I had my level 2 ultrasound today, and all did not go as planed.
I was told by the genetic counselor that my dd has a tumor on her brain called a Choroid plexus cysts. What does that mean sounds preety frightning tears streaming down my face. She says usally this kind of cysts are found on mostly babies with trisomy 18 and sometimes Down Syndrom. She said everything else on my daughter looks fine. She did not find any other abnormalities.
The chance of my dd having one of these chromosonal disorders is 1%
Why Why Why ?? did I allow myself to go thru this testing. I thought that an ultrasound would be a good idea because I wanted to know that my daughter was 100% o.k. Unfortunatly I did not get the results I wanted to hear.
Has anyone else gotten a diagnosis like this and what was the end result??
My diagnosis wasn't exactly the same, but I was told that dd had "fluid in her brain" during an ultrasound. It actually led to another ultrasound a MONTH later--the waiting was hell--and this time they were inconclusive, but in the end dd came out perfectly fine and beautiful. I'm sure that you are feeling very confused and scared right now, but just try to think positively. 1% is not a very big risk. You are in my thoughts and prayers, dancinggirl (love the name, mama). Hang in there and everything will turn out all right. (((hugs)))
A cyst is not a tumor. A tumor is uncontrolled cell growth. A cyst is a pocket of fluid. So don't confuse the two and let it cause you needless stress. And based on that article and what you said about there being no other signs of defects, your baby is probably going to be just find and there's nothing to worry about, it's just one of those odd things that crop up in otherwise NORMAL fetal development and won't cause any problems down the line. So you really haven't got anything to worry about since nothing else showed up on the ultrasound.
DS#1 had two of the same cysts on his brain and of course they drag you in for genetic counseling to give you all the gory details that are generally pretty pathetic.
These cysts are found in 1 - 4% of all babies and you have a less than 1% chance of having a baby with either Trisomy 18 or 23 (down's syndrome).
I was completely not planning on having either the AFP or the amnio done with my first pregnancy but after they found the cysts I agreed to an AFP. It came back negative so I decide to forgo the amnio which is what ALL doctors push after they find the cysts. To me it seems almost as if these doctors want to give you reasons to have an abortion.
DS #2 also has the same cysts on his brain with the same negative results from the AFP. I refuse to do an amnio with him either. This time I was told by the genetic counselor that these tests can be a genetic occurance all on their own which would explain why both my boys had them.
As a side note - a friend's aunt had a Trisomy 18 baby and it did not have the cysts on its brain. Soooooo - tell the doctor's to "bite a rock."
Two babies on my birth board had this and were told this was somewhat common, and their babies turned out to be just fine. A third person on the birth board had that in one of her children who was born normal and is today a healthy toddler.
If Trisomy 18 were present there would most likely be other indicators as well. I had a friend with a Trisomy 18 baby and she had heart problems, cleft lip, and mulitiple digits. Just the cyst alone does NOT point to Trisomy 18 and most likely it will go away on its own and your baby will be born perfectly healthy and normal.
I will put a call into my Dr. first thing in the a.m.
The more stuff I read the better I feel. But their was a strange thing that was going on during the ultrasound. They keep on trying to get her to open her hand. She would not open it, then when she did she closed it right back up. So that makes me very very nervous because that is also a sign.( Clenched fist) I tried very hard to find a deffinition for clenched fist but alls I could find was MIRs of fetuses and what a normal hand looked like and a baby hand that had trisomy 18 looked like. And the deffination: to punch, the tecnician keep refering to the closed fist. When I asked the counslor about the closed fist she said she did not see anything or was aware of that. I will just have to get a thourough walk thru of this ultrasound with my Dr.
Alls I have to say is that with this tiny shred of possiblity that my dd has trisomy 18, I WISH that I was a much much stronger person.
I dont know about the cysts, but I know about the pain u/s can cause. I had an u/s at 17 weeks last pregnancy. I had a baby 6 years ago who died of a birth defect so we were checking to make sure everything ws fine. Well my baby had a single umbical artery, same thing my dead baby had. I freaked! IN adition, my baby also had a circumvallate placenta. I was sure I would never hold my baby in my arms, I went thru an entire pregnancy never believing I would have a live baby in the end. I contimued to have u/s, that showed no other abnormalities, so the chances were good everything was fine.
BUT the stress of it all was too much for me. I dont know how I got thru it. So now I have mixed feelings on u/s. It is a scary thing, you go in thinking they will tell you everything is fine, but then you get news like this.
I think in my case it would have been way better not to know.
Most likely your baby is fine, so try not to worry. Ok, I know that is almost impossible, but chin up! ((hugs))
I am sooooo sorry. With me, it was the AFP test -- my OB gave them the wrong date of my child's development even after I told him the right one, and I didn't realize how crucial the *exact* date was for this test. We ended up with a false positive for possible Down syndrome.
I am usually against medical intervention, but you may wish to consider an amniocentesis or a chorionic vilii sample, either of which will give you the EXACT genetic information about your child, including whether it has trisomy 18, 21, or 23. At the very least, it will ease your mind. At the very most, it will help you prepare to make decisions. There is a 2% miscarriage risk, however. On the other hand, not all USs catch every marker for Down -- some 13% of Down babies whose moms had ultrasounds were not detected prior to birth. Some surprise.
I wish you and your family well and hope everything is all right.