Cyst on baby's brain on ultrasound
Archived Q&A and Reviews
July 2002
I would love to hear the good AND bad on this one. Everything and anything you can offer!! FYI-this is our first baby.
On our 18 week ultrasound, the doctor diagnosed a single cyst on the baby's brain (choroid plexus cyst). My bloodwork was phenomonally GOOD - 1 in 10,000 chance for Trisomy 18 and 1 in 750 for Down's. We are 27 and 28, and neither of our families have histories of major medical problems. After meeting with a genetic counselor and reviewing this with 3 different doctors in my practice, we decided NOT to have an amnio. In fact, we were even told that the cyst is NOT anything to worry about, and that our pediatrician (when we picked one) won't even care.
Now I'm about 8 months pregnant, and we've met with a pediatrician that we like. BUT...it turns out that the cyst is a worry. It doesn't seem so much from her perspective as a ''birth defect worry'', but more of ''what is this cyst on the brain and how will it impact our baby's life?'' She would like to have a neurologist examine the baby and an ultrasound done as soon as the baby is born and take it from there. Of course we totally agree with her, but it's just hard to get fully excited about our new baby without wondering about the what-ifs. Like, what if this were fatal, and we were to lose our baby. It's very to scary to know that shortly after birth, our baby will already have specialists seeing her.
I would really appreciate hearing from other people that have been in this situation. The good and the bad. I'm hoping to find a little more info on what to expect. Thank you so much!!
worried mom-to-be
Hi, I read with so much sympathy your explanation that your doctors have found something unusual in the ultrasounds performed for you. I wanted to share my thoughts with you on this subject. While our child has a completely different condition from your child's, I think I may be able to offer some words of support and understanding that are applicable. My daughter has an unusual heart that was not diagnosed prior to her birth. It was an incredibly traumatic discovery that was made minutes after she was born, and led to our having a harrowing day and subsequent week in the hospital while they did tests and monitored her. What I am trying to say is that, while it may be a very frightening wait until the time your baby is born, try to take strength from the prior knowledge you have. This way you have time to gently explore (and potentially start facing down) all of the different potential outcomes of your child's condition. I know, it doesn't sound like much of a comfort, but I wanted to put out there that there is something to be said for having advance warning that there will be some testing and specialist visits in your child's (and your) immediate future. You can try to prepare, you can gather information, and you can inform those around you that you will be needing more support, encouragement, and understanding than you ! ev! er thought you would ask for from your friends and family. The other VERY important thing I wanted to say is to try not to focus on the negative possibilities, as tempting as it is. I was told on the day my daughter was born that she would need open heart surgery by her second birthday. I spent the next eight months thinking that my daughter would not survive, I became hypervigilant with her and watched her every move--in short, I couldn't allow myself to consider that things might not be so bad after all. Essentially, the only scenario I could envision was the worst possible one simply because I felt I couldn't bear to believe she would be okay only to have something terrible happen...Gradually, however, I opened up to the possibility that maybe things wouldn't turn out so bad--and I started living my life again...and now my daughter is three and a half years old, is symptom free, and they are now saying she might not need surgery until she is five or older. In other words, we have had a lot of time together and done a lot of livin! g ! together without surgery or other interventions. Good things can happen, even when you fear the worst. These are the two pieces of knowledge I have gained that I so much wish I had assimilated prior to the birth of my daughter, and that I hope will help you during this harrowing time. If you would like to dialogue further about navigating the hospital with a child in the neonatal intensive care unit or any other aspect, please feel free to email me. Good luck.
Elizabeth
My youngest son (of three) had this, too. I opted for an amnio at that time. The doctors told me that the cyst is usually dissolving while the baby is still in utero. They also told me that they are seeing more of those cysts these days (also in other organs) and they attributed it to better ultrasounds (that was 1995, btw.).
After my son was born, a doctor from my pedriatic group (not my regular doctor) checked him out, and I reminded her about the cyst. She ordered an ultrasound which was taken before we left the hospital. I went with my son and held him while they moved this u/s-wand over his fontanelle. It wasn't a big deal at all. The cyst was still there and I was somewhat worried. At that point my pediatrician (Dr. Cuthbertson from Berkeley Pediatrics) talked to a neurologist (I think) and then told me to have another u/s when my son was 6 months old. It also helped that my son was an extremely easy and happy baby and I knew he wasn't in any pain, and since he was my third I was also quite experienced and knew of all ''normal'' newborn behaviour.
For his 6month u/s we went to Children's Hospital. They could barely perform the procedure because his fontanelle was on it's way to closing. The cyst was still there but smaller, and that's when the pediatrician decided not to worry about it anymore - especially since the child didn't develop any other symptoms.
Around the same time a friend of mine went through the same thing. She decided against an amnio and has a healthy 6-year old daughter today. She had an u/s shortly before giving birth which didn't show the cyst anymore! If she hadn't had an u/s at 20 weeks nobody would have suspected anything! Go figure. Good luck! Susanne
This is in response to the worried mom-to-be whose baby was seen to have a choroid plexus cyst during the 18 week ultrasound. My husband and I had this experience as well. We now have a healthy five year old son.
