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Choroid Plexus Cysts and My Scary Ultrasound

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It was a big day. I was pregnant with our first baby and we had an ultrasound appointment scheduled in the afternoon. Today was the day that we would (hopefully) find out if we were having a boy or girl.

We had a late Friday afternoon appointment, something that I had scheduled purposely so my husband and I could celebrate with dinner and then go home. Once in the ultrasound room, we were so excited. We held hands as we watched our unborn baby on the monitor. As our baby moved, it seemed unbelievable how developed the tiny features were. It wasn’t always easy to tell what I was looking at but our technician was explaining what we were seeing on the screen.

When she got to the head, she began the measurements and then matter-of-factly said, “There are choroid plexus cysts in your baby’s brain.” That was the moment that I felt like my breathing stopped. “Cysts in your baby’s brain” was all that I heard. “What does that mean?” We both asked at the same time. “I can only give you the information,” was her answer. She mentioned that there were some conditions where choroid plexus cysts are present in an ultrasound (like Trisomy 18) but she suggested that we contact my doctor for questions. But it was Friday evening and the doctor’s office would not be open until Monday.

We went to dinner as planned, but my husband and I were mostly quiet as we ate our food. Not quite the celebration that we had planned on. We were both anxious to get home and get online to research what we were told. We found quickly that having the access to so much information was more harmful to us than helpful. We were searching and finding all kinds of heart wrenching information on Trisomy 18 and other conditions. I cried a lot that night and during the rest of the weekend, unsure of what this meant for our baby and our family.

And we told no one. We hid our frightening news from the excited friends and family that called to ask about the ultrasound results. Monday morning could not come soon enough. I called my doctor around 5:30 when I awoke and left a message. It was normal for his nurse to return my call when I left messages so I wondered the entire drive into work, when would I finally get to talk to her? I had just arrived to my office when my phone rang and my doctor was on the other end. Immediately I thought, this MUST be bad. Why else would HE call me back?

The answer that he gave me was a huge relief. He explained that the choroid plexus cysts in our baby were isolated and nothing that we needed to worry about. He had my ultrasound with him and saw nothing else that would indicate any abnormality. He reassured me that even his daughter had them present in an ultrasound and his wife was also very upset but he explained to her, just like he was now explaining to me, that they were nothing to worry about.

Here is a helpful explanation of choroid plexus cysts written by Jillian Lokere and found at www.babyzone.com.

“The choroid plexus is an area of the brain that is not involved thinking or personality. Rather, the choroid plexus makes a fluid that protects and nourishes the brain and spinal cord. When a fluid-filled space is seen in the choroid plexus during an ultrasound, it is called a choroid plexus cyst (CPC). "We don't know why, but between 1 and 3 percent of all fetuses will manifest a CPC at 16 to 24 weeks of pregnancy," says Dr. Roy A. Filly, a Professor of Radiology and of Obstetrics, Gynecology and Reproductive Sciences and Chief of the Section of Diagnostic Sonography at University of California, San Francisco. CPCs can be found either on one side of the brain (unilateral) or both sides (bilateral). They can vary in size and shape, from small and round to large and irregular. Some fetuses have more than one. Dr. Peter Doubilet, a Professor of Radiology at Harvard Medical School, adds, "That's one very important fact. CPCs are not harmful, and they nearly always go away by the third trimester of pregnancy."

My doctor told me that he would order another, late term ultrasound to give us the peace of mind that they were gone.

He was right. In the ultrasound that followed our scary ultrasound, there were no longer choroid plexus cysts present in our baby’s brain. I share this story now because it has already helped couples, just like us that were panicking after their ultrasound. I also encourage pregnant women to schedule ultrasounds for times that they know that their doctor will be available for questions. In both my following pregnancies, I never scheduled another Friday afternoon ultrasound appointment.

I hope that by sharing this story, other parents will not have to go through the worry that we did over that long weekend. I am happy to say that our baby BOY was born healthy and perfect. It has now been 6 years and our son is still a healthy, growing, learning and perfectly normal kid. There is also much more information available online than there was when we needed it. Share this information. It only helps others.

Add a Comment51 Comments

(reply to Anonymous)

I hear the fear in your post. Personally, I think you need to express those fears and concerns immediately to your doctor.

