Uhhh, talk about a major freak out as she's explaining the cyst and all the scariness that could go with it using only the biggest terms possible. Thank God Clay was there to hop on his phone and start deciphering what she just told us. For family and friends who are curious, I'll save you the trip to Wikipedia:
What is a choroid plexus cyst?
The choroid plexus is the area of the brain that makes fluid to protect the brain and spinal cord; this area does not involve thinking or personality. When a tiny bubble of fluid is pinched off as the choroid plexus forms, a cyst is created. This occurs in 1-2% of babies during the 16-24th week of development. Thankfully, choroid plexus cysts are NOT harmful to the baby and they nearly always go away by the third trimester.
When choroid plexus cysts (CPCs) are found during an ultrasound, the tech will carefully scrutinize every organ and body part to look for other abnormalities, such as a deformed heart, head, hands, feet or stunted growth of the baby. If no other abnormalities are found, the diagnosis is called an "isolated CPC."
Baby Arch has an isolated CPC... as far as we know.
CPCs have become associated with a severe genetic disease called Trisomy 18. The vast majority of fetuses with isolated CPCs are completely normal, but when CPCs are seen, the chance of Trisomy 18 goes up (the risk is 1 in 300.) Fetuses with Trisomy 18 have an extra copy of chromosome 18, and frequently, are stillborn. Survivors beyond infancy are rare. Survivors have severe mental retardation and a variety of other problems including abnormalities of almost any organ system such as the heart, brain and kidneys. Fetuses with Trisomy 18 have choroid plexus cysts about a third of the time. Therefore, when a cyst is detected, there's concern it could be linked with the disease.
What's next?
The next step for us and Baby Arch is to have a Level II ultrasound which is scheduled for August 8. There's a chance that by then, the cyst will have gone away on its own. I've also read that a normal alpha fetoprotein (AFP) test further reduces the likelihood of Trisomy 18. However, I have no idea what that test is and haven't discussed anything further than an ultrasound with my OB. If the cyst is still there during the ultrasound, an amniocentesis can be performed to verify if there's an extra chromosome 18. I am, however, extremely against having an amnio due to the miscarriage rate of 1 in 250. Most experts, on the topic of CPCs, suggest not getting an amnio because they wind up losing more normal pregnancies... than you will find Trisomy 18 babies.
An unsuccessful second ultrasound can also bring on the "wait and see" game. Generally, doctors will track the progress of the fetus through several follow up ultrasound exams. Most CPCs will resolve on their own by the sixth month of pregnancy, and a definitive exam of the baby's health can be made after the birth.
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| Baby Arch - 20 weeks |
Phew. It's such a weird feeling to go from the relief that you can see four moving limbs and a wiggly baby on the ultrasound to hearing that there's a problem. Even though the chances of the CPC not resolving on its own are so very small, it's emotionally draining to sit here and think about it. My heart goes out to mothers and families who find out much worse things. So yeah, for the next three weeks, I will
7/24 update: Thankfully my sister works at the Helen DeVos Children's Hospital and has an unlimited supply of doctors and specialists at her disposal. The day after we found out about the CPC, she spoke to a pediatric neurosurgeon at work. She said he was immediately a little frustrated that doctors even have to tell patients about CPCs at all. He said the odds of them going away by the end of the pregnancy are so great that it causes "a lot of worrying over nothing." HA! Obviously he's not a pregnant woman. My OB said most go away by week 24 and the neurosurgeon said probably not until week 36. So I guess I'm going to prepare myself that it still may be there at my next ultrasound... and that I shouldn't be any more alarmed.
Hang in there! Good baby vibes abound.
ReplyDeleteAndrea, I know exactly what you're feeling. They found a Chorid Plexus Cyst on Stella's brain at my 20 week ultrasound. We had the level 2 ultrasound about a 2 weeks later, and it had resolved on its own. We continued to have a ultrasounds every 4 weeks until Stella came to term.
ReplyDeleteMy OB said that she really wished that she didn't have to even tell me, because almost always in mothers under 30, the cysts resolve on their own. And hearing that your child could have Trisomy 18 is so hard and causes so much anxiety. She also added that Chorid Plexus Cysts are actually pretty common. And are diagnosed more now days, not because more babies have them, but because the technology has advanced so much and they get a more detailed ultrasound. And doctors are obligated to tell you anything out of the ordinary.
I just wanted to share in hopes that it might calm your nerves a little. Hang in there! I know the 3 weeks will feel like the longest in your life. I'll be thinking of you.
Thanks Jamie, it's comforting to know that someone I know has been in this same situation. It's too bad doctors even have to tell us about things that have such a small chance of being anything of significance but can cause so much anxiety! I think things like this have to happen to parents (especially first timers) so we can develop a thicker skin and prepare ourselves for a lifetime of worrying! Thanks for the support and for calming my nerves... I really appreciate it!!
DeleteMy daughter had the same thing. We didn't want to chance the amino either, so we just had faith that everything would be ok. Luckily it was. Will be sending positive energy your way for a happy resolution!
ReplyDeleteJosh and I will be praying for you, Clay, and little baby Arch.
ReplyDeleteSending you lots of mental hugs right now.
ReplyDelete