DISCLAIMER: The letters, notes and comments contributed to the ChoroidPlexusCyst.org Message Board and Chat rooms are the sole opinions of the individuals providing them. The ideas are not the opinion of ChoroidPlexusCyst.org nor are they presented here as facts. The information and links on this website were compiled by a layperson, and should only serve as a basis for discussion with a competent medical professional, and by no means should this information substitute for the advice of a medical professional. ChoroidPlexusCyst.org presents this data as is, without any warranty of any kind, express or implied, and is not liable for its accuracy, for mistakes, errors, or omissions of any kind, nor for any loss or damage caused by a user's reliance on information obtained from this website.
Welcome, Guest. Please login or register.
April 27, 2017, 12:43:07 PM
Thank you very much to *** kiyashko *** for making a generous donation to the Choroid Plexus Cyst website!
back in 2006 my 20 week u/s showed my baby had a choroid plexus cyst. I freaked out, found this site and was comforted with all the wonderful posters who shared their insight. I had to wait a few weeks to get a level 2 to check the choroid plexus cyst and by then it had disappeared. my son was born healthy and is 6 years old and doing awesome. he is also extremely artistic and creative. DON'T PANIC if there is a chorid plexus cyst discovered!
I remember the day over 8 years ago that I was told my baby had choroid plexus cysts. I was scared and devastated. I cried for days- -- I couldn't find any information --until I found this site! I came back a few years ago to say that "so far so good" and now I want to give another update. My eight year old daughter is not only healthy and bright, she has tested as profoundly gifted! So don't worry. I think the prenatal tests we have now are great in many ways but they also cause some unnecessary worry. We never had a second test to confirm whether they (the CPC) are still there or not. I just wanted to step back in and let you know about our experience. Best of luck to all of you!
My son was diagnosed with Choroid Plexus Cyst at 20 weeks. There was a heavy silence from our ultra sound tech, followed by a whispered "Hmmmm, that's interesting..." A moment that both made my heart sink and my blood pressure go through the roof. My Doctor later confirmed it and we were sent to the main hospital for an ULTRA Ultrasound within 48 hours.
During the time between the initial diagnosis and the Ultra-Ultrasound, I did exactly what I was advised against doing - I went to "Dr. Google" to learn more about this mysterious CPC thing. I cannot tell you how extremely grateful I was for this message board during those very dark and uncertain hours. I am so thankful, and will be everyday, for this site. There is so much that is designed to absolutely freak parents out, and I just loved that this particular board, for this particular diagnosis is run with such care and approached by people with such love.
The Ultra-Ultrasound came out fine. My boy even slapped his little hands and feet up on the "screen" so the ultrasound tech, my husband I could count all his fingers and toes. The cyst shrunk at every following ultrasound until it was no longer visible. Amen.
I am happy to report that he is a bounding and boundless little guy at a robust 13 months!
On the outside we all want our children to be 'interesting', 'unique' and 'special'. When they are inside our bellies, growing and developing, you are just so grateful for 'normal'. Thank you again CPC Message Board for being there when we really needed you. Take Care.
I am responding to an email for updates as well. In July of 2010 during our 16 week ultrasound two CPCs were discovered on either side of our daughters brain. We were notified in an email from the doctors office, and I immediately started googling. What I found took my breath away. The fact that we had just been celebrating our discovery that we would soon welcome a baby girl into our lives, now we had to deal with the possibility of a life threatening disorder that may even prevent us from ever meeting her. The email said that 1 in 100 ultrasounds ever showed CPCs, and that 1 in 100 of those that did actually indicated any disorder, such as trisomy 18 or Edwards syndrome. We were then told it would be 9 more weeks until we could see a specialist to do a higher level of ultrasound. The reason being that any sooner would not leave enough time for the cysts to clear up on their own. We waited impatiently for the 9 weeks, and went to see the specialist. The very first thing he said was our charts had indicated to abnormalities in the baby's feet, hands, legs etc. and that before he even did the ultrasound he could assure us that our baby did not have Edwards syndrome. He also said that not 1% but 33% of all ultrasounds were starting to show CPCs, and they were just spinal fluid that had built up in the brain, and were then transferred into the spinal chord. This, he explained, was a normal phenomenon of our development. The only reason we were sent to him was because the CPCs are known as a soft marker for a few different disorders. I became hysterical, we could now enjoy the rest of our pregnancy with the hope of a healthy child. Now I have a jumping, climbing, screaming, laughing and loving life 18 month old who is the light in my world. I feel so thankful for the team that looked after my pregnancy, and made sure everything was going well throughout it. I also realize that these disorders do affect some people, and my heart goes out to those who do not get to have the same relief that I did. Life is precious.
