Our 20 wk u/s found 2 choroid plexus cysts - anyone BTDT? (LONG)

[firstbaby]

We had a really emotional day Thursday - we went for our 20 wk u/s and the radiologist explained that the baby has two choroid plexus cysts. Alone, this is not an indicator of Trisomy 18, but if there were other conditions/things seen he would be concerned. He spent a lot of time looking at other things with the baby and the cysts were all that he could note on his report (he looked for clenched fists, etc but the baby's hands were wide open, etc). I talked with my Dr's office yesterday and they reviewed the radiology report and said that they will repeat the u/s in 6 weeks and there is a big chance that the cysts will be gone by then. However, if we choose to, we can do amnio. We did not do the AFP or other prenatal testing.

I am having a really hard time with this. Rationally, I know that the cysts in themselves are not indicators. I also know that at 31 and pretty healthy with no family history, my risk factors are pretty small. This is the rational thinking. That part of me tells me not to do the amnio because statistically things will probably work out. And, if I did the amnio and we were affected by the risks that go w/ amnio, I would be devestated. But, I would love to hear your viewpoints on going through with the amnio or wait for a follow up u/s, etc. Have any of you had these show up on an u/s? How did things work out?

Thanks in advance for all of your replies. I know DH is having a hard time as well and I think we're putting on encouraging faces for each other to get through this.

As a small, unimportant side note we did not find out the sex. We did have them put it in a sealed envelope and the first night I really wanted to open it after the concerns the doctor noted. But, since then I have realized it doesn't matter and I just want to focus on praying for a completely healthy baby! :)

[nd93]

I had a friend who experienced this - cysts but no other signs. Her baby was fine. I hope for the same for you.

[bcky2]

big (((hugs))) to you and your dh. i have not btdt but as for the amnio, if it is something that you are not comfortable with i would not do it. it is a hard decision for you and your dh to make and whatever you chose to do will be the right choice. i will keep you in my thoughts. sorry that you have to go through this :(

[SeekerMage]

(((hugs))) to you mama. I cannot imagine what you are going through. We go to our 20 week ultrasound next week and I never thought that such things could come up. We always expect everything to be ok...and more then likely everything will be. Thats the one bad thing about technology, it gives us too much information at times. I hope that the next ultrasound shows you everything you are hoping for. Im sure with all the good prayers around here you will have one healthy happy baby. Hang in there mama...everything will work out in the end :)

[jenjenfirenjen]

Big hugs to you. I'm sure this is a very scary time for you. I don't have any info or advice to offer but I was wondering...can you wait to have to ultrasound in 6 wks and then if things still look questionable, decide on the amnio then? I'll be thinking of you and praying that everything works out well.

[billysmommy]

((((HUGS)))) to you and your DH. We have just been going through something similar. We did the quad screen and it came back with elevated risks for trisomy 18. We got the results 12/23. We went and had an extensive US done on 12/27 with the option to have an amnio done the same day if we chose. We first met with the genetic counselor who explained everything in more detail to us, she was great. During the ultrasound they found one choroid plexus cyst. Because of this and the results of the quad screen we decided to go ahead with the amnio, we both felt we needed to know just what we are facing. I just got the results back yesterday and everything looks great. The past 2 weeks have been 2 of the hardest we have had. I was very anxious about the amnio and felt the same way as you - I would be devastated if anything happened as a result of doing it but I am so happy we went ahead with it. I don't like needles at all and was very nervous going into the amnio but it was over in about 30 seconds and honestly the Rhogam shot hurt more. Please feel free to PM if you have any questions about anything. I haven't been on the boards alot lately so don't know if I will see a reply here.

[Saartje]

I don't have any BTDT experience, and thus no advice to offer. But I do want to offer you whatever support I can give; I certainly imagine this uncertainty must be rough. All I can say is, once you've made your decision (amnio/no amnio), don't second-guess yourself. Assume that your decision is the best one you could make, no matter what happens afterwards.

[searchdog]

I HAVE been there and done that. Your post reads exactly how things went with my DD's ultrasound at 20 weeks. Just like you we had no other symptoms beyond the cysts, hands were open etc. I was devastated just like you and I cried and I cried and I cried some more. I couldn't buy a single baby thing for the whole 6 weeks that we had to wait, and I really kept talking about the baby to a minimum. I wouldn't let DH do anything in the nursery etc until we knew for sure that everything was going to work out ok. I can tell you that I know have a healthy 19 month old girl.

I know it is rough on you and your DH, it was hard on both myself and my DH and we chose not to really tell anyone else in our family because we didn't want to unneccesarily alarm anyone. If you want to talk to me feel free to send me a message and I will get back with you.

Hugs mama!!!

