Need to Share: Choroid Plexus Cysts

URMySunshine77 · September 2012

I struggled with whether or not to share this a/s news with you all. I have purposefully not told my parents and ILs because they should not worry. Our a/s went so smoothly last Friday. The technician kept telling us how normal our baby boy looked, and the organs and bones seemed to be in tip-top shape. My heart was put at ease. Afterwards, she said that the doctor would come in for the routine conclusion to the session.

When the doctor came in, she had a very cold and distant bedside manner, and this made me feel unsettled. She started doing the final ultrasound and I noticed that she was fixating on the baby?s head. Finally she said that the baby has fluid-filled cysts called Choroid Plexus Cysts. They are soft markers for Trisomy 18 and 21, and we would have to talk to the genetic counselor and make an appointment for another follow-up ultrasound.

DH and I were anxious because the doctor made the cysts seem ominous; although she did say that one to three percent of babies have them in utero. All of my blood tests have come back really positive, and the genetic counselor said that I now have a one in 14,000 chance of giving birth to a baby with Trisomy 18.

Normally, they say not to Google this type of thing, but upon searching we found that most occurrences of these cysts this disappear within three weeks (between 17 weeks and 24 weeks) and have no negative effect on the baby?s brain or development. In fact, some of us adults have Choroid Plexus Cysts without knowing.

Sometimes this weighs heavily on my heart, but I truly believe that the cysts will disappear within two weeks. The baby did not display any physical attributes of Trisomy 18, so I won?t allow myself to imagine the worst in this situation.

Please keep our LO in your thoughts and send positive vibes. Thank you for ?listening.?

aklawrence1 · September 2012

Praying for you and your LO!!!

nycitygirl1 · September 2012

I'm so sorry to hear you're having to deal with this and am keeping you and your LO in my thoughts and prayers. I hope these clear up and are no big deal at all. Do you by any chance get your u/s done at SF Perinatal? FWIW I met with their genetic counselor (who also works at UCSF) and found her to be really wonderful and warm -- so if you are considering any further testing she is a great resource.

Keep us updated and let us know what happens.

lindsey913 · September 2012

Try not to worry. With DS1 they saw a CPC on his a/s. It was gone by the time they later did a growth u/s. My Dr wasn't concerned (no other soft markers either) and there was no mention of talking to a genetic counselor or having any other scans done. There are other ladies on this board who have experienced the same thing.

Many T&Ps that they resolve quickly!

URMySunshine77 · September 2012

aklawrence1:
Praying for you and your LO!!!

Thank you, AK!

nycitygirl1:
I'm so sorry to hear you're having to deal with this and am keeping you and your LO in my thoughts and prayers. I hope these clear up and are no big deal at all. Do you by any chance get your u/s done at SF Perinatal? FWIW I met with their genetic counselor (who also works at UCSF) and found her to be really wonderful and warm -- so if you are considering any further testing she is a great resource.
Keep us updated and let us know what happens.

Thanks for your support, NYC.

The genetic counselor at CPMC was very kind. I wish that the doctor had said that this will probably amount to nothing. I suppose that she legally can't.

There is a new blood test called Harmony that could tell us for sure whether or not the baby has either Trisomy, but it is costly. I am 99.5% sure that the baby will be fine, so I'm going to refuse the blood test and amnio.

URMySunshine77 · September 2012

lindsey913:
Try not to worry. With DS1 they saw a CPC on his a/s. It was gone by the time they later did a growth u/s. My Dr wasn't concerned (no other soft markers either) and there was no mention of talking to a genetic counselor or having any other scans done. There are other ladies on this board who have experienced the same thing.

Many T&Ps that they resolve quickly!

I appreciate your sentiments, Lindsey! They are comforting.

lulamagoo · September 2012

Many hopes and prayers that this resolves itself. Please keep us posted.

ashcody2 · September 2012

This showed up on our a/s as well and my Dr. stressed that is was no cause for concern, no mention of genetic counseling, and also stated that the cysts usually go away on their own as well. My fiance's stepfather still actually has his and is 100% healthy with no problems whatsoever. I also did not want to even mention it to my mother or grandmother (wish I hadn't actually) because they freaked out of course, even though the Dr. basically told me not to worry at all.

URMySunshine77 · September 2012

lulamagoo:
Many hopes and prayers that this resolves itself. Please keep us posted.

Thanks, Lula!

ashcody2:
This showed up on our a/s as well and my Dr. stressed that is was no cause for concern, no mention of genetic counseling, and also stated that the cysts usually go away on their own as well. My fiance's stepfather still actually has his and is 100% healthy with no problems whatsoever. I also did not want to even mention it to my mother or grandmother (wish I hadn't actually) because they freaked out of course, even though the Dr. basically told me not to worry at all.

I'm glad to hear that. Once I started reading more about it, I felt more at-peace. Thank you, Ash.

Tildacaddy · September 2012

They found one at my a/s, too. My doctor was very reassuring but of course I'm worried. She has me coming back for an u/s at 21 weeks to check baby's hands- apparently trisomy 18 babies can't completely open their hands after 20 weeks.

URMySunshine77 · September 2012

Tildacaddy:
They found one at my a/s, too. My doctor was very reassuring but of course I'm worried. She has me coming back for an u/s at 21 weeks to check baby's hands- apparently trisomy 18 babies can't completely open their hands after 20 weeks.

