I was in my 22nd week of pregnancy and going for my second ultrasound. My husband and I were so excited because, not only did we get to see our baby, but we also would get to find out if it was a he or a she. I remember the sonogram was taking longer than usual (this was my 6th pregnancy, so I was pretty much an expert). At the time, I didn’t really think anything of it, but looking back I now realize that the technician was taking her time looking for something. We found out we were having another boy (our fifth), we were given our pictures and were sent out to the waiting room to await the check-up from my doctor. At the end of the check-up he turned to us and said nonchalantly, “The baby has a small cyst in his brain, but these are common and nothing to worry about.” He also told me he would want to do a follow-up sonogram in another month to make sure that the cyst was gone. Needless to say, when I heard the words ‘cyst’ and ‘brain’ in the same sentence, I was petrified. I went home and did as much research on choroid plexus cysts as I possibly could. A lot was reassuring, but a lot also made me even more scared about what this could mean for my baby. Here are some of the things that I learned about choroid plexus cysts and the effect they can have on a growing fetus:
What are choroid plexus cysts?
Choroid plexus cysts are small pockets of fluid that form in the choroid plexus part of the brain of a fetus. Wikipedia.com gives the best explanation for what these cysts are and how they form: “The brain contains pockets or spaces called ventricles with a spongy layer of cells and blood vessels called the choroid plexus. This is in the middle of the fetal brain. The choroid plexus has the important function of producing a fluid called cerebrospinal fluid. The fluid produced by the cells of the choroid plexus fills the ventricles and then flows around the brain and the spinal cord to provide a cushion of fluid around these structures. CPCs can form within this structure and come from fluid trapped within this spongy layer of cells, much like a soap bubble or a blister.” (Choroid plexus cyst, http://en.wikipedia.org/wiki/Choroid_plexus_cyst, 3, January 2009).
Choroid plexus cysts are usually detected in your second trimester on ultrasound, but can form and disappear before ever being detected. It is estimated that 1 percent, or 1 out of a hundred pregnancies are diagnosed with a choroid plexus cyst. The good news is these cysts in and of themselves are not dangerous for the fetus. They show no signs of causing disabilities or problems that can affect the health and well being of the baby, especially if they are isolated. But there are some studies that show some CPC’s are linked to chromosomal abnormalities in fetuses. It’s important to note before reading the next section that the odds of a CPC, or even multiple CPC’s, being detected in your baby’s brain being linked to a more serious defect is extremely low (only about 1 percent). So, keep in mind that just because cysts are present, that is not a diagnosis in any way for something more serious.
Can choroid plexus cysts mean something more serious is wrong with my baby?
Choroid plexus cysts are considered a soft marker for other potential serious problems in a fetus, most notably Trisomy 18. Trisomy 18 is a very serious chromosomal condition that is usually fatal in babies, and that occurrs when “a baby has three chromosomes in the eighteenth position instead of the normal two.” (A Trisomy 18 Journey, http://www.geocities.com/wilsfordmindy/trisomy18resources.html, 21, July 2006) Most babies diagnosed with this disorder are stillborn or live only minutes, days or weeks. Most do not even make it to their first birthday. You should be assured that cysts by themselves usually give doctors no cause for concern. In other words, if a technician finds a cyst on an ultrasound, he or she will then look for other soft markers to indicate a more serious problem with the baby. Babies with Trisomy 18 usually have several markers that show up on ultrasound, such as clenched fists, rocker bottom feet, cleft palate and heart defects. While these things can be detected on ultrasound, they can also be missed, so it is important that you schedule a level 2 ultrasound to get a more in depth look at your baby. A level 2 ultrasound will allow you to get a better look at your baby’s brain, heart, stomach and other vital organs that may be affected by Trisomy 18. Like I said, choroid plexus cysts alone are not enough reason to jump to the conclusion that your baby has Trisomy 18 and your odds of that being the case are completely in your favor. But other signs being present may be cause for concern and require other testing to be done. The only surefire way to diagnose Trisomy 18 is with an amniocentisis, which is recommended only if other signs are present along with the cysts. If a cyst is the only indication of a problem, the risks of getting the amnio done may outweigh the risks of there actually being a problem. So if your baby is diangosed with a cyst and nothing else appears to be wrong, the next step that you should take is to have a level 2 ultrasound done to ease or confirm your fears.
Another chromosomal abnormality that may be linked to choroid plexus cysts is Trisomy 21, which is Down’s Syndrome. However, most studies show that there is no solid evidence that this is an actual link, at least not as much so as Trisomy 18. Again, Trisomy 21, like Trisomy 18, will most likely have other soft markers on ultrasound that indicates a problem, so if your baby only has a cyst present and no other signs, chances are he or she is fine.
