Cyst on the Brain Diagnosis (Choroid Plexus)

Hi J.,

We had that with both of our girls. We were so scared at first, but did lots of research and the geneticist was extremely reassuring. I am happy to say that both of our girls were born perfectly healthy and are now healthy and thriving at 3 and 5 years old.

We had the exact same thing. I think our U/S was done at 19 weeks. The cysts were about 11cm on both sides. They had wanted us to do an amnio, but we opted not to bc there was nothing else in the U/S that showed any possible signs of trisome 18. The hands were good, the heart was good. When we did another U/S at about 22 weeks, the cysts were gone. Don't worry about them! I say this now, but it is hard not to. I feel that they should not have told us about mine. It just causes undue stress. Everything is going to be fine.

We had the exact same thing happen to us with our first child, started doing research online and got very nervous. But it absolutely resolved and everything was fine and baby was very healthy (he's now 4 1/2). I think if the AFP came back low and the rest of the ultrasound went well- heart looked good, limbs, etc. you have nothing to worry about. I think the doctors just have to cover themselves and report everything they see due to malpractice insurance, etc. The cysts may even resolve by the time you have your level II as they are normally occuring as the brain develops. Ours went away at 22 weeks. We opted not to do an amnio which was recommended because all others factors looked fine (AFP and ultrasound) and we decided to just do a followup ultrasound at 22 weeks. All was well. I'm sure it will be for you too. Take care!

We had the same diagnosis at our 20 week US and like you, our AFP was low and they did not find any other markers for genetic disorders. We also did research and were freaked out by the association with Trisomy 18! Our OB offered us an amiocentesis but the risk of miscarriage with an amio was far greater than the cyst persisting. So, we declined. We had a f/u US for a low lying placenta at 28? weeks and the cyst had already resolved. My daughter is 5 months old now and perfectly healthy. I know you can't help but worry but the cysts are fairly common( I know two other people with similiar stories and both babies were completely fine.) I work as a physician assistant and know multiple people in the medical community -- including a close friend that works in pediatric neurosurgery and another in neonatology -- everyone told us not to worry about it at all! Good luck with the rest of your pregnancy.... and try not to worry :)

One of my good friends had the same thing happen. It was really scary for a while, espeacially after she came home and did research on the internet. Everything turned out fine though and the cyst went away on it's own a couple months before the baby was born. Turns out, it happens pretty often and usually goes unnoticed. I know it is hard, but try not to worry too much and don't spend too much time researching it yourself until you know for sure that your baby has the disorder that is linked with cysts. There are other symptoms of the genetic disorder that are apparent with the ultrasound, so if those didn't show up most likely it will go away soon.

Just wanted to post another story of the finding of a cyst on the US turning out to be fine. With my first I had an US at I think 20 weeks also. There were no other markers but they did find the CPC. I had already planned on having an amnio anyway so I really only had to wait 2 weeks and then found out for sure that there weren't going to be any issues which gave me great piece of mind. What they told me during the US was that before they had really good US technology the statistics showed a correlation between one of the trisonomy defects (can't remember which one 18 or 21) and babies with a CPC. It turns out it may have been more coincidental and there really isn't a correlation but since there is a small chance that there is an issue they have to advise you. I did my own research at the time and found a gazillion people who had the finding and then had no issues. Chances are everything will be totally fine but after having gone through 2 pregnancies I understand the feelings of uncertainty. Good luck!