When will you get the results of today's test?

May 21, 2009 - 6:30pm
EmpowHER Guest

Thanks for posting this! I just turned 28 and am due October 3. We had our 19 week scan yesterday, found out it was a baby girl, and every bone and organ measured right on track. When we got to the appt. with my midwife an hour later, she came in to tell us they found a CPC on our baby's brain. I IMMEDIATELY started crying, and she asked if there were any genetic defects, specifically trisomy 18 in our family. I know this is SO rare for a 28 year old woman, but I am SO afraid. I want to get another Ultrasound to make sure all is okay, but I also want to wait past 24 weeks (probably between 26-28 weeks) to make sure its gone! I just don't want to worry anymore. Any advice?? Should I see a genetic counselor for the next ultrasound?

May 14, 2009 - 7:45pm
(reply to Anonymous)

I understand exactly how you are feeling. When my doctor discussed my situation with me, he told me that there were no other indications that anything was out of the ordinary. Everything else measured just how it should have. Talking with him and discovering that it was common to find an isolated CPC helped to put my mind at ease. You might consider talking to an OB/GYN. Another opinion could bring you some comfort. I hope that everything turns out okay, just like it did for us.

May 14, 2009 - 9:54pm

Susan, it's wonderful that you thought to share this story. Clearly, women hear those words every day and come home to search the internet just like you did. Happily, though, they can also come across your story now, with its explanation and emotion, and worry less about something that might have caused enormous stress. That kind of post is what EmpowHer is all about -- women helping women. Well done.

May 12, 2009 - 9:48am
EmpowHER Guest

Thank you for sharing. I am due 9/26/09 and just had my 20 week u/s on Friday and was told the same thing. Because I just turned 30 two months ago, they had to tell me about it because over 30, your odds of Trisomy 18 go up if they find a cyst. She said they don't usually say anything if your odds are 1:1000 or less, but because I am 30, my odds are 1:909, so she had to tell me. I said "So if I had gotten pregnant 2 months earlier, you wouldn't have told me because I would have been 29 years old?" and she said "Exactly". Nice. Anyhoo - I know it's probably nothing because it was a level 2 ultrasound and everything else looked perfect. But way to scare me Dr.!!

May 12, 2009 - 7:03am
EmpowHER Guest

Thank you so much for posting this. We just our 16-week ultrasound for our twins today. One of our precious babies has a CPC but thankfully his heart and body size are all normal. You definitely have calmed my nerves, and I thank you for posting this story. I hope all is well for us at our next appointment in 3 weeks.

May 5, 2009 - 10:33am

Thank you for sharing your story and this important information. I would be concerned, however, that the technician chose to tell you about the possibility of the condition herself, rather than have your OB consult with you. It has been a very long time since I've had an ultrasound. Is it normal for the technician to reveal information like that without first consulting the OB?

April 30, 2009 - 6:22pm
(reply to alysiak)

No. I don't believe that it is normal for the technician to even suggest conditions and it shouldn't have happened. Every untrasound that I have had since that one, we were only given information about what was seen on the screen. I think we just had someone that did our ultrasound that day that made a poor decision in mentioning something that we didn't even need to worry about. Thanks for your comment.

April 30, 2009 - 7:47pm
EmpowHER Guest

Hello I also went for a sono on April 29,2009.. Doc said everything is fine and he didnot want to tell me about the cyst because he didnnot want me to panic but I did anyway.. He said he was sure it would go away since everything else was normal. Well as soon as I got home I went searching online trying to inform myself about it.. I am hopefull it will go away....

Baby Girl
due Sept 23rd 2009

Thank you so much for you story.....You are very kind to share it with us...


April 30, 2009 - 5:58pm
EmpowHER Guest

I just had my ultrasound this morning and was told the same thing. The neonatologist was there and was able to tell us that there were no other signs indicating a problem i.e. clenched hands or feet or a malformed heart. He also said that after reviewing my 13-week screen and lab work he didn't think we should worry. We have a 1 in 10,000 chance that this is more than just an isolated CPC and we could be the one but i feel better knowing that this is more common than i realized. Thank you so much for your post!

MJ--due Sept 6th 2009.

April 28, 2009 - 10:08am
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.


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