Choroid Plexus Cyst (long post)

daisey6543

We had our A/S last Tuesday. We found out that we are having a baby girl, which we are over the moon about. After the scan, it is typical for the Doctor to come in to review everything - good and/or bad. The Doctor entered with another woman, who was introduced as a genetic counselor, which made my stomach drop. They proceeded to say everything looked great, except for a Choroid Plexus Cyst (CPC). These occur during brain development, where the spinal fluid is produced. It was explained that these cysts are not uncommon and that they find about 4+ on scans every week. I have to say that the genetic counselor was great, but when she said that these cysts can be a marker for trisomy 18 and explained what happens to a baby with trisomy 18, I lost it. I could barely compose myself and couldn't stop my mind from flashing back to our loss this past June.

We had the lowest possible risk for DS, trisomy 18/21 and NT defects based on our first trimester & quad screens. Considering those results, my age and that we didn't have any other markers, our risk went from .01% to 1.5%. However, all I could think as I drove home in tears is that I couldn't bare the loss of another baby.

We proceeded with a harmony prenatal test last Friday, which is a non-invasive blood test to examine the babies DNA (MaterniT21 is a brand name) to determine if the baby has trisomy 18. We have to wait 10 days for the results. Needless to say, my PGAL brain is in overdrive. Has anyone else had a baby with CPC as a marker? I am looking for guidance and perhaps a little reassurance.  Logically, I know that our risk is still very low, but my experience with loss is weighing heavily on me.  We are trying to stay positive and my DS has been a tremendous support this past week - so thankful for a logical sounding board. 

On a positive note, I had an OB appt. on Friday. When the nurse was using the doppler to listen to the HB, I experienced my first significant baby girl movement! So much so that the nurse felt her too - I was overjoyed!

Thanks in advance for any support, insight or guidance you may be able to provide.

Carrie3102

I have no guidance or experiance to offer.  I just wanted to tell you that I am thinking of you and I am sorry you are going through this.  All logic says things will be ok, but logic doesn't stop a PGAL brain at all.  Sending you hugs.

lksurface

Hi there. I can somewhat relate to what you are going through. We had our anatomy scan on Friday (it's a boy!) and afterwards the doctor came in to talk to us as they did you. The first thing he said was that he was sending us to Roanoke for a couple of things. My heart sank. (Roanoke is just a larger place with better technology). They found one cpc on our little boy's brain and he also had dilated kidneys. His levels were 2.3 and 3, and they consider 4 to be abnormal, so not quite there yet. The doctor told me that both of these findings aren't that uncommon but that they have to tell us and refer us for a higher level ultrasound. The kidney issue is more common in boys and my nephew had dilated kidneys and he is okay. He had to have surgery but it was fixable. So my little one could have something that was inherited. This past weekend my emotions were very up and down. The more I read about cpc's though the better I feel. I found a great website that has message boards about cpcs (as well as babies that have both cpc and kidney issues) and pretty much all turn out okay. Cpcs are very weakly related to chromosonal abnormalities so don't stress too much.  From what I've read cpcs may just be a normal part of development and that higher technology with ultrasounds these days are just catching more of them. So, if the cpc is the only soft marker they found, i'm sure your baby girl is perfectly fine. I know how scary it is though since I'm going through it too. I have my appointment in Roanoke tomorrow and they told me after the ultrasound I'd have genetic counseling. I know it's standard but when she said genetic counseling it scared me to death.

Many hugs to you as you go through this. It is so scary but I feel pretty confident that both of our babies will be just fine. Please know I'm here if you need to talk. I'm sure we can help each other through this!!

starshine985

This was found on my a/s with DS.  We went back 8 weeks later for another ultrasound and the cyst had gone away (which is very common).  I know it can be nervewrecking, especially considering what else you have been through, but know that it may mean absolutely nothing.  It is common for these cysts to appear and then disappear by the time the next ultrasound rolls around. 

I wish you the best of luck and good results on the blood test!

DeliteSmith

I don't usually post but wanted to let you know I just went through this a few weeks ago.  When we went for the a/s the Dr. does not usually come talk to you after the scan, so we were all happy (it's a boy!) and ready to leave when the tech suddenly says "oh, can you wait here" and then 20 minutes later a nurse brings us into the Dr. office where we waited for another hour.  After no explanation and waiting and thinking the worst things possible for an hour and a half, the Dr. comes in and starts talking about this cyst in his brain, and I seriously fainted on the table. Luckily my husband was there to listen to the Dr. because I couldn't function, it was really upsetting and it was so hard to not worry.  Everything else had come back normal so far, with low risks, etc., but they sent us for a level 2 ultrasound at the hospital the following week (2 weeks ago now). 