Tilda--please keep me updated. You can always send me a PM if you need to vent!

nycitygirl1 · September 2012

URMySunshine77:
aklawrence1:
Praying for you and your LO!!!
Thank you, AK!

nycitygirl1:
I'm so sorry to hear you're having to deal with this and am keeping you and your LO in my thoughts and prayers. I hope these clear up and are no big deal at all. Do you by any chance get your u/s done at SF Perinatal? FWIW I met with their genetic counselor (who also works at UCSF) and found her to be really wonderful and warm -- so if you are considering any further testing she is a great resource.
Keep us updated and let us know what happens.
Thanks for your support, NYC.
The genetic counselor at CPMC was very kind. I wish that the doctor had said that this will probably amount to nothing. I suppose that she legally can't.
There is a new blood test called Harmony that could tell us for sure whether or not the baby has either Trisomy, but it is costly. I am 99.5% sure that the baby will be fine, so I'm going to refuse the blood test and amnio.

Sounds like a good plan! If you are not feeling the testing, then go with your gut. Keeping my fingers crossed for you that the next u/s goes wonderfully and everything has resolved by then.

Sep5Bride · September 2012

We are going through the same thing. We had our 20-week anatomy ultrasound last Thursday and everything seemed fine, and then the midwife mentioned at the end of our appointment that they saw 2 CPCs and she would like me to see a specialist in a few weeks for a more detailed ultrasound. She offered no information on what it meant and I was too thrown off at the time to ask any questions. I googled it of course, and at first I was really upset, but as I read more it sounds like there really isn't much correlation between CPCs and Trisomy 18 or Down Syndrome. Now I am waiting for a call back from a doctor from the same group to see if he thinks I really need to go ahead with this extra appointment and ultrasound, or if it is okay to wait and talk to him more about it when I see him in a few weeks.

Actually, I just heard back from the doctor as I was typing this, and he confirmed what I was finding online. He said a few interesting things: 1) The risk of Trisomy 18 is typically associated with large CPCs and with today's ultrasounds they pick up much smaller CPCs than they used to be able to detect. 2) Only 1/400 cases where CPCs were found turn out to be Trisomy 18. 3) There is an increased risk of Trisomy 18 with increased age. In a study with 1000 patients under age 35 with CPCs found on ultrasound, none of them actually had Trisomy 18. 4) In cases of Trisomy 18 there are typically more markers noticed on the ultrasound than just the CPCs. If they didn't see any other markers on the anatomy ultrasound (thankfully they didn't with ours!) the risk is very, very small.

I am very relieved to hear all of this, I just wish the midwife had given us this sort of information right away!

Anne22202 · September 2012

My healthy 2.5 yo daughter had a cp cyst. I was told that unless they see the obvious other deformities, it does not mean much on it's own. I was told by my geneticist it doe not relate to t21. Just t18. Good luck! Try not to worry!

caitywc · September 2012

Anne22202:
My healthy 2.5 yo daughter had a cp cyst. I was told that unless they see the obvious other deformities, it does not mean much on it's own. I was told by my geneticist it doe not relate to t21. Just t18. Good luck! Try not to worry!

I just had my ultrasound and my baby girl has one too; they are really no big deal, ESPECIALLY if your tests have all been good and her anatomy is normal. I don't know why your doctor was such a weirdo about it. The doctor who spoke with us was super calm and said he sees about one of them a week in all the babies he sees. If the baby has trisomy 18, it will have clubbed feet and deformed hands. Our baby has perfect little hands and feet so it's like 99.9999999999% sure that she doesn't have trisomy 18. Plus all my tests were good, so they specifically didn't even recommend any invasive testing. The only reason they tell you that is because 1 in 3 babies with trisomy 18 have the cysts. They have to tell you all the facts, it's their job. He said OBs are interested in them, pediatricians are not. 1-3% of us are all walking around with them! Also, a lot of the time, they disappear over the pregnancy. Don't worry! Your baby will be just fine!

littlemaybaby · September 2012

I'm sorry you have to worry about this. Please keep us updated and I will keep you and your baby in my thoughts. Hugs.

brittandjp · September 2012

Definitely thinking of you and your LO. Even though the chances are so small, it's still hard to hear that everything isn't perfect. We found out that our little girl has a very tiny amount of extra fluid in her kidneys, which is a soft marker for downs. It's so insignificant and with all the other tests being perfect, my doctor isn't the least bit concerned. It almost always clears up on its own. While we are definitely expecting everything to be fine at our follow up anatomy scan around 28 weeks, it's hard to not think about it and worry as a parent.

Please keep us posted!!

eb1113 · September 2012

I completely understand how you're feeling. With DD, CPC showed up on the a/s. I freaked out. I tried and tried to remind myself how the tech told me that they often go away. She also said since there were no other markers, she was sure they would disappear. However, I still was upset. I remember crying to my Mom on the phone was DH went to get us coffee.

I did calm down with my Dr called. (Sorry to hear your doctor was so cold!!!) She repeatedly told me not to worry and she told me she just delivered a perfectly healthy baby the day before that had CPC on the 20 week u/s. She also told me that many adults can walk around with them and not even know.

When we went for the first level 2, that doctor told me I needed to get an amnio or at least be prepared for it. That did not settle my nerves, but make me upset! At the first level 2, the CPC were still there. Two weeks later, we met with a different doctor for the level 2 and the CPC were gone.

As long as you weren't told of any other markers, the cysts should disappear.

Keep thinking positive for you and the baby. I'll keep you both in my thoughts!

URMySunshine77 · September 2012

Thank you, everyone, for your kind words and shared experiences. I expect the best to come out of this.

eSynergy · September 2012

I'm sorry you had to worry about this. If it makes you feel any better, our 2-year-old also had CPCs and so does this current baby. The doctor said he even hesitated to tell me about them, because everything else looks fine on the ultrasound. I'm confident your LO will be just fine!

URMySunshine77 · September 2012

Thank you, thank you! I think that I just got assigned the wrong doctor to break this news. (The ultrasound doc is different than my OB.)

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