Sorry don't have any experance with that But just wanted to let you know that I will keep you in my thoughts and prayers that it does go away

Hi J.! I am so sorry you have to even think about this. My now 8 year old son was diagnosed with the same thing and we struggled with what tests to do etc. The risk of losing the pregnancy via amnio was greater than the risk of having a problem. We opted to wait and see and deal w/ our fate at his birth and he was and is totally fine! I think we just know so much more w/ all the tests they can run and we sometimes know too much. I would bet your daughter will also grow out of it. If you want to talk more, feel free to contact me. I am still good friends w/ my genetics counselor if you need any further questions answered. Take care! A. Bone

This same thing happened to me during the pregnancy of my 2nd child. It was very scary to hear, but the statistics are on your side. Basically, the ultrasound technology has gotten so good that they now detect these more and more, but 99% of the time they do go away. I did have level 2 ultrasound, and several regular ultrasounds during my pregnancy and an amnio. We chose to do the amnio so that we could do as much research as possible about any possible abnormalities. Everything came out clear on the amnio and the cyst resolved itself, as predicted by my doctor, before she was born. Good luck! C. A.

Let me start by telling you my 5 year old Toby -- who had choroid plexus cysts on a high level sonogram -- is running around next to me right now, completely normal and healthy and full of life. They said things lke "Risk of Trisomy 18.." which is a deadly condition, and I heard the words but my head was spinning. Thank goodness for the intertnet (where we learned it rarely means anything) and a sensible OB/GYN who reassured us. We too resisted the ultrasound docs' pressure to do amnio. We never even did the follow up ultrasound because by then I was convinced it was nothing, and even if they were or are still there, so what? Maybe we all have some. :-) In fact I forgot all about it until I read your post and the responses--I am amazed that they are still scaring pregnant women with this. It is a shame.
By the way, I called the place at UCSF where we had had the scary "diagnosis" and told them, "My baby is fine, just curious if anyone would like to add that to his file.. does anyone follow up on this stuff?" Apparently not. While I'm sure they were appy for me, they were not interested in recording the info anywhere... yet they are probably still scaring parents.. Glad we are all spreading the word now.

I was in your shoes about 1 year ago. we got the same diagnosis for my son in utero and we were really worried. - he is totally fine and now we know of several other people who have had the same experience and their babies are fine. It seems this is not uncommon in perfectly healthy babies.

I also have a daughter who is now almost 2 1/2 and my son is now 6 mos. I stay at home as well and while I wouldnt choose to have it any other way.. it is very tough sometimes.

Hang in there! I wish peace, love and health to you and your babies!

A.

Yes!!!!! I had a twin pregnancy and both of my babies were diagnosed with choroid plexus cysts! Kaiser wanted us to abort the babies due the the enormous risk of genetic disorders related to the cysts! This was not an option for us....after a second opionion which was not very encouraging and weekly ultrasounds for 2 months or better, the cysts never changed.

My genetic risks were extremely low so we took our chances. Had two wonderful healthy babies!The cysts were gone by birth! My doctor explained to us that this probably has been happening a lot in pregnancies over the years and gone on undetected because of the lacking technology. I say follow your intuition and breathe! Unless they give you good concrete evidence you should be worried, stay calm and enjoy this time because soon enough you will be enjoying you baby!

My sister in law had a very hard pregnancy. At one time they they found out that one of her kidneys was shrinking and the other one had a spot on it. The spot grew bigger as her pregnancy progressed. Then around the 20 week ultra sound they thought my nephew had a pool of blood or some form of mass growing on his brain. However by the time they did the other ultrasound a few weeks later the mass on his brain was gone which was good news. However they then thought her kidneys were going to fail and my nephew wouldn't survive. Well he was born at full term and the spot on my SIL's kidney disappeared after she gave birth. Now he is a very active normal 4 1/2 year old boy. Sometimes you just have to wait and see what happens. Good Luck!

I had the same thing with my daughter. A cyst was found on 20wk u/s and I completely freaked out. I work in the medical field (in cancer research) and did extensive research on my own. I also spoke to the head of neonatal u/s at my hospital who told me solitary CPC with no other risk factors are considered a "normal variant". Other posters are correct in something like 99% are FINE. My two year old was speaking in sentences at 20 months so trust me, she's 100% FINE and well ahead of the norm!

