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Marla, 11 years ago I had a beautifil baby girl, I was 30. She had 2 cysts on one side of her brain and a larger one on the other. She had no other markings...and the waiting for the amnio results were terrible. The cysts went away just as the doctors said and today she is the most beautiful and sweetest little girl in the universe!
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OMG! Am I happy to have stumbled upon this thread:) I just turned 30 recently and I am 20 wks. pregnant. On Monday I had my u/s and a cyst was found in my baby girl's brain too....not ever hearing this before, my husband and I were very concerned and emotional. This is baby #4 for me and I have never gone through something like this before. My Dr suggested I get a triple screen test (blood test) to rule out Down's, the bad thing is that if it comes back positive it could be a false positive. I have decided already not to get an amnio done. I see my specialist in a few days and hopefully he has some positive information. After doing some research on the computer I have decided that I am not going to worry about this or let it ruin my pregnancy. It gives me comfort knowing that others are and have gone through this, but what I don't understand is, why the worry if they pretty much always disappear??? I hope to go for another u/s too and pray that my baby will be fine.
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Choroid plexus cysts are very complicated. Just to give you an idea of some risk a__sociated with the finding and trisomy 18. For a 20 year old - the risk of trisomy 18 is 1/4576 (<1%) with the finding of an isolated (nothing else) choroid plexus cyst the risk becomes 1/725 (still <1%) for a 35 year old woman the risk of trisomy 18 is 1/1420 (<1%) and if choroid plexus cysts are found with nothing else the risk becomes 1/39 (2.5% - keeping in mind that is still a 97.5% chance the baby does not have trisomy 18). The majority of babies with choroid plexus cysts are fine and they usually go away.
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You all are awesome! Thanks for the details and responses...it really helps! Now maybe I can concentrate on not being able to walk gracefully, being exhausted, and growing huge like a normal third trimester mommy!!!! (Big belly's rule!) God bless!!!
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I'm so thankful to have come across this site!! I'm 21 weeks pregnant with our 4th child (our 1st boy) and was told that he has a cpc on each side of the brain. He also has one slightly dialated kidney. We were reffered to get a more in depth u/s where they didn't find any other markers of anything wrong. Feet, hands, bones, heart, everything else was normal. We go back in 4 weeks to follow up on his kidney. We have decided to not do an amnio for now. I'm wanting to know can the kidney dialation be more common in baby boys? has anyone else had both of these pop up in an u/s?
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On our first ultrosound at 18 weeks my husband and I found out we were having a girl, we were on top of the world with excitement, which was quickly turned into a gut wrenching feeling as we were told that our daughter had 3 choriod plexus cysts, and she also had hydrnufrosis, dialated kidneys, which together was a strong marker for Trimosy 18, we were devistated, I refused to take an amnio, I looked my Doctor straight in the eye and said I don't believe in abortion, so what's the point!
I was so upset and in my natural stubborness, I leaned on my faith and refused to believe that there was anything wrong with my daughter!
I decided to switch Doctors, and by the time we had a second ultrosound at 25 weeks, her choriod plexus cyts were gone, and the amount of fluid retained in her kidneys was improving!! We were so thankful, God truly answers prayers!! By the time she was born her kideys were practically normal, she is now a healthy, independant, sweet, sa__sy, amazing 3 year old, with a future full of hopes and dreams.
I wanted to share my story because I recently read a story from a mother, called "Losing Ava" her daughter was diagnosed with the same thing as Madison, choriod plexus cysts and dialated kidneys, she however chose to have the amnio, and was given the diagnosis of Trimosy 18, her story does not have a happy ending, she chose to end her pregnancy at 20 weeks!
My heart greives for her and her loss, I am not here to judge her or her decision, I simply want to reach out to anyone who may be considering that option, who may be feeling like there is no hope....
Stand up, and believe, there is hope, lean on your faith, pray everyday, and the most important thing of all, CLAIM IT, believe it, Jesus answers prayers, walk around everyday and declair it, my baby is healed!! As for me I refused to believe the "diagnosis" those words to me, felt like a lie from the pit of hell, and that's exactly what they were!
Place your fears in God's hands he will give you strength!
