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Reassurance, Throughts, Prayers... I'll take whatever you've got. (xposted)


Forum: Pregnancy and Motherhood After Loss

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  #1  
May 27th, 2010, 06:23 AM
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Not so great news today.

Baby L has a soft marker for Trisomy 18. A choroid plexus cyst in the brain. My risk of Trisomy 18 (usually incompatible with life) pre-ultrasound was 1/3054. Now that we have this soft marker it is 1/337. I know that is still a small risk but it is scary and heartbreaking. I had blood drawn today to hopefully decrease our risk again. I don't really know what we will do with the blood work. If the result comes back good for us then we will not take the chance on an amnio. What I don't know whether we will risk the amnio if we get a higher risk from the blood work. With my past history of miscarriage we will have to discuss the risks vs reward of it.

I didn't really have a lot of time to decide on the blood work today because it had to be done before 20 weeks gestation and the baby was measuring 19 weeks 6 days yesterday (so basically I HAD to do it today if I was going to do it). If we had more time to talk about it and discuss it with my doctor we may not have even done the blood work. I know the tests are just more screening tests and not actual diagnostic tests so all the blood work will give me is another risk number.

However, after we got back from having my blood drawn I got a call from my doctors office (the receptionist) telling me that I needed repeat anatomy scan in 4 weeks. My doctor did not mention it to me when he called me so I assume he either did some research or just decided it was the best next step. So I go back in 4 weeks - hopefully after good blood results. I do see my doctor in 2 weeks so I am sure we will talk about what it all means a little more. As far as I know we only have the one marker which is a good sign.

I can't help but wonder "why me"? Haven't we been dealt enough rotten cards in the past 18 months? Isn't 4 losses enough for me to have to deal with? I am sure I will spend the next 4 weeks wondering all of this which means it is another 4 weeks that I don't get to be the excited pregnant woman that I long to be. Another 4 weeks where loss and heartache are the primary topics I think about. Anyway... I have rambled enough.

So that is what is going on with me and Baby L right now.
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  #2  
May 27th, 2010, 06:46 AM
katiegirl's Avatar Mega Super Mommy
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Michelle - was the cyst the only marker they found? If so that is good and hopefully when you do a repeat scan in four week it will have decreased in size or disappeared all together.
When I had my 19 week scan for Alexa they found two large choroid plexus cysts, one on each side of her brain. I did the bloodwork the same day as well and the results were comforting because the odds were in my favor, I don't remember what they were but it was better than my age odds. Because of this I declined the amnio.
They had me come back at I believe 32 weeks for a follow up u/s and they were both gone. Bonus is you will get to see your adorable baby again soon.
If you have any questions or just need someone to talk to who has been through exactly what is going on please just let me know.
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  #3  
May 27th, 2010, 07:22 AM
IAMommy's Avatar Platinum Supermommy
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Michelle, when I was pg with Cecil, our 20 week u/s showed a choroid plexus cyst on his brain also. I was at a high risk OB office, and the Dr. said that since there were no other markers present, the risk of the Cyst meaning something is very slim. They said that they see cysts on the brain at 20 weeks more and more these days since the equipment for u/s has improved over the years. Still, since the cysts when seen with other markers can be linked to Trisomy18, they offer repeat u/s and bloodwork.

Even after I heard her reassuring words, I was still frightened, and I googled like mad as soon as I got home, and I discovered that she was correct - Since I did not have any other markers, the chances of having Trisomy18 were VERY slim! at my next u/s the cysts were gone and everything was OK.

Hugs to you.....it is really hard to hear that there is a chance something could go wrong, especially after a loss....I hope the next 4 weeks go by quickly for you and your next u/s shows that everything is OK.
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  #4  
May 27th, 2010, 08:07 AM
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Thanks Ladies. As far as I know it was the only marker. But the conversation with the doctor was really quick (only about 2 mins). And the entire ultrasound is very quick as well so from what I could tell there were no areas of concern. I have an appointment with my doctor next week so I am sure we will talk more about what this all means.

I really hope the next 4 weeks go by quickly but I fear they will be a very slow moving 4 weeks.
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  #5  
May 27th, 2010, 08:18 AM
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I have no experience with any of this....I just wanted to send you tons of
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  #6  
May 27th, 2010, 08:28 AM
martilynne's Avatar Platinum Supermommy
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Very rarely does a baby with only one soft maker have trisomy 18. Here is a quote from the trisomy 18 foundation page

"Studies have shown that most (but not all) babies with Trisomy 18 show some abnormalities during ultrasound. Other studies have shown that a single marker found on ultrasound is usually not a good indicator of a chromosomal condition. In other words, if only one marker is found during a level 2 ultrasound, the odds are very high that the baby is healthy."


I would've killed for odds of 1:337. I was given 1:<5 chance that my baby was going to have trisomy 13 or 18. That was scary enough odds for me to go ahead and have further testing. I was 13w6d when I saw a peri so I was still able to get a CVS. CVS is suppose to have a higher risk of m/c and be more painful. I'm not going to lie, it hurt BAD, I even fainted afterwards. It didn't cause me to miscarry and would've been more than worth it for peace of mind. Unfortunately the results weren't good, our baby girl had T18.