[Hippoharbor]

When I was reading this post of yours, I felt so sad for you and your husband; but then I got to the part where you said that you had an amnio and that everything looked okay. I just wanted to say that I am so happy that you got these good test results.

MIchelle

[buddyleebaby]

forgivr the lowercase, typing while nursing.

i had a somewhat similar experience at our 20 week us. They found a "white spot" on the baby's heart (forget the technical term) that was considered to be a "soft" marker for Down's. The Doctor very carefully examined everywhere else where they might find markers and was satisfied that everything else was fine. She said we could do a repeat us in a few weeks and the spot might be gone altogether. She said we could do an amnio but she didn't think it necessary.
She said we should consider this a reassuring visit.
Yeah right!
I cried for three days, playing the "what if" game. I imagined not Down's but a rare heart condition. I was so worried for my baby.
Then I spoke to my regular Docor, and he reassured me. He said if there was ANYTHING at all to worry about, they would be worrying. They would have no reason to try and downplay anything. He said the other Doctor probably wouldn't have even mentioned it but for the fact that she had to write it down.
Like you, we were not finding out the sex, we had not had any of the pre-screening done, etc.
My dd today is a healthy, thriving, 7 month old, with no sign of any medical conditions.
I know it's hard, but if the Doctor says don't worry- DON'T WORRY. You'll drive yourself crazy.
(Hugs). I know this is a difficult time.

[emmaandgeorge]

I have a friend who just went through this, and at her 26 week ultrasound, the cysts were gone. When they do the 20 week ultrasound, they look at 6 different markers that are present in the Trisomy disorders. Statistically, if you only have one positive marker, the chances are VERY low that anything is wrong. Theoretically, you would need more than one -- or even two -- markers to have a problem. Did you have a quad screen or a nuchal fold, as the results of these might help to make your decision about the amnio. While there is a risk with Amnio, you also need to evaluate how much stress you will be under for the next 6 weeks and how much this could effect the growth of your baby. With my first baby, my quad screen came back with a 1:35 ratio, and I went for the amnio with no problems as I knew I could not spend the next few months wondering. She ended up having one of the markers positive on the 20 week ultrasound, and I was glad that I had the amnio. With my third, his early growth was lagging (also a sign of a genetic abnormality), but I had the nuchal fold test done at 12 weeks and all look good so I skipped the amnio (despite being 39). I really think that the prayers of this group as well as my friends and family helped William become the healthy baby he is today.

Anyway, chances are that all will be fine, but you need to do what will make you feel the best and help you get through the next 6 weeks. I send out prayers to you and your baby and hope that it turns out for the best.

Betsy

[newnana]

Big hugs to you!!! This is long and not well put together. It's the first time I've typed this and I'm sorry if it's unclear.

BTDT. Here's our story. Miscarried with pregnancy #1. Devastated beyond belief. Luckily, it seems my DH can look at me sideways and I get PG (thank goodness we were so careful before we figured that out and were ready).

So I was already on pins and needles with PG #2. You know, afraid to get too excited about it, hormones, fear, excitement, the usual stuff. Then we go in for the US at 20 weeks. We were terribly excited that we had made it this far. I have a medical background and could tell at first glance we were having a girl. I welled up with tears and looked at DH not wanting to spoil it.

Then the US tech just got quite and took a bunch of head shots. Nervous, but maybe that's normal since we've not made it this far and I don't have a lot of prenatal experience. Then the doctor has us go sit and wait in her office. Since we'd only come up with boy names until this time for no particular reason, we took this opportunity and landed on what we now call our DD, Emily. Starting to get really excited about the pregnancy and our baby girl.

Then our wonderful doc walks in and tells us our DD has bilateral choroid plexus cysts and gives us the deminsions. Both were over .5 cm. She then explains that there might be a small link to Trisomy 18 and that we should have another, more detailed US in 6 weeks (felt like an insanely long time to wait). She said that they often disappear on their own, that she has seen a ton of these and has NEVER delivered a baby with T18. Well. I don't want to be the first. She said to go home, talk about further tests like the amnio, and relax. Ha!

Oh yeah, we did not have the AFP or other prenatal testing. The other kicker with this is that I was born with a benign brain tumor that wasn't discovered until I was almost 2. Though benign and no symptoms, it had been growing since birth. Scary stuff and all I could think about. Relax? Right.

Thank goodness for the internet!! Within seconds of getting home, my DH and I each went to our separate computers to find helpful websites. We would reconvene with any useful info as soon as it was available. That took about 2 minutes. Oh sweet relief!! Information is my friend! Here are some good websites google is a lifeline:

http://www.choroidplexuscyst.org/
http://www.wcox.com.au/choroid.htm (this one specifically says that if CPC's are the only risk factor they do not recommend amnio, but of course that is up to you)
http://www.dor.kaiser.org/genetics/OurServices/ChoroidCystsMain.html


Being the nerd that I am, I went to medline and read the actual study. I wouldn't recommend this, but will summarize. Much more research needs to be done to actually establish a link when the choroid plexus cysts are the ONLY indicator. Looking at the hands, heart, and other telltale marks are much more conclusive.

