Potters Syndrome Aka Bilateral Renal Agenesis

12 Replies
mcatherine - March 21

I lost my last child in 2003 at 20 weeks due to this fatal condition (absense of both kidneys and bladder) and have been told it was a "fluke", it was "like being struck by lightening", and I would "win the lottery" before this happened to me again. I am currently 16 weeks into this pregnancy and am looking for someone that may have experienced this or a similar situation before and have gone on to have healthy children. Thanks -

 

cmarie - March 22

mcatherine- So sorry to hear abotu your previous loss. The good news is that your pregnant again. I lost my little girl due to a cyctic hygroma, turns out she had Turner's Syndrome. I had to deliver her at 27 weeks. I am trying to conceive this month so I will keep you posted. But I got the same from my doctor, its a fluke thing and wont happen again. We just have to hold on to that.

 

mcatherine - March 22

Thanks so much - I am sorry for your loss as well. Good luck to you this month. Hopefully I can share in your good news!

 

cmarie - March 22

Thank you! I am hoping and praying like crazy :) I will most definately keep you posted. Do you mind me asking how long you waited before trying again after your loss? The reason I ask is it will be a year for me June 1st. A part of me feels ready another is still scared.

 

mcatherine - March 22

I don't mind at all. We waited 2 full years and then 3 months of trying. I admit, I was terrified to try again and once I was pregnant - I was scared to be pregnant. I know at first there was a bit of a detachment between me and this baby, but alot of it melted away with the first movements. Still, we are scared to think to far in advance - not many maternity clothes, no baby clothes, no toys, no bedding, etc. And we have sleepless nights before every ultrasound ( I have one every two weeks) I find I am jealous when I hear people excited to guess whether they are having a boy or girl when all I pray for are two kidneys. But at the end of each day, I'm glad we decided to try again. I'm thankful for my swollen belly (not so much for the big b___bs, though) and for every movement I feel. I don't know if the being scared part will ever go away or even get easier, but I know if even a part of you feels ready - then you are.

 

Tara S - March 23

Hi ladies, Sorry for your losses. I lost a baby last November because of Turners Syndrome cystic Hygroma and fetal Hydrops. The experience was really hard . My husband and I are thinking of trying again and also scared and more aware of things that can go wrong. We named our sweet little baby girl Treya. Mcatherine, congrats on your pregnancy and I wish you all the best. cmarie,my husband and i really want to try this month as well< but i dont even know if my body is back to normal and ovulating> i think were just going to try but not record temps or look for signs> i feel if its going to happen this month then it will> lots of prayers for all of us and healthy future babies

 

Tara S - March 23

I forgot to add that I had two healthy babies and wonderful pregnancies( A girl and a boy before losing Treya). I did have a miscarriage before I got pregnant with Treya but it was unrelated to the syndrome Treya had..

 

cmarie - March 27

Tara S. - Bless your heart about Treya. We named our little girl Makenzie. It is hard trying to build yourself up to even try again. My worst fear is that this may happen again, despite the less than 1% odds. I started to keep track of my ms in Dec.so we could start trying in Jan. Well ever since I had Makenzie I guess my body wasnt ready for anythign else so I ovulated every 42-48 days. The doctor put me on clomid this month to get them reg. so we shall see. I went in on Thurs and he said I produced an egg over 2cm and will ovulate in the next 24-48 hours. So now I guess is the waiting game. It is very encouraging to hear you have 2 other little ones. Makenzie was my first, and although I am told we are genetically clear, we are still nervous. Good luck to you and yours this month!! Hopefully we will both have good news soon TaraS.

 

Tara S - March 28

cmarie, my body is really strange since I lost our baby girl, I really don't think Im ovulating this month. I guess Ill just keep trying . I feel very blessed to have the two I have already, but it was hard trying to explain to our children what happened to the sister they wanted so bad. Im praying that we can get those positive pregnancy tests soon.

 

cmarie - March 29

Well Tara S. this may just be our month. Fingers are crossed that it is! Please keep and touch we can hopefully share our great stories... or we can support one another through this until it does happen.

 

mcatherine - March 30

cmarie and Tara - I read up on Turner's and I am so sorry for you both. It seems to hurt so much more when no explanation can be offered as to why something so terrible has happened to your child. I swear the word "fluke" has become the other "f" word around my home. After I lost Christian, my body seemed to shut down on me. My periods seemed to happen less frequently every month until one day they simply stopped. I had several cysts on my ovaries, but the blood test revealed that I did not suffer from PCOS, I had laparoscopy surgery done in November, but the doctor could find nothing wrong. My husband and I decided to try Clomid, but we wanted to wait until after the holidays so we would have clear minds. On January 1st, we were supposed to start Provera to bring on my period so we could begin the first Chlomid cycle. My doctor asked me to take a pregnancy test prior since Provera can cause birth defects - well, ladies - there were two lines. The one month we didn't try was the month I concieved. There is so much promise for you both!! I am currently in my 17th week. The doctors have found two kidneys and a bladder (and t______es!!), but there is a cyst on the right kidney. Currently, we are waiting to see the perinatologist on April 10th to find out if this is the beginning of kidney disease or, gulp, another fluke condition. My best wishes to you and I will be hoping for double lines for both of you -

 

cmarie - April 3

mcatherine- congrats, its a boy!! And to think you didnt even have to take clomid. I hope everythign goes well for you at the perinatologist. My thoughts are with you. Best wishes.

 

Tara S - April 3

mcatherine, congrats on a boy. Ill be praying for you and your little one, I sure hope hope everything goes well. You do give me hope that someday i may have another, for now hubby and I are busy trying, but if it doesent happen this month then I won't be to upset, it just wasent the right time. Best wishes

 

ADD A COMMENT:


You must log in to reply.

Are you New to the forum? Sign Up Here! Already a member? Please login below.

Forgot your password?
Need Help?
New to the forum?

Sign Up Here!


Already a member?
Please login below.





Forgot your password?
Need Help?