevr even heard of something like that happening before.  I was at nearly 6 months when I found out.   They called it "Potter's Syndrome" and told me that it was very uncommon (mine was not genetic either).  I went into labor a month early and my daughter, sadly, did not survive.  At least I had some time to prepare, but that didn't make it any easier.



I found a website a while back that helped me understand what had happened. 



http://www.potterssyndrome.org/



Maybe it could help you too.



Much love,



~Jenn~

Jennine - posted on 03/25/2009

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Omg. Are you ok? We were told at 20 weeks that our oldest had one kidney but no renal arteries so they weren't sure that she would live, but we were lucky and it turned out that she had both kidneys with arteries that hadn't separated. A completly random problem that occured in the first trimester. But I hope that you and your family will be able to cope with this diagnosis. Are they going to terminate the pregnancy or let you go to full term?

Is it a genetic problem? Could it happen again?

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Alissa - posted on 10/28/2013

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I am 6months pregnant I didn't find out
My baby had renal agenesis until I was
5months as well... It's heart breaking its
Scary... Sometimes I feel hopeless, I thought Mabey I had or hadn't been doing something right ... This is my first baby & I really wish there was some type of cure... But doctors told me there wasn't.. But what does give me hope is he/she moving,kicking,punching around going on in there! Just cherish the moment you have with your baby in the womb while you can .... It's the most sadest thing to ever have to go through... Your not alone.


Hope I made sense.. Lol I'm a bit tired...

Melissa - posted on 07/15/2013

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The same thing happened to us we lost our baby girl at 20 week because she had no kidneys we only found out at 20 week scan . It was my first baby and it broke my heart so much . Never loved any one as much . I gave birth to my beautiful baby mel on Boxing Day 20011 she had the most beautiful face. I am now pregnant again and I'm so scared that it will happen again. I've read so much but this is the first time that some one had the same I hope you well xxx

Christina - posted on 03/26/2009

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I also had a child with Potters Syndrome, I had no warning before hand and it was the most horrible experience anyone can go through. It has been 18 years and I still dont fully understand it. My heart goes out to you and your family.

Lindsay - posted on 03/26/2009

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I am doing ok, thank you for asking. The outcome is that I could terminate (abort), carry to full term or an early induction after 24 weeks. I am doing an early induction. It is a genetic conditon but we have been tested (our kidneys) and it is not genetic for us. And the odds that it would happen again are slim to none. I do have a 10 year old and a 16 month old so they have helped me tremendously (they dont know this) and I have a great husband and the best family to help me also. But I had a miscarriage in Aug 08 and then found out pregnant with this baby, now learned in Feb 09 of this poor baby and the condition so I am going to wait a year before we try again. :(

Lynda - posted on 03/25/2009

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I've never heard of that, but it is awful. What is the outcome of these findings??

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