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Risa - September 30th, 2006 7:49 AM

Hi everyone,
I decided to start a new thread in case there was anyone else who might have a similar story to share. yesterday we went for our big ultrasound where they do many measurements and check for abnormalities. But before I get to that, we did find out the sex of the twins.....2 boys!! I'm going to be surrounded by football and video games, but it's okay as long as they are healthy. I am just praying that they will be born healthy.

The U/S showed one baby was perfectly normal, all the organs looked good and developing just fine. The other baby showed an abnormality in one of his kidneys. Normal kidneys store a small amount of urine before releasing it down the tube to the bladder. My baby had a large amount of urine stored in the kidney and the bladder itself was abnormally large, which means there is something partially blocking the urine. His other kidney was fine, so that tells us that there is only a partial blockage.

This information means either the baby will be born with a kidney disorder, but also raises the chances that this is a sign of down syndrome. This is what I am most frightened about. For my age, 28, and the fact that this kidney abnormality is showing means there is a 1/500 chance that my baby might be born with down syndrome. The only sure way to tell is to do an amnio, which puts both babies at risk. But we don't even want to do an amnio, because we would never terminate one or both babies. I could never be able to live with myself...

I just don't understand, down sydrome does not run in either of our family and I expected it to occur for women over 40, I'm only 28! Dh discreetly threw away the paper that the doctor gave us with the true medical term for the kidney disorder, mostly because it had all the information about down sydrome too. He says I need to think positive, because if I worry then it will effect the babies more. He is Mr. Positive anyway, pointing out that there were no other signs of down sydrome and that there is a 1/3 chance that the kidney problem can resolve on its own before the baby is even born.

Has anyone else received any unexpected news at their ultrasound and later found out everything is okay? I know I shouldn't think this way, but I can't help but wonder if it had anything to do with the IVF and not getting pregnant naturally. Couldn't sleep much last night and keep praying everything will be okay.

Risa

liz - October 3rd, 2006 8:22 AM

Risa -

I just saw you post and wanted to tell you I am thinking about you and praying for you and your little boys.

Congrats on the boys, you are going to have a lot of testosterome in your life. lol

I can understand your desire to not have an amnio. My dh and I feel the same way about many of the tests they suggested. There is no way that I would terminate my pregnancy so there is not need for us to put ourselves through testing.

I agree with your dh that you need t to keep postive! You need to keep strong for your little boys. I can appreciate that it is difficult for your right now and I can honestly say I don't know how I would be in your shoes.

I feel it is very postive that he does not have any other signs of downs, that is very good news. I personally have neverheard of anyone as young as you having a child with downs, usually it is in older women (as you already stated). Did you and your husband have genetic counseling by any chance throughout your journey.

You are in my thoughts and prayers.
Liz

Risa - October 3rd, 2006 8:01 PM

Thank you Liz for your support. I am trying to be really positive, sharing the fact that we are having boys with everyone but nothing about the kidney abnormality. I feel if I don't mention it and stay happy and perky that everything will be okay. No, we have not had any genetic counseling because we did not think it was necessary since there are no genetic disorders in either of our families, not even distant relatives. Regardless of what the outcome, I still feel very blessed to be pregnant and to have these two boys. We wanted children for so long and I just want the best for them, I don't want either one to have to suffer with health problems. Thanks again for your support and I'm hanging in there.

Risa

liz - October 4th, 2006 9:50 AM

Risa -

I think you have a wonderful attitude. I agree with you that thinking postive and looking for the postive can work wonders for you. I know it is probably nerve wracking for you and your dh and I am sure that if I was in your shoes I would be going crazy with the what ifs, but in reality there is nothing that we can do. I believe that what is meant to be will be, what God wants for me will be and I have to deal with it no matter what it is.

I know that doctors always seem to give us the worst case senerios and they must, however sometimes it would be nice to not have to know so much. You said their is a chance that this problem could correct itself, that would be a true blessing and if it does not correct itself I am positive that you and dh will get through this. The journey may be bumpy and it may not always be filled with sunshine (we all know this already from the ttc journey) but you will get through it!

You are blessed to have 2 little bundles of joy growing happily inside of you and no matter what they will are a gift and a blessing.

So, have you decided on any names yet?

Take care, Risa and if you need to talk you know I am always here.

