What Causes Dandy Walker Syndrome?

Dandy Walker Syndrome
#1

Is it genetics?

When I was pregnant with my son, he was diagnosed with DWS 18 weeks along in pregnancy. Two weeks later he passed away. My doctor said the DWS was just a fluke, and I shouldn’t worry about having the same thing happen in the future pregnancies.
Well, I did get pregnant again with my daughter Annika. She is as healthy as can be. As you can imagine I was worried the whole time I was pregnant with her and so thankful when she had nothing wrong with her. I just found out I’m pregnant again yesterday. This is my fourth pregnancy and I’m sick with worry that he/she will have DWS.

I know it’s rare but don’t those who already have had kids with DWS more at risk?
Does anyone know where I can find some information?

#2

Hi, some say that genetics play a part. I did read some whee that it usually happens in 1 out of 4 cases. However, I am not a Doctor and do not know. I have it. However, my children do not. Two of my children have got other disabilities though. I do believe that there are a lot of unanswered questions when it comes to DW. My only suggestion is to try and read up on it as much as you can and talk to your OB/GYN about any issues and/or concerns that you may have.
Take care , Linda

Rachella1983 dws-cpt2853@lists.careplace.com wrote:

#3

I appreciate your reply. While it’s good that it’s so rare, it also makes it hard to find much information on it. Not even many doctors know much about DWS. It’s frustrating. I will keep searching.

#4

I am pregnant with a little boy that was diagnosed with DWvariant and ACC. The doctors told us that there is a 1-5% chance of it happening again. This is a pretty low risk. I have talked to a couple of parents that live in the same town as we do and the have younger children that do not have dandy walker.

#5

I’m a ind of “foster family” of a little girl who has DW… as the neurosurgeon told us when she was in hospital to get the shunt, she has this malformation because her mother was on drugs when she was pregnant :frowning: obviously, i’m not saying this is the only cause! but i was told, although genetic plays a part, environmental exposure also does… in her case, she is the firts daughter, she has DW, but she has now 2 younger sisters who doesn’t have DW…
Hope it may help a little…

#6

A common misunderstnding is that all moms of babies with DWS have done something. My son is 13 month old with DWS and DWS is not cause by environment. Its 110% Genetics. Some people carry the gene and if the person there with has the same gene it happens. DWS is one in 5,000 babies. It’s basically like one egg will have that gene or sperm will have it and thats how it happens. The chances of it happening again are 1 to about 5 billion.