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Kelly, thanks for sharing your post. It's wonderful that your story has a happy ending. I don't believe anyone in the medical community would allow any type of decision to be made without an amnio (or a CVS if you are able to have an earlier test) being done to provide confirmation (although, obviously, that had risks also). There are other medical options out there for those who need more information and confirmation , although prayer never hurts either!
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I just want to update...went for a repeat u/s today and tech could not see the cyst...she said they are more common than you think....baby measures perfect...no other markers...I feel soooooo relieved!!! I am 21 weeks 2 days.....so hang in there everyone...lots of positive stories!!
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When my daughter was diagnosed with choroid plexus cyst and dilated kidneys, the only way I could deal with it was to turn away, lean on my faith and just believe that she would be fine. She is now a perfectly healthy 3 year old. When I read this story called “Loosing Ava”, my heart literally cracked. I guess it just hit so close to home. I thought about her for days, could it have been a mistake? Could the tests have been wrong? In searching for the answer, I’ve educated myself a little more on this subject, a subject that I wasn’t able to face before. I am so glad that I didn’t do any pre-testing, from what I’ve learned, the percentage rate for false positives is very high……….here is some info I found on the AFP test and the link…….. Info on AFP found at: www.pregnancy.about.com/cs/afp ............... AFP (MSAFP & Triple Screen) for neural tube defects and Down Syndrome. This simple blood test has many false positives and the results may be misleading. The controversy in these tests lies in many places. One of which is the accuracy of the screenings. While some claim that they have only a 5% "false positive" rate, most research finds that there are 80+% rate of positive tests while the baby is unaffected. The false positive rates depend on many factors, including appropriate gestational age, maternal age, weight and the presence of diabetes.
False positives may not seem like a problem, however, there are follow up tests that are done that do carry risks, like amniocentesis, which does carry a 1 - 2% rate of fetal loss.
Of the positive test results, 90% of these babies will not have any anomalies. There may be other benign reasons for the elevated or low levels of the hormones, specifically the gestational age, or multiple pregnancies. The AFP test is generally done between the 16th and 18th weeks of pregnancy, while the triple screen can be done a bit earlier. The gestational age is very important, because the amount of hormone in your blood will vary with gestational age.
Info on CVS found at : www.genesoc.com
• Most birth defects cannot be detected by CVS or amnio. (Amnio can detect about 10% of birth defects). For example cleft lip, cleft palate, congental heart defects, and many types of mental retardation will not be detected.
• CVS doesn't routinely test for heritable disorders such as cystic fibrosis unless there is a risk for a specific disorder and a special test is ordered.
• CVS does not test for whether the fetus has a neural tube defect (ie spina bifida or anencephaly
• About 95% of women who undergo a CVS will have a negative test result. However, a negative test result from CVS does not guarantee a healthy baby. (3-5 out of every hundred babies have a birth defect).
• There is a 1-2% chance that the test will be inaccurate (reasons for this will be discussed later)
1 out of every 100 women who have CVS will have a miscarriage that is due directly to the procedure.
• With CVS there is a greater likelihood of needing further testing due to
o Laboratory failure
o Maternal cell contamination
• Frequency 1.9%
• Not problematic for cytogenetics because they do maternal karyotype also, can be problem for DNA or biochemical testing
o Mosaic or ambiguous results
• Presence of two or more groups of cells that differ in their chromosome make up
• Occurs in 1-2% of CVS samples
• less concerning in CVS than amnio because the placental cells are more distantly related they split off from the cells in the embryo early on so fetus might not share same genetic make up
o Insufficient sample
Research yourselves, find your own answers....I hope and pray that everyone has a healthy baby and happy pregnancy, God Bless!
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So, Kelly, what are you trying to say? That you think there is something wrong with my baby?
