I'm new and need help

Dandy Walker Syndrome
#1

I’m hoping that someone will be able to answer our questions.

I’m 21 weeks pregnant and was told yesterday that our baby has a partial agenesis of cerebellar vermis which is consistant with Dandy Walker. However looking on the internet, there seems to only be a diagnosis of Dandy Walker if there is three things: an absent cerebellar vermis (whole or partial), a cyst, and an enlargement of the fourth ventricle. However, our baby doesn’t have a cyst or an enlargement and the consultant (Kings College Hospital, London) has said that it is “extremely unlikely” that these will appear during further development.

Would this mean that the impact it has on our baby’s life will be less severe than those with the three problems??

We are so worried and don’t know what to do for the best. They have said that apart from the fact that part of the vermis is missing our baby is completely normal and growing as expected without any further issues.

Please if someone can give us any further answers it would be very much appreciated. The consultant has said that he can only give facts, not opinions.

jenem

#2

Dear Missy23397, thank you so much for your reply. I think it’s the first time i’ve stopped crying and smiled in 48 hours! It’s good to hear Tess is thriving, and to learn more from other people’s own experiences. It’s actually made me feel more positive about things.
Thank you again so much
jenem

#3

I’m glad I could help! As the days go by your mind will probably think of more and more things, ask away we’re more than happy to share our story and experiences with you. Just a suggestion, now might be the time to start interview pediatric neouroligests and find one that your comfortable with. The last thing you want is to have to deal with a stranger in the hospital when your baby is born. This way you have time in advance to see how different Dr.s communicate and what their experiences are and find one that best fits your personality. You will find that since they have officially diagnosed the baby with dws that you might prefer to see a perintoligest *sp for the duration of your pregnancy instead of a regular ob/gyn, they are definatly more experienced in dealing with such things and my guess is the might want to do a 3D or level 2 ultrasound to get a better look at everything. For us having all the information we could, in advance, helped us
prepare for what to expect and how to react to things.

----- Original Message ----
From: Jenem dws-cpt6343@lists.careplace.com
To: missy23397@yahoo.com
Sent: Tuesday, October 16, 2007 11:42:15 AM
Subject: Re: [dws] I’m new and need help

#4

Hi Jenem,

My granddaughter, who lives with us, was born with what they are calling a dandy walker varient. She has no cyst, her fourth ventricle isn’t enlarged and her cerebellar vermis is completely developed. What she does have is only a partially developed corpus collosum, a “prominent” cisterna magma and hydrocephalus. Neuros it seems to me from what we’ve read tend to throw patients with symptoms that aren’t a specific syndrom and call it a varient. My point is when you search DWS on the web you will see some pretty scary stuff and it very well may not apply to your situation at all. I can only imagine what your going through trying to figure all this out so early in your pregnancy, we found out that our little Tess had problems at 36 weeks and my daughter ended up delivering at 37 weeks, which although she is considered premie, it left us not having to worry and wonder for months. Here is what I can tell you about Tess, she is now 5 months old and in many
ways very age appropriate even for a premie. She is extreamly social, she babbles and coo’s, smiles when you talk to her, knows her name and turns and looks at you if you say her name. She eats well, she rolls over both from her tummy to her back and vice versa. She can reach and grasp her toys and to look at her you’d have no idea she had any problems. Its her lateral ventricles that are dialted and her head isn’t large at all. She does have some delays, she prefers her right side to her left, she will only roll to the right, she tends to look to the right more than the left and she is definatly stronger on the right. Her muscle control on the left is behind, her eye drifts from time to time, when she sticks out her tongue she sticks it out to the right. She is in early intervention here, where she recieves physical therapy, occupational therapy, and speech therapy(the speech therapy isn’t for any communication issues but to help strenthen the left
side of her tongue). All of these things are a great help as they not only work with her once a week, they show us how to incorperate different things into her everyday routine that helps her get “evened out”. Please know that every baby born with a issue in their brain isn’t a doomsday diagnosis. I have read posts from many adults that were diagnosed in their 30s and 40s with DWS or a varient of it and they’ve gone all their lives not knowing and done just fine. Years ago before ultra sounds people were born with these things and never even knew it and have done just fine. Maybe they had a little trouble in school or didn’t do well in sports, things that were just chalked up to that persons individual skills, not a development issue. I hope I’ve helped you get a idea of how things can go and that its not near as bad as the Dr.s make it sound! If I can answer any more questions for you or if you’d just like to talk feel free to email me. Good luck to
your family!!