I am also responding to the mass email to give everyone a positive update. Our boy's scan showed CPCs and we were told that it was one of the markers for Trisomy 21. We were quite distressed since British doctors don't seem to be allowed to reassure, only tell you the possibilities. We agonized over whether to have an amniocentesis. But my wife said, 'well, what are you going to do if it proves positive for Down's?' So we didn't. A later scan showed that the CPCs had resolved, as they do. And when he was born, he was fine. He is now 6, and a very happy, normal boy. I just think CPCs are a normal thing that mostly resolve, and we only know about them because of modern invasive medicine. All very best to any parents to be out there who are worried. I found this message board very reassuring back then, and I hope you do to.
Just got the mass email asking for updates and support.
A little over five years ago, I got a call from my CNM letting me know that the ultrasound we had a couple of weeks earlier showed cysts on our daughter's brain. When I asked her what that meant, she named a few things that I don't remember now and also Trisomy 13 and 18. I knew what those were and I immediately freaked out after getting off the phone. The CNM had not told me how likely it was that my daughter had it. Just that it was a possibility. We had a level 2 u/s the next day and amnio the day after that. I had to know.
Turned out that our little girl was just fine. The chances of miscarrying from the amnio were higher than the chances of her having Trisomy 13 or 18 with no/few other markers (I think she had some extra kidney fluid maybe? can't remember). The doctor told us that they are finding more babies with these cysts on the brain than before, but that it is probably due to better technology. Probably quite a few babies have always had these cysts, but they weren't noticed before in older u/s.
Our daughter's cysts went away completely a couple of months later in the pregnancy. She's about to turn five and is an amazing little girl. Dh and I feel so lucky. We also have a son now (2.5 years old) too. We decided that if he showed cysts on his brain at the 20 week u/s, we would decline any other testing. No cysts.
I just felt I had to post an update and let you know how much this site meant to me in the couple of weeks between the day of that awful phone call and the day we got the results from the amnio. I hope lots of others are receiving the same comfort.
My son is now 5 years. He is a normal healthy 5 year old who is smart, amazing and full of life. When I was 16 weeks pregnant with him they found a CPC in his brain along with a problem with his kidney. When we first got the news I cried for 3 days straight. I was so scared. We followed up with special doctors and they felt he was going to be fine. As hard as it was we stayed positive and made it through the pregnancy. On February 2nd 2007 he was born healthy and happy. Funny thing the first thing out of my mouth when my son was born was "does he have t18" at that point it was no longer a concern for anyone but me and they all though I was nuts and honestly had no clue what I was talking about.
This board gave me hope when no one else could. It was such a relief to read other stories about parents whose chidlren had multiple soft markers and where fine.
At our 18 week ultrasound we were hoping for a perfect heart healthy scan. Our daughter Lennon passed in Feb 2011 from Hypoplastic left heart syndrome. Well we got a perfect heart healthy scan but was taken back when they told us our unborn daughter has CPC. It wasn't the cyst that bothered me so much it was the trisomy 18 that may come with it. They assured me it was just the cyst and she didn't have any other signs of a defect. We have been telling everyone that this baby is healthy not mentioning the cyst. I go Dec. 2nd for my follow up ultrasound. I have so much guilt about having another baby right after Lennon passed and guilt for just wanting a healthy baby. Anyone else in the same boat?
I am pregnang with # 3 and just found out on level II US that he has CP cysts. Only 1 year ago we had our baby #2 ( a girl), and went through the same ordeal with her. We did all the diagnostic follow up tests ( excluding amnio), I cried and stressed out a lot and agonized over whether I should do the amnio. As a result- We had a healthy baby girl, who is now 13 months, running around, happy, curious and smart So this time around, since everything looks exactly the same ( no other markers- e.g. head, hands everything looked good, just the CP cysts were present) I am more inclined to believe the doctor that this is probably just a development peculiarity of my babies, that we happened to catch on 18 wk ultrasound. I am telling myself to let go off worries and enjoy this wonderful pregnancy, because it is priobably my last! I hope you can do the same!