We did not do the amnio or have any other testing. After reading the info, I can't say I was even as scared waiting for the second US as I was waiting to get out of the scary first trimester. We had the second US and the cysts had resolved on their own. I've talked to others whose DC's had the cysts at every US until birth and they've delivered babies without complications (sorry, don't know the PC way to say this. Every baby is a gift and normal for themselves. I want to say normal, but that means different things to different people).

Long story, I know. I hope it made sense. Sorry the links didn't post correctly.

Emily is now 7 months old, and a crawling babbling little angel without complications. Now I'll just start shameless bragging. She's hit every milestone extremely early, says "Dada" to just her daddy now (used to also be the lamb, the dishwasher, whatever). She crawls, pulls herself up, smiles wth her whole body, took her first swimming lesson today... I could go on for ages. She couldn't be more perfect :) I tried to prove it with a picture, but failed miserably.


So, I'm sending you some huge hugs, a little information, and hopefully a little relief. I hope everything works out for you and you keep us posted.

Michelle

[zen_bliss]

another BBB member and dear friend went through this. perhaps her story and the many supportive ones shared in these threads will comfort you as well.

http://tinyurl.com/a2xlz
http://tinyurl.com/9baab

[thomma]

We've been there. During our 20 week u/s they found several c.p.cysts on baby b's brain. After talking to the peri after the u/s, we decided not to go through with an amnio. For us, the risks of something going wrong with the amnio outweighed the cysts resulting in trisomy 18. Dh and I were very worried. At our next u/s the cysts were gone and we got a very chatty tech who spent 15 minutes telling us not to worry and why. I stopped worrying as much after that but it was always in the back of my head.
Well, baby b ended up being a girl and she is now a very healthy (and energetic) almost 3 year old.

We didn't find out the sexes of our twins either. We ended up with one of each.

You'll be in my thoughts. Keep us up to date.

Kim
t&e 5/03

[kboyle]

OK, I'll tell you what I know from an ultrasound standpoint. When learning OB pathologies there were different markers for different problems. BUT the fetus had to have ALL the markers to have a specific problem. If baby's hand was wide open today they won't suddenly clench and stay clenched next week. Just one marker will not make a specific problem.

From what I learned about choroid plexus cysts is that they are pretty normal in younger fetuses and without other markers for specific diseases, tend to go away around 24+ weeks. Like pp said about their friend who went in for the 26wk check and the cyst was gone.

And about another pp about the "white" spot on the heart, when in my externship at a Maternal-Fetal office about 60% of the babies that got scanned had that "marker".

I think that OBs give us that warning talk as a "just in case" In my experience and observation at that office when something is wrong, they pretty much tell you right away. If they have you come back in 6 wks chances are it's nothing to worry about. I have yet to hear an OB find something and NOT tell the patient during that appointment.

Good luck to you and I hope that these posts have alleviated some of your worry :)

big hugs and i will pray for you and your family!

[heatherlynn]

I had the white spot, too. Echogenic Focus, I believe it's called. DS is a perfectly healthy 16 month old.

To the OP: I read a lot about these cysts when I was researching about Echogenic Foci. Basically what I came away with is that there isn't really anything to worry about with these (easy for me to say, though). My doctor said (and I know others were told this as well) that U/S technology is so good now that they can pick up so many more things than they used to.

Hugs to you. Try not to worry too much, although I know how hard it is.

H-
Heather
dd 3/98
ds 8/04
dd 11/05

[TaChapm]

(((HUGS))) I am so sorry you are having to deal with this. I am sure everything will be fine but I know it must be weighing heavy on your mind. I couldn't imagine. You are in my thoughts and prayers.

Tara
Mommy to Jackson 11-10-02
Tyler William 6-9-05

http://b4.lilypie.com/p1eI0/.png[/img][/url]

http://lilypie.com/baby1/060609/3/0/1/-6/.png

[tiapam]

I have BTDT. At the US where we found out, I think we either did not get very good info, or we did not process it very well. At the next appointment (different doc), we were reassured. If you were not inclined to do an amnio before, my advice would be to stick to that decision. Our baby's cysts went away.

As PPs said, they kind of have to tell you this, because it's your baby/body. And it sounds scary, but as I understand it, they usually go away. I hope you can get some reassurance from these posts so you can stop worrying so much.

-Pam

DD - One year old!

