I’ve gone back and forth for weeks deciding whether or not to share this post with readers. I have been known to be honest and frank about opening our lives up and why anyone would care. The point is, it doesn’t matter to me if I am being too honest and sharing too much. I have learned that somewhere in the world someone is sitting in similar shoes as me sitting in the fear of the unknown, and I just might be able to give a little insight. So once again I ask that readers keep an open mind. I am also not a medical professional; therefore, any medical related information should not be considered professional advice.
In October I published a post called Prenatal Testing where I talked about the choice Dan and I made to have non-invasive prenatal testing done with our second pregnancy. I also talked a lot about how this pregnancy, at the time, was as scary as it was exciting for me. Shortly after my second trimester had started, I found myself relaxing more and really starting to enjoy being pregnant again.
The weeks that followed well into our second trimester would soon become another reality check in parenting that we certainly were not ready for…again. Going into our 20 week ultrasound, Dan and I were confident that everything would go great and that everything would be “normal.” Our only uncertainty fell on whether or not we would find out what we were having. We enjoyed all of the scan watching our next little kick and suck her thumb and turn toward us. We left knowing we would soon again be having a healthy baby girl. The ultrasound technician said, “everything looked perfect,” as she handed us our pictures to take home.
It wasn’t until the following week at my routine OB appointment that I learned of a small “hiccup” that was detected in the scan. I asked if everything looked good in the ultrasound. I recall my doctor’s words going a lot like, “Everything looked great, except…” And I froze. Except what? The tech said everything was perfect, so there should be no “excepts” here. A choroid plexus cyst was developing on our tiny baby girl’s brain. I stayed as calm as I could so she could explain what this was, but I was shattered inside. Like a sponge, I soaked up every last word she spoke. She must have known how this would hit me because she reassured me over and over that this can be a normal process in the development of a baby. She also said that they can dissolve on their own by 24-28 weeks, and in most cases do just that. “I don’t even want to have to tell you this,” she said. She was confident that this was an isolated cyst because everything else looked perfect on the ultrasound. Choroid plexus cysts have had a debatable history of whether or not they are soft markers for chromosome problems. Since Tessa has Down syndrome, the choroid plexus cyst was a red flag on this ultrasound. All I knew was that a cyst was growing on my baby’s brain, and I was nervous.
She knew when I left her office that I would be speeding home to Google. Like I did when Tessa was first born, I gathered up as much information as I could get my hands on. Because if there is one thing I have gotten real good at, it’s researching.
So here is mostly what I have learned. Almost everything I found said the exact same thing. However, I felt that this site said it best. Sourced from the Greater Baltimore Medical Center:
“The second trimester ultrasound examination (sonogram) will sometimes identify a cyst or cysts in the choroid plexus. The choroid plexus is a tissue in the brain that produces cerebrospinal fluid. Fluid-filled cysts, called choroid plexus cysts or CPCs, are identified by ultrasound in approximately 1-3% of all pregnancies scanned between 16 and 24 weeks gestation. In the majority of cases, CPCs disappear by the 28th week of pregnancy with no effect on the baby. However, a fetal CPC is considered a “marker”, indicating that the baby may have an increased risk for a chromosome abnormality.”
The cysts themselves cause absolutely no harm to the baby or its development during or after pregnancy. It is when other “flags” appear in an ultrasound paired with the cyst, that raises questions. My doctor told me in most cases, these cause more stress to the parents than anything else. Why? Because it sounds terrifying–a cyst on your unborn child’s brain. And the uncertainty that comes along with it. We decided to do a follow-up ultrasound to check on the cyst.
The five to six weeks we waited for the follow-up were worrisome and stressful, but we made it through. I learned fast to put my big girl pants on and be strong for myself, my husband and my baby. At the time, we decided it was best to stay private about all of this. We also knew that we would be fine no matter what the scan said. We knew our daughter would be perfect even if a piece of paper might suggest otherwise. We knew she would be loved deeply alongside her big brother and sister. It was an agonizing wait…similar to waiting for Tessa’s karyotype results after she was born. They read the ultrasound while we were at the hospital because I wouldn’t wait another day.
The cyst had dissolved on its own and everything had once again looked great. Of course we were relieved to hear, but it opened my eyes even more than they already were. These hurdles are placed in front of us so that we figure out how to jump over them. In hindsight it was a pleasant reminder of how strong my family really is, knowing that we can make it over these hurdles.
What can you do if you are told your baby has a choroid plexus cyst(s) on its brain?
- First and foremost–talk with your doctor and ask questions.
- Decide what options are best–whether it be additional testing or another ultrasound
- Research–read up as much as you can, but always keep an open mind to what you may read. Check out the message board at http://choroidplexuscyst.org/
- If you aren’t satisfied with information you have received, ask for another opinion.