Liz

Julie - Hoping - October 8th, 2006 10:29 PM

Hi Risa
First a HUGE congratulations on your two baby boys! I'm also having a boy! (Actually not including ladies on this site) I know 9 pregnant ladies and 7/9 are having boys! Too bad we don't live closer for playdates :-) Have you decided on names yet? We really like Kyle but I find it strange to call him Kyle instead of "the baby." I guess that's still just residual worry in me. My parents had 2 girls and now will have 3 grandsons!

I'm sorry you got some scary news and I'm with you 100% about not doing the additional testing. My Dr. was very clear all of the down syndrome screening is a risk assessment and an estimate. 1 in 500 could easily be 1 in 750 and he had also said he doesn't recommend amnio unless your risk assessment is less than 1 in 200. You said he has no other sign of down syndrome - keep focus on that!

Will the baby definately be born with a kidney disorderor is there just a chance he might at this point? Any chance it may grow and mature out of it? People can be fine and function on one kidney I had thought - organ donors can donate kidneys and be just fine and you said your little one only has a problem in one kidney correct?

I'm sorry you have this stress - after everything you've been through to get here you deserve clear sailing. You should just continue to be happy and perky and I'm sure your sons will be happy and healthy when they're born! Positive thoughts!

shaz - October 10th, 2006 6:33 AM

Risa,

Congratulations on your two boys. Im sure you will have a very busy household in the future.....

I have two girls 6 and a half and 9 months both IVF babies....With my first daughter (Billie) my 16 week blood results came back with an increased risk for Downs.....It came as such a shock to me I just couldnt believe it. I think the odds were something like 1/300. Our doc also suggested amnio of which we declined as like you I would never have done anything to jepordise the safety of my baby. I also would not have acted on it if it turned out that she was downs. I spent a good few months worried and always had this horrible feeling of dread. At about 6 months I decided that I could not change anything and if my baby was going to be downs then I had to start thinking happy positive thoughts as this child would need me even more....Billie was born at 35 weeks via c-section perfectly healthy......

On to number two. 12 week ultrasound and maternal serum test came back HIGH risk down syndrome.....I just thought oh no, not again. This time however the risk was quite high......1/50.....I was devastated and went through the pregnancy again not knowing if my baby was going to be ok......Again Mackenzie was born at 38 weeks via c-section perfectly healthy.......I am blessed to have my two healthy happy girls and thank god every day for them....

On the flip side, I have had a friend who had no indication that there was anything wrong with her baby during pregnancy and delivered a Downs baby!!!!!!!!!!

I hope that all goes well with the rest of your pregnancy and that your boys are very healthy....

Shaz

Risa - October 10th, 2006 5:48 PM

Thank you all for your positive thoughts. I totally agree with Shaz, if one of my boys does have downs or even a kidney disorder then I need to be fully there for them, positive and strong. But I am still praying that he will be okay and yes the 1/500 odds is a large number and there were no other signs of downs.

Julie, I thought the same thing regarding the kidney. I do believe that a person can survive with only one kidney, but the abnormality also showed up below the kidney with an enlarged bladder. This could mean there is something wrong with this area too, but the doc said surgery could easily fix this is necessary. But like I said before, Dh and I wanted a family for so long and in the end that is exactly what we'll have.

thank you so much Shaz for sharing your experience with me and I'll keep you in mind whenever I start to have doubts. Did you ever share the possibility of having a baby with Downs to anyone besides dH? I was just wondering becuase I feel like this is so huge and like we are hiding it from even our parents. And for your friend, that is unbelievable that none of the tests showed a possiblity of downs.

thanks again and I'll be thinking positive thoughts.

shaz - October 12th, 2006 10:21 PM

Hi Risa

I never did share with anybody about the testing and the fact that I was potentially carrying a Downs baby. There were a few reasons for this.........I didnt want anybody focusing on it, I didnt want to have to see pity and sorrow in their eyes everytime I saw them. That would have made it very hard for me to stay positive. My husband and I used to talk about it a little bit but on the whole we really tried to use positive thought and prayed that everything would be ok. I also didnt want people looking at Billie or Mackenzie when they were born and for any length of time afterwards looking for signs......I guess it was hard enough to deal with between DH and I and I just didnt want to have to discuss it with anyone else.

In the latter stages of both pregnancies it didnt become such a worry for me.....I had prayed and thought and envisioned both children were healthy but also thought that if I did have a Downs baby then it would be for a reason. I believe that we are only dealt what we can handle in life.....I tried to start to look at it as a positive, that I was going to be entrusted with a beautifull little soul that needed MY extra love and care....

I guess it's what you think you need to get you through and if that means telling a few people or even your parents then do so.....Dont forget you have all of us to help you through also.

Take Care

Shaz

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