At the end of the level 2 ultrasound the specialist came in and said the CPC was already gone, the risk of trisomy 18 was down to lowest possible, and everything looks good.  After reading up it really does seem like this is just something that could be normal that didn't get picked up in the past, seriously wish I didn't have to go through that, it was very stressful.  Hang in there and and I hope all is well with your LO, too! 

stacy&seth

It seems your dr is just being especially conservative making sure all is fine and while that is great it freaks the mess out of us mommies!  At my a/s for my first son they found the same cysts.  My eyes teared up and I couldn't pay attention. Our follow up up a month or two later was totally fine and he is currently four and one of the smartest most amazing people ever!  The a/s I had a few weeks ago for our newest addition also found cysts.  The dr said "everything looks great.  We did see a few cysts that we will follow up on, but everything else looks great."  So next week we have a follow up and this time I'm not worried.  In and of themselves they aren't anything to worry over.  Machines are better and pick them up all the time now where before they weren't capable of finding them.  Also if there were no other markers the odds that it means anything negative at all is so minimal it honestly isn't worth losing sleep over, but I totally get how you are feeling and I hope you get confirmation that your lil bean is perfect just as you knew it was before the scan!  Try not to worry.  

Kuveetha

I had a similar experience 3 weeks ago. We were initially called in for our A/S earlier because my blood screening showed our LO was at a higher risk for a neural tube defect. So at 17wks we ended up meeting the Genetic Councillor before our scan. She discussed what it meant and assured us that if the scan looked good we would not need amnio. So going into the scan, DH and I were just hoping that LO's spine was fine. The technician was able to say everything looked great and even we could see a very clearly formed spineal column. We also found out we are having a boy (yay!) and then she said the doc would come in to answer any questions.

The doctor then assured us there were no signs of a neural tube defect (phew!) but that our LO had a CPC instead. He also ran through the trisomy 18 marker speech that you got and this completely freaked us out! I think the docs have to state what it means because in their records, it puts us as a 'higher risk' for T18 because of it being a marker. However, the scan should also show several other markers such as underdeveloped organs, crooked fingers & toes, etc. Since our scan was otherwise fine, he said we could rule out T18 and they will do another scan at 28 weeks to check on the cyst. I wish he could have skipped to the 'ruling out' part of the speech altogether! It was a bit of a rollercoaster ride, but we're confident that our LO is doing fine. Especially after they had a clear view of all his organ, fingers & toes.

At my last OB appointment, she also reassured me that CPC's are very common and not to worry.

I hope this helps!

Kuveetha

To add to my previous post, I've been lucky to have additional support from a good friend who is a genetic councillor. I text her with far too many questions, and of course was freaked out about the CPC and told her straight away! She also assured me it's very common and will go away with time. These days the detailed scans we get can be a blessing and worry all at once!

rondosa

Hi

This happened to us at our scan as well. All blood work showed very low risk 1/24000 spina bifida and less than 1/50000 for tri18). But we did find a few CPC on our baby's brain. Doctor was very calm and told me it is not a big problem and will likely resolve itself but did explain some correlations to Downs etc.

I didn't freak out, I just took to Dr. Google.

 Here is a study I found showing no correlation with their patients, given no other tri18 markers 

 https://www.ncbi.nlm.nih.gov/pubmed/7847564

I also found a number of interesting discussions with parents who had CPC on their baby and the majority reported their children to be normal, an oddly high proportion reported their children as "gifted" and only one mom reported her son ended up being diagnosed with Autism. Not sure of the statistical significance of any of this data but I found it helpful and reassuring.

DH is hoping for "genius Peanut" lol.

Hope you are feeling more optimistic soon.  

BE2008

Had my a/s 5 weeks ago, same concerns and markers. Everything cane back clear. Cysts are extremely common in normal babies as well. Do a little research on the stats made me feel better while we waited on results.

luvmyducks

DD had them and she is completely fine.  My OB's office saw them at my 18w A/S and had me go to the MFM at 20w to f/u.  My OB said he was not worried at all--that 2 out of 3 of his own kids had them and are perfectly healthy.  Even with my PgAL brain, I felt totally calm about it and excited to see DD again so soon.

But then they had me meet with the genetic counselor before the scan--I really wish they would do it after the scan!  Anywho, she started telling me all the statistics and it scared the crap out of me and I was a balling mess.  The u/s showed the cysts were already smaller and she had no other markers for genetic disorders so the MFM told me he was 99% sure she was perfect.

When I talked to my OB next he said that the only reason they even thought it was linked to Trisomy 18 is bc back in the 80s or something when babies died from T18, they would do autopsies and a large percentage of them would have the cysts.  Later on (don't remember when) they started noticing that babies that died from other causes also had the cysts.  As did adults!  He said he doesn't even know why they worry too much about them anymore if there are no other markers.

GL and I'm sure your DD is perfect.    

daisey6543

Thanks everyone, I appreciate your support, insight and reassurance.