Discussions By Condition: Brain conditions

need help

Posted In: Brain conditions 4 Replies
  • Posted By: Anonymous
  • July 5, 2006
  • 05:07 PM

I am 18 weeks pregnant and my baby has dandy walker malformation and i'm trying to find out just how bad this really is. my doctor told me to terminate but i can't do that and i really need some good info on this condition. Any help is appreciated. thnak you.

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4 Replies:

  • Hi I have found a website that looks to be very beneficial i hope this helps you.With sincerist regards,Samhttp://www.specialchild.com/archives/dz-021.html:)
    Anonymous 42,789 Replies Flag this Response
  • dear katsik123,My wife and I found out our baby had Dandy Walker at 20 weeks.Every baby is of course very different and DW comes in a very wide spectrum of outcomes.The most important thing you can do is find out what other problems may be present. DWS often accompanies other more serious problems.We quickly had an amniosentisis done, which confirmed our little girl was free of any other complications.if you are set on having this child no matter what - it is still better to be prepared.Because of our girls condition we had access to the best prenatal experts in japan . And neurologists were present at the birth in case of complications.She was born last week, still with a mega cisterna magna and an undeveloped vermis. Her health is good. There is of course the chance that ithe DWS will develop. But it could be worse. But lifes a gamble, isn't it.My best advice is seek help - if you the doctor you are speaking to doesn't know about DWS - or not enough - keep going until you do. You will find DWS experts out there.Good luck and take care,Richard in japan
    Anonymous 42,789 Replies Flag this Response
  • Katsik123hi i have just read ur msg on the site and i think were in the same boat am 26 wks and they told me the same thing as you when i was 18 wks since then i have been bac 2 the ossy 3 times for more scans witch have shown the same thing. it hasnt quit sank in yet apart of me is scared of the outcome but then at the end of the day this is my baby an i no i will love him anyway.
    Anonymous 42,789 Replies Flag this Response
  • Okay, I know that there is quite a bit of information on the web that can be quite scary, but I'm hope that my own experience can give you some hope. My daughter was diagnosed with Dandy Walker about 6 weeks after birth. When she was first diagnosed, I did research on the internet and was scared to death. And, I have no idea why it wasn't discovered during an ultrasound or anything, but don't really care at this point in time. She is now nearly 3 years old and doing absolutely great. So far as we can tell, she has no developmental delays (she knows here alphabet, can count to 20, can identify letters, numbers, shapes, etc.). She's small for her age but other than that completely "normal." She did have some heart defects (3 holes in her heart, 2 of which closed on their own and one of which was repaired by surgery), but those are all cleared up and we don't even have to see a cardiologist anymore. She does see a neurosurgeon once a year to check on her shunt, but other than that, we have no additional health or developmental concerns. I wanted to share this with you so that you know that there of children with this rare disorder who do not have all of those scary problems that you might read about elsewhere on the internet.
    Anonymous 42,789 Replies
    • August 24, 2006
    • 02:12 AM
    • 0
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