----- Original Message ----
From: Jenem dws-cpt6343@lists.careplace.com
To: missy23397@yahoo.com
Sent: Tuesday, October 16, 2007 9:52:39 AM
Subject: [dws] I’m new and need help

#5

i found out at 20 weeks that savannah had DWV. I am pleased to report that she turned one on Oct. 7 and is doing wonderfull. She hit all her milestones on time or before. She is trying so hard to walk now. and she loves to dance (you know the bounce dance that babies do) she is super cute. she was born 4 weeks early and was in the nicu for 3 days. but was able to come home when i did. she had an mri the day she was born to confirm the DWV. We go next week to the neruolgist to see how she is doing. To me you would never know anything was different about her unless we told you. She looks normal and is very social. She is a very lovey baby and we are very blessed to have her. i know the internet search can be very scary. the best advice i got was to walk away from the internet and enjoy my pregnancy. what ever is going to happen in your babies life you can get through it. I am here if you ever want to talk. i was like you and cried alot at first. but it does get easier and better. and you can’t worry about the what if’s.

#6

My 3 year old daughter has Dandy Walker Variant, She was diagnosed when i was 5 months pregnant with her. All the doctors told me to not have her, but I did. Her cognitive skills are at age level, she is a little delayed in her motor skills but is doing better everyday! She is beautiful and loving and I wouldn’t want her any other way. She walks, runs, and does everything a 3 year old is suppose to do, although she has been in physical therapy since she was 9 months old. Her doctors told me they are amazed at how well she is doing, and hopefully in the next year or so can catch up to the rest of the kids her age.

#7

Thank you so much for your words of wisdom, Missy, Charity and Kymbirley. We are still somewhat shell shocked by the news but we are slowly starting to feel more positive, and that is down to your replies. We can only hope for the best for our babies and when you are told they are anything less than perfect it’s absolutely horrendous.

We really do appreciate all your comments and no doubt will ask more as they arise! I’ve gotta have another scan next friday (not sure why they re-scan) but i’ll definitely be back on.

Thanks again ladies and by the way Kymbirley your daughter is gorgeous!

Jenem x

#8

Hello

A little story for you.
I am a 49 Y/O male and never knew I had a dandy walker varient untill March of this year. I was a little clumbsy and slow had some bad headaches but I did ok. I was in my 30’s when i started having bad headaches and started having trouble with my back. I went to a lot of Dr’s and most of them said I had worked so hard I wore my body out. Then they said I had Arthritis. Then 3 years I was told to stop working and try to enjoy a little life because my back, legs and feet had gotten so bad. My eyes started turing out and my hearing is failing. I have trouble walking and no energy. Mainly I get to sit or lay around watching TV. I do sit out side a lot when its nice. I would really love to go back to work but I just cant. SSDI has been taking there time paying me its been 2 1/2 years and no check yet. However things dont look good for me BUT I have had a good life I have 4 great kids and 4 grandkids and I have 3 Stepkids. Kids are what lifes all about. They call a lot and I get to see them a lot. As I sit here I thank God for the life I have had, and all the love and joy. And for having time to spend with the kids and grandkids. All in all I wouldn’t trade my life with anyone.

#9

Hello I know this is a very old post but if anyone could tell me how their baby are doing this could help to know something more about what my baby has

 I am 27 weeks pregnant  and my baby girl has been diagnosed with partial agenesis of cerebellum vermis, I had an MrI and the diagnosed has been confermed at the moment every thing else is normal so seems to be an isolated case , doctor are very vague and told me she could be mentally handicapped or have delays in movements and learning but they don't really know how she will be affected . If you read this post please help me , I hope all your kids are doing well and sharing with you this experience can help to understand better.