Note: Choroid plexus cysts never cause Trisomy 18 or any other chromosomal disorder. Rather it is the other way around.
What does it mean if the cyst goes away?
In most cases, choroid plexus cysts go away by the time you have your follow-up ultrasound, which was the case with me. I went for a level 2 ultrasound around 26 weeks and there were no signs of the cyst. However, some cysts don’t go away and may even still be present when your baby is born. If this is the case, rest assured that this does not cause any problems for the baby at all. In fact, adults can even have these cysts in their brain and have no symptoms or problems whatsoever. It’s not the cysts themselves that cause the problems, it’s what they can mean that does. If you go for your level 2 ultrasound and the cyst is not there anymore and there are no other soft markers present, then generally there is no other cause for concern and nothing further will be done. Chances are your baby is perfectly healthy and will be born so. But you should know that just because a cyst disappears, doesn’t mean that your chance goes down to zero of the baby having a chromosomal abnormality. Once a cyst is detected, your odds of that happening go up to about 1 percent. Whether or not the cyst disappears doesn’t erase that one percent. That being said, I would say that 1 percent is some pretty good odds and not much to be concerned about. If at the ultrasound the cyst is still present, the same still applies. If there are no other soft markers present, your risk is still at about 1 percent and does not increase because of the continued presence of the cyst.
If your doctor happens to find a cyst, the important thing is to not panic. I know, easier said than done. I will be the first to admit that I panicked, I cried and I thought the very worst, especially after doing the research on it. But like I said before, if the cysts are the only soft markers found the odds are definitely in your favor. Even if two soft markers are found, such as a cyst and a heart defect, this still does not mean for certain that your baby has a chromosomal abnormality. Ultrasound is not a diagnosis, it is just a way to assess your risks. I would also say that doing your own research can be a good way to find things out. Even though a lot of the research I did was very scary, I also was able to find various sites of mothers who have gone through the very same thing and had a positive outcome. Their stories really gave me hope and lifted my spirits, although they didn’t completely set aside my fears. One of the best websites to visit on choroid plexus cysts is http://choroidplexuscyst.org/. This site is pretty much a message board and support group for parents who have dealt with or are dealing with this right now. It’s very reassuring to know that you are not alone in this diagnosis and that there are a lot of other people out there going through the same thing. I guarantee once you visit this site, you will walk away feeling at least a little more reassured. Another thing you should do is talk to your doctor. Don’t allow them to blow you and your fears off. At that visit when my son was diagnosed with cysts, my doctor seemed so at ease and unconcerned about it and didn’t offer up any more information than he had to. At my second check-up I was determined to ask him every single question that I had and to make sure that he answered me in as much detail as possible. Your concerns about your baby should never be shrugged off as just paranoia, and any doctor who makes you feel that way is not worth your time. Your baby’s health is important and should be treated as such. Bring a list of questions and concerns you may have and request that your doctor sit down with you and talk about them. If they don’t address your concerns, look for another doctor who will. Also, if your doctor doesn’t bring up having a level 2 ultrasound done, request one yourself. He or she may tell you that you just need a regular follow-up ultrasound, but I strongly recommend that you make it clear that this is not good enough. A level 2 ultrasound has a higher probability of detecting potential problems than a level 1 ultrasound does. It may not be covered under your insurance and you may have to pay for it out of pocket, but in my opinion this is a small price to pay for reassurance on your baby’s health.
When I went for my level 2 ultrasound, I was relieved to know that the technician was taking her time looking at every single part of my baby’s body and every one of his organs. Luckily, the cyst was gone and there was nothing else of any concern on the ultrasound. Needless to say, I breathed a big sigh of relief. I am now in my eighth month and anticipating the day when I will have him. I can’t say that I still don’t have that horrible fear of something wrong lingering just beneath the surface, but it’s not as bad as when I first heard those words “choroid plexus cyst”. I think my fear will always be there until he is here and I can see for myself how healthy and perfect he is. Being told that my baby has a cyst is one of the worst things I have gone through, and it really took away from the joy and anticipation that I was supposed to be feeling in my pregnancy. Instead of being excited about his impending birth, I was wondering every day if I would have to say goodbye to him before he ever even got here. I was sad and scared everyday, rather than excited about the future. I’ve written this article as a way to help other expecting parents cope with the diagnosis of these cysts, and to let them know that they don’t have to be as scary as they seem. With the right medical care, information and resources you will be able to deal with this very uncertain time and still be able to enjoy the rest of your pregnancy.