Incase you're interested the best website I found about it is Trisomy 18 Foundation: Home The odds that your baby has T18 is very very low.
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  #7  
May 27th, 2010, 09:34 AM
LisaB's Avatar Mom to twins + 1
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The markers are so common - that's why I hate screening tests. They cause unnecessary worry as they simply calculate your risk factor, and ANY risk makes you worry. If you think an amnio will alleviate your fears, do it! It is definitive, and the chances of miscarriage are extremely low after 15-16 weeks. You carry a much higher risk of miscarrying by driving in your car. Seriously!

I will say that after my amnio, my fears were put to rest. I had some mild cramping a couple of days later, but that is totally normal. I absolutely had to have an amnio - after losing 6 children, I simply had to know if "baby surprise" had any issues, especially at my age. I'm very glad I did it as now I have several less things to worry about!
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  #8  
May 27th, 2010, 10:55 AM
*MomofO&Nat*'s Avatar Kelly, Massachusetts Mama
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Michelle,
First of all, I am SO so sorry you are going through this. We had the same experience at 18 weeks, the cyst plus they found a heart spot so we are at risk for Down's AND T 18 based on the two soft markers. I cried and cried, but after several long talks with my OB about the risk being so low for either syndrome based on these two markers, I have relaxed a bit. The risk for T 18 for us was slim, but the risk of m/c from amnio was 1/200 so I didn't want to risk it personally. We go for a repeat u/s on 6/30 to see if the markers are gone. I hope it will give me peace of mind. I wanted to tell you also that I found a GREAT website called choroidplexuscyst.org that has tons and tons of the same exact stories and most of the moms check back after the babies are born, reporting that the baby was fine. Some of them still had the cyst at the 28 or 30 wk u/s and still had a perfectly normal baby. It gave me a lot of hope and I hope it will help you too! I also found a website written by an OB where he sounds off about the soft markers, saying he is sick of telling perfectly healthy pregnant woman on average 5x a day that their babies may be at risk when it is so slim a chance. He was calling for the removal of the cysts and heart spots as markers at all. I agree, neither of us should have to go through after a m/c, but if it is the only marker you are probably in really good shape for things to be ok. HUGS!!!
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  #9  
May 27th, 2010, 11:22 AM
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HUGS Michelle... You know where my mind was this time last week... as you Talked me through this a week ago.... Like the other ladies have said here and to me over the last week... they are soft markers.. and you will hear some many great stories.. that everyone babies were ok!!! While it helps.. I know it is sitting in the back of your mind.. like me... But you have to think and stay positive... Remember 5 years.. Disney, and than the Arranged Marriages. We got big plans for these babies.. LOL
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  #10  
May 27th, 2010, 12:09 PM
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I had a 1:36 chance of Norah having Trisomy 18, we didn't do the Amnio but just seen how things went with U/S and she is a prefectly healthy soon to be 8 month old. I want to give you hope that everything will be fine. Lots of prayers for you.
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  #11  
May 27th, 2010, 12:48 PM
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Big big big big hugs Michelle. I'm so sorry to read this post... because even though I am 100% hope and positivity for Baby L, I am so sorry you have to go through this scare. You have been through MORE than anyone should have to endure, and I hate hate hate that you have to have news like this. I'm keeping you and the little one and DH in my thoughts for a great scan in 4 weeks that clears up this spot. HUGS.
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  #12  
May 27th, 2010, 03:45 PM
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Hugs Michelle. You have gotten a lot of reassuring advice from these ladies. I just wanted to say I'm thinking of you guys too and hoping for the best. You are a strong woman!
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  #13  
May 27th, 2010, 03:47 PM
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Thanks ladies. We won't know more until at least the blood work comes back so I am going to try and keep my mind off of it for a while (hahaha yea right... how am I trying to convince). Things will be ok - it was just a shock to have to deal with so much more scary stuff when I was finally starting to feel good about this pregnancy.
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  #14  
May 27th, 2010, 06:43 PM
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Michelle, your odds of your baby having Trisomy 18 are a mere 0.0029%. That's a 99.997% chance that everything is fine! I think that the odds are very much in your favour. Please KUP and you know that we will send you positive thoughts.

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  #15  
May 27th, 2010, 07:37 PM
baby4me?'s Avatar Mega Super Mommy
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I don't have any knowledge to share. Just wanted to say sorry that you have to deal with this! I agree that 4 losses in itself is enough without something else to worry about!
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  #16  
May 27th, 2010, 08:24 PM
Gaby&Emmy'sMama's Avatar aka NZ-Emma
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thinking of you hun ((hugs)) I hope everything turns out okay.. i know a few women in my DDC had soft markers for various trisomy's & chromosomal defects, and they all turned out to be fine
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  #17  
May 27th, 2010, 08:34 PM
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Sending you T&P's that the 4 weeks flys by and you get great news at your u/s!! ((HUGS))
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  #18  
May 27th, 2010, 09:33 PM
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Thinking of you and praying everything is ok.
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  #19  
May 28th, 2010, 09:17 AM
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I'm so sorry that you are having to deal with more worry Thinking of you and baby L.

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  #20  
May 28th, 2010, 01:08 PM
Trish36's Avatar Mom of 4
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Just wanted to send you tons of HUGS!!!!! Hopefully your bloodwork will come back normal and you won't have to stress out over getting an amnio!
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