Because I was 40 when my son was born I had already planned to have amnio. We had some very anxious days waiting for the amnio results. Happily, they were normal. My doctor then did a follow up ultrasound. (This was about six weeks after the amnio, I believe.) The ultrasound indicated that the cyst had resolved itself. We had another ultrasound after my son was born. Again, it showed that the cyst had resolved itself.
My son is healthy, very bright, and well adjusted. His only abnormality is that he has two webbed toes on each foot. This is a characteristic that runs in my family. One of the articles that we read about CPC had a footnote that suggested some possible connection between CPC and webbed toes!
At the time of the first ultrasound, my husband posted on the Harvard website: http://neuro-www.mgh.harvard.edu/neurowebforum/ ChildNeurologyMenu.html. In response to that post, he has heard from three anxious mothers-to-be whose ultrasounds showed CPC. Happily, all three of them have had healthy babies.
I remember the uncertainty about what the CPC really meant for my child. He is completely fine. I trust your baby will be as well. I am happy to answer any questions you may have. Feel free to contact me if you want to talk.
jdelaney
My baby (now 1 year old) had 2 choroid plexus cysts on an 18 week ultrasound. My AFP results indicated extremely low risk of any trisomy. Due to my age at the time (34) I elected to have an amniocentesis (fortunately it was normal, but it was extremely anxiety-provoking; I don't think I would do it again). The genetic counselor and perinatologist advised us that if the baby's chromosomes were normal, there would be NO need for any follow-up of the cysts - - they typically disappear by about 24 weeks. I consulted a second perinatologist and radiologist, as well as a pediatric neurologist, all of whom informed me that in a baby with normal chromosomes, choroid plexus cysts usually disappear in the 2nd-3rd trimester and it is unknown if they are clinically important.
I would suggest speaking with the pediatric neurologist now to find out more about potential risks in your specific case. You may also wish to take a look at the website www.choroidplexuscyst.org - - I found reading much of the information there helpful and reassuring.
Congratulations on your baby!! Julie's Mom
My husband and I are both physicians. Our second son had a choroid plexus cyst found at early ultrasound. We asked every perinatologist/radiologist/pediatrician we knew what we ought to do. We did end up having an amnio (but I was over 35 at the time anyway). The amnio was fine. The radiologist offerred serial ultrasounds but we didn't choose to do them (choroid plexus cysts are seen frequently, one of those things radiologists found out once ob/gyns started screening so many people). Our pediatrician (with years of experience) didn't recommend further ultrasounds/mri's/neuro evals and I agreed with her. Why drive yourself crazy with ''what could be?'' I think your baby will be fine. Mine is now a dynamic 4 year old who's off the charts in most everything. If he/she has problems you'll know it soon enough. You may drive yourself nuts in the meantime if the cyst is still there (since there's not a darn thing you can do about it except worry and it probably won't interfere with his/her development at all). In the meantime know that something can always go wrong. It probably won't. Try not to dwell on the what if's. And try to focus on the what is's. kj
Boy do I feel for you! Almost the same thing happened when I was pregnant 3 years ago with my son. At 16 weeks the ultrasounds detected a cyroid plexus cyst and we were thinking the worst for an hour until our more detailed ultrasound with a specialist. The specialist literally said ''don't loose any sleep over this'' and mentioned that she has never seen it turn into a negative outcome. We chose not to have an amnio as well and that decisions was supported by the genetics consultant. (we had Kaiser at the time). So I did some research and learned that it was a normal part of development and that the cyst should disappear in a few weeks. But when my due date came around, I began to worry. Not that I had a reason to because all the exams and ultrasounds never showed anything that alarmed anyone. Once my son came out I looked at him, saw he was ok and never thought of it again. It happens to a lot of people and you may have found lots of websites about it already. I hope you can put your mind at ease. It is hard being a first time parent and faced with all these very real and very scary situations. One thing I learned from being a parent so far is that all that there is so much that is out of my control and I have to learn to not let all the ''what if's'' stress me out. There are so many things about having a baby that are going to be not what you expected, good and bad. From what I have heard there is almost no reason to worry about the chyroid plexus cyst and the doctors would have found another marker for Trisomy if there was one. Good luck to you! Hadley
My son, who is now a totally smart healthy soon to be 4 year old had choroid plexus cysts also when we had our first ultrasound. I first found out when I got a message on my machine a few days after out ultrasound by a doctor at Kaiser saying your baby has cysts on its brain give the genetics counselor a call for more information. That was it...of course I was in tears until I talked to her, what she said is that choroid plexus cysts are actully quite common and totally harmless in and of itself, there are many adults walking around with them and they cause no harm. The only reason a red flag even goes up is because babies with trisomy 18 and Downs have a much higer rate of having them. So we too, like you had the level II ultrasound which was fine and the AFP test which was normal and decided against an amnio. We decided to have another ultrasound at 27 weeks because they said often the cysts are totally gone by then and we were curious(though we told ourselves if they were still there we wouldn't freak out)and they were gone. I think your Dr. is totally uniformed and wrong for scaring you like that, because we were told after the level II and AFP that we had nothing to worry about, in fact they were fine with me having a home birth so I know they had no worries anything could be wrong at that point. Get another Dr. or at least another opinion, try not to worry and good luck. If you need to talk any more about it feel free to e-mail me. bellkeating