[wagner36]

This baby had a choroid plexus cyst at our 20 week ultrasound too - it was quite large. Our major concern was that the baby was not particularly cooperative at the ultrasound (head down, face down), so they couldn't get views of some of the other markers for Trisomy 18 (clenched hands, facial features) and the heart views were really hard to get from the angle too.

We chose not to do the amnio, but scheduled a Level II ultrasound for 4 weeks later (it was last week). They were able to get excellent views of the other markers, and the cyst has shrunk considerably. We can choose to have another scan done at 32 weeks to check on the status, but it may not be visible then because the skull may be ossified enough that it is difficult to get a good view.

[firstbaby]

Everyone's stories and words of encouragement have helped so much over these last LONG six weeks. Seriously, I can't tell you how many times I would be up at 2 am and search to find this thread to calm my nerves and settle back to sleep.

We decided not to do the amnio - we figured we would know for sure at 26 weeks so tried to make peace with our situation. We just had our follow up u/s and the cysts were completely gone. I think I had tried to compartmentalize all of my anxiety because as soon as the u/s started I was sobbing. The tech said "here is the choroid plexus area in the brain" or something to that effect so I thought the cysts were still there. She then said "and you can see that the cysts are gone". Well, no, I am not a trained u/s tech but her words took the weight of the world off of my shoulders!

Thank you again to you fabulous ladies and your support!

[Robyn0204]

This happened to us with my son (our first pregnancy). He is a perfectly normal 3.5 year old now! We were sent to a perinatalogist for another ultrasound and he looked for the same things...the open hands and what not. He told us that he had to offer us the amnio but that he wouldn't recommend it because there were no other indications of something being wrong (other than the cyst). And that there were much higher risks of going through with the amnio. We did not have the amnio done. Later on in the pregnancy we had another ultrasound and everything was fine, it was gone. My advice is to try and relax and wait until the follow-up ultrasound. I think everything will be fine. Of course this is just my opinion.

I hope you find the peace you need right now.

[mudder17]

Oh my gosh, that is wonderful news! Congratulations! Thanks for the update!

Eileen

http://www.mothering.com/discussions/images/smilies/candle.gif for Leah
http://www.gynosaur.com/assets/ribbons/ribbon_emerald_18m.gif

http://tickers.baby-gaga.com/t/catcatcvi20040222_4_Kaya+is.png
Kaya's a cousin! 10/1/05, 5lb13oz

[buddyleebaby]

Hooray!

[dotgirl]

That is such great news. I'm so happy for you!

(I like how they say, "And here you can see ..." Look, I'll admit it - most ultrasound pictures look like a Martian landscape to me - I can't see anything.)

[brittone2]

Doing the happy dance with you today, mama!!! :) I hope the rest of your pgcy is smooth sailing now :)

[newnana]

Oh congratulations!!! Sweet dancing Moses, joyous relief! Take care of yourself, and go indulge in whatever you find indulgence in: massage, Easter candy, naps, buying baby stuff...

Hugs to you!!!
Michelle

[kristine_elen]

They also found cysts on Sasha and so we had to worry about all this, too. My husband really wanted to do the amnio, so I agreed. Just before the OB was going to stick me with the needle, she said, "You really don't want to do this, do you?" I said NO and got a bit emotional. The odds that the baby had Trisomy 18 were much smaller than the odds of something going wrong with the amnio (even though the odds of that are not high, especially if you're at a good hospital where they know what they're doing).

We didn't do the amnio and instead opted to just do another ultrasound later when they could see if the hands were clenched or not. That ultrasound showed open hands, and she didn't end up having Trisomy 18.

The odds that your baby has T18 if there are no other signs are REALLY LOW.

Good luck to you!

[Dcclerk]

I do love that Zen Bliss ;)

That was me. I completely, completely understand how horrible you probably feel right now. Sometimes I felt like I couldn't breathe, I was so devestated. People kept telling me all of the odds, and how little the cysts really were, etc., but head knowledge is different than heart knowledge. It is so terribly hard at the beginning.
(And, coincidentally enough, we didn't find out the sex, either.)

But if you want another "success story," my little girly is one. The cysts kept shrinking and shrinking until they couldn't see anything any more. (Also, I have heard that they may not shrink, but still will be fine, anyway.) By the time I gave birth, her ultrasound looked no different than any other.

And, DD is now an amazing little 11 month old, who borders on perfect, says this none-too-proud mama. :)

Give your self all the time you need, and if you have any questions about our experience, feel free to ask away.

Big hugs to you, my dear.

[octmom]

Happy day! I'm so glad you got great news! :)

Jerilyn
DS, Sean 10/03
DD is scheduled to arrive via c/s on March 21! :)

"Baby makes days shorter, nights longer, home happier, and love stronger."

[hez]

Happy news :) I'm glad that your fears have been relieved. I'd have been bawling right along with you!

[hez]

n/t