J. - We had this with our first child and it was very alarming, scary and stressful. I too made the error to google and read all the worst case scenarios. We are a BEST case scenario and our daughter is perfect. She is now 5 1/2 and VERY bright with absolutely no problems at all (besides being sassy). Just to let you know the CPC's continued to show up even on level 2 ultrasounds into 28+ weeks. In fact, I cannot remember having an ultrasound where it did not show up. We were just told that because it was only a soft marker and since there were no other markes or issues, it was nothing to be concerned about at all. Good luck!!

Hi J.,

I found useful information on a rare condition from NORD (National Organization for Rare Disorders) www.rarediseases.org. I hope this helps.

God bless you and your family!

Hi J., if its helpful, I have delivered over 5000 babies and have never seen this as an on-going problem! SO, just enjoy being pregnant and move on from here. You will probably have another follow-up ultrasound later when it has usually in my experience disappeared!

A little about me!
Certified Nurse Midwife in Mountain View California, and deliver out of El Camino Hospital. Mom to two children 10 and 14.
Love my work as a Midwife and a Mom!

Hello,
I was in your same shoes with my daughter who is now 6. With her, they found multiple cysts on the brain, had us go through genetic counseling (where they tell you anything and everything that can be wrong) and then did an amniocyntesis. Everything turned out fine . . . and they did go away on their own. It is just a scary situation, but hang on and take support from those around you. Congratulations of your little blessing.
J.

Hi J.,
I had the same situation with my son. He was found to have a choroid cyst in his brain and I was concerned. Like you, I read up about it and was some what reassured that it was a "normal" thing. His pediatrician was great and reassured me that it is very common to find these on the first ultrasound. Since his blood work was normal she was not concerned at all. At my second ultrasound, everything was found to be normal. I have a healthy 8 month old son who is adored by his 3 yr old big sister. I hope this helps to reassure you and wish you a healthy and safe pregnancy and delivery.
All my best,
T. C

I would honestly tell you that doctors always like taking their precautions. Some thing are minimal but they like to tell their patience wort case scenario. It's like saying: If you get in your car you are at chance of a car accident or whatever it is. I think that everyone has a time in their life when you are put to the test. Trust me the only thing that works and helps is praying. Try to stay positive, and I know that it is hard especially when you are pregnant. But everything happens for a reason. Try not to think about that. Hopefully you will be blessed with a healthy beautiful baby. Be positive and try to keep your mind busy in other things.

I got the same diagnosis with my third child when I was pregnant. I was terrified even though I was reassured by my OBGYN that the condition would go away especially since everything else was found okay in my amniocentesis. All the worry was for nothing b/c my son came out healthy as ever. I think if your AFP results came back low then the baby will be okay. All the best to you and your baby.

Like you, I had a routine ultrasound that showed a choroid plexus cyst on my son's brain at 20 weeks. Of course, I completely freaked out and was distraught. I did more research and found that 99.5% of the time, it's nothing to worry about. In fact, my OB said that it's something they're reluctant to tell parents about because it is almost always harmless but causes more worry than anything else. Suffice it to say, my son is now 2 1/2 y.o., and IMHO, none the worse for wear. He knows all his letters, letter sounds, numbers, colors, shapes (inclu. rhombus, pentagon, hexagon, etc.), days of the week, etc. He's starting to read CVC words. So, no... it did not cause any brain damage or other averse effects. So don't spend your days worrying (easier said than done!) because your AFP risk levels are low. Chances are incredibly high that it will simply go away on its own. Best wishes!

Both my second & third pregnancy ultrasounds showed these cysts. they are not on the brain, just in the skull cavity. with the first, i spoke to a genetic counselor & she reassured me that they are harmless & always go away by 24-26 weeks & that they don't do follow up ultrasounds because it's nothing to worry about. with my third baby the cyst showed up at 15 weeks with the amnio ultrasound & they 20 week regular ultrasound it was gone. no need to worry or stress.