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K.J. .......I would never suggest such a thing, I’m sure your baby is absolutely fine, along with every single baby that has CPC’s, I am only trying to shed some light on just how confusing and contradictory all these pre-natal tests and “soft markers” for this and that really are. And encourage you to research for yourselves, ask your doctor, hey, ask two doctors, or even three, why not? Look at the data, The AFP test has (triple screen Quad screen) has a false positive rate of 80%, according to what I read, which is why they call it a “screen”, all it does is scare women into taking more invasive testing like an Amnio or CVS, (which, I’m happy yours turned out fine) but, the statistics are clear: 1 / 100 women will miscarry, the same is true for the amnio 1/ 100 will miscarry. Just like I read in an earlier posting, 5 years ago CPC’s were not an issue technicians even looked for. So my question, since the finding of CPC’s and all the false positive test results given to expecting mothers, I wonder how many mother’s took the next step, encouraged by their doctor, and lost an otherwise HEALTHY baby?......How many women in the year 2004, miscarried due to invasive pre-natal testing compared to 5 years ago?..........I really just would like to encourage everyone to stay positive, I KNOW it’s impossible to tell an expecting mother that her baby has a cyst on her brain but don’t worry……..I think I could have dealt with anything other problem than that, I mean we’re talking about her brain!! I’m sure everyone that has heard those words knows exactly what I mean!! I guess I have just a little bit of a chip on my shoulder when it comes to all these, screens and soft markers………
I know that the accuracy rate for an amnio is 99%, which is a wonderful thing, but, this black cloud of screens and soft markers, seems to be growing and scaring more and more mothers into having the test and, well, …1/100 babies will pay the cost. And that breaks my heart!!
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None of those screening options were ment to give definite answers to women about whether the baby has Down syndome or other chromosome abnormalities or not. They were really developed to try and figure out which women might be at an increased risk and therefore offered additional testing. It was not originally intended for women over the age of 35. Women over the age of 35 are already at an increase risk for chromosome abnormalities, so it is not suprising that a screen which identifies "at risk" individuals would be very likely to come back positive for those women (especially those closer to their 40s). It can be scary, but please understand that these screens just give someone an adjusted risk. Most labs consider a result "positive" or abnormal when the risk is around 1/250 for Down syndrome or 1/100 for Trisomy 18 (depending on the lab etc). So keep in mind that even that number which is considered "abnormal" is giving a .4 risk of a child with Down syndrome or 1% risk of a child with trisomy 18. So yes, 99% of those babies will NOT have one of those chromosome abnormalities. These tests are a good tool if they are explained properly. Genetic counselors are a great resource which can explain all the testing options and results (it's what they do). Many doctors can be directive and do tests or make suggestions without really giving the patient the choice. It is always the patient's choice do tests such as quad,triple, or first trimster screens, CVS, and amnio. If you would never consider an amnio or further testing, many of the screens can cause more anxiety for some people. And the do only screen for up to 3 conditions (Down syndrome, Trisomy 18, and open neural tube defects). It is a lot to think about. Good luck to everyone with their pregnancies!
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I'm hope that some of you are still reading and posting to this thread! I am currently 18 weeks pg with my second pregnancy. My 1st pregnancy resulted in the loss of my beautiful twins who were still born at 23 weeks last October. I miss them everyday but I am thrilled to be pregnant again and I try to remain hopeful for a better outcome this time. Everything was going well...my first trimester screening (bloodwork and nucal translucency) came back great...1/2500 chance of Down's and a 1/1800 chance of Trisomy 18. I had an ultrasound last Monday and they found a CPC and a "bright spot" on the baby's heart. Also known as echogenic intracardiac focus. This means I have two markers. I know that the risks of a real problem with one marker is very low, but from what I've read, the risks go up significantly with two markers. Has anyone out there had two markers and no chromosomal problems? I did elect to have an amnio, so I'll know for sure next week. I'm just going crazy while I'm waiting. thanks so much, Carrie
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It is definitely possible to have a baby w/ two markers and no chromosome abnormalities. The serum screening is encouraging, but as you said only tests for 2 chromosome problems. I hope all goes well!! Good luck. Be sure to let us know when you get your results.-Megan
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My thesis website was mentioned in one of these posts. The URL has changed since then. It is now
http:www.expat-at-large.com/thesis/Content.htm
"A long dry read", but it has been helpful to some and may be to others as well.
cheers.
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Hi Phillipp,
Thank you for posting the link to your research. I did read through it and found it quite helpful. I have a question...I noticed that you didn't list Echogenic intracardiac focus as a "soft marker". Is that because it isn't a__sociated with T18? Is EIF a__sociated with T21?
thank you!
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