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Info PLEASEI am 25 weeks pregnant and we were told that our son was diagnosed as a dandy walker variant baby yesterday. He is missing the vermis and has no other symptoms as of now. All of his organs are working perfectly and as of right now he has no hydrocephalus. At first we were told he wouldnt live, but when I went for a 2nd opinion they told us he could be perfectly it would just depend. We wouldnt know until he got here in November. Is there any advice anyone can give we were devastated at first but after getting the 2nd opinion we feel so much better. I would just like some advice and maybe some information, organizations and all that. 4 comments to Info PLEASEYou must be logged in to post a comment. |
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Hello,
I’m glad you got a second opinion!! Many children born with Dandy-Walker variant do very well. There is the possibility that your son may have some challenges with things like motor skills and balance but the good news is if those things develop there is help available. The fact that he doesn’t have any other congenital conditions is good news too! Many families of kids born with DW get services like physical therapy and others through their states early intervention program. Therapy, started early on, has been very successful in help children with different types of developmental delay. You should also know that there are many adults out there with DW that are doing things like going to college, holding down good jobs and raising families, its not always bad. In my experience from talking to other families a small percent have severe problems, others have none at all and the majority fall somewhere in the middle.
As far as organizations go the Dandy-Walker Alliance is the only non profit organization that currently exists for Dandy-Walker. Other organizations that may be helpful would be your states early intervention program, check with your local school district to get the local info. Just being diagnosed with DW will put your son at risk for developmental delay and that is usually all that is needed to qualify for services once he is born. If you happen to have facebook we have a large community of DW families there. Its a very active group where families share their stories and exchange information. You can find the link at the bottom of this websites homepage. If you have any specific questions please don’t hesitate to post them here, email us directly at terri.eldridge@dandy-walker.org or give us a call at 877-DANDYWALKER.
My Daughter was born with Dandy-Walker variant. We were told the worst and abortion was not an option for us. When she was born there was none of these sites and I had to explain to everyone what she had. She is now 12 yrs old and is beautiful. We had our tough times. She was delayed in most gross motor skills but not extreme delays. She got glasses at 18months old to help her see but She other wise has developed normally. She is in age appropriate levels at school and does average. She does have an immune system that stinks she’s had pnemonia twice and been hospitalized. She has had only 1 shunt revision since it was placed at 3months old and the revision was at 9yrs old. Today doctors can do so much. You can handle it and I hope all the bes for you and your family.
Our son was born in January 2010 and in the womb had been diagnosed with DW at the 22 week scan. This was obviously very hard to take at the time. I must admit that my wife managed to put it to one side and soldier on much quicker than me. It took me a few weeks, if not months, to get to grips with the anger and the why us questions. On the day of his birth we were obviously worried that he’d have to be taken away and operated on quickly, but thankfully this was not the case and he was straight back up to the room with us. He is now over 6 months old and thankfully no action has been required to date. You would never know he has a problem as he is making great, great progress and is so beautiful with a lovely bubbly, smiley personality. Of course anything can still happen as he is still very young and we would expect a shunt to be required at some stage, but we do realise that we are very, very lucky. We would not swap him for the world, he is magnificent. Anyway, just wanted to leave a positive story for those of you out there who have just got the same news we got last year. As you will see on this website, it is not the end of the world. We have a beautiful baby boy who we love very, very much and has made us so, so happy. Dublin, Ireland.
Hello there.. I was just wondering how everything turned out??? I just found out last week that my baby girl has Dandy walker malformation.. There is a large gap between the two sides of her cerebellum. In between the sides there is a cyst present. I am 23 weeks pregnant so it is too early to do an MRI at the top of the brain but everything else appears to be normal. I would just like to know what is up ahead and the doctors cant give me any answers..