Dandy walker malformation - Mothering Forums

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Old 01-16-2013, 06:02 AM - Thread Starter
 
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I am new to this thread but i don't know where else to go. At 20 weeks pregnant i was told that my baby had possible dandy walker malformation. My baby boy is missing his vermis and has an enlarged cisterna magna and a posterior fosse cyst. He also has clenched fist. I took the matern21 test to rule out trisomy 18 and it was negative. Now i am just dealing with the dandy walker. Im very nervous. I go back to the dr in 2 weeks. Does anyone have Any positive stories? The outcomes are so broad n i want to keep holding on to being positive. Any advice or stories or anything is very appreciated!!
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Old 01-16-2013, 08:05 AM
 
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I had a very similar experience. My baby girl was diagnosed at the 20 week sono, we watched in horror as her cyst continued to grow throughout the pregnancy. We saw 2 neurologists and 2 neurosurgeons, all who seemed to have different opinions. One even suggested we terminate. My baby girl will celebrate her 1st birthday tomorrow and couldn't be more perfect or bring us more joy. She has hit each milestone and everyone agrees now that she most likely will live a completely normal life. The brain is a very mysterious organ, capable of rewiring itself around the faulty areas. That combined with how little is known about DW leaves a huge range of possible outcomes for your little one. To be searching for answers, you obviously care a great deal and will make a wonderful Mom. God bless you both.
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Old 01-16-2013, 08:10 AM - Thread Starter
 
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Were you missing the vermis? Any hydro? Im so happy to hear of your story! Im considering getting an mri to get a valid prognosis.
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Old 01-20-2013, 06:01 AM
 
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She wasn't missing her vermis but it was very thin and there was no hydro, her ventricles were not dialated. I would definitely say go for the MRI, it's 100% safe for you and the baby and is usually a much better picture. They weren't able to fully diagnose my daughter until after I had an MRI at 24 weeks. After that, they continued to monitor the cyst and her ventricles with weekly sonos.
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