Dandy Walker Variant

[fly8]

Hi,

I am in my 22nd week of pregnancy. I was totally normal so far but last week, the ultrasound suggested that that my fetus (baby boy) has a dandy walker variant.

Everything is normal with the brain/heart beat is normal.no enlargement of skull etc are seen

The only defect is that the vermis is missing. The doctors tried to see the vermis at various angles. But they were not able to see the vermis clearly (inferior portion). There seemed to be a gap inbetween.

So they have asked me to go for an MRI next week, which may show better images of the vermis. My questions are:

1. Will MRI be a conclusive evidence? Based on MRI should I go in for termination at 23rd week of gestation?

2. What are the chances that my next baby also has the same defect?

3. Whats the exact cause for this DWV?

4. Isnt there a possibility that the vermis would grow / be visible after some weeks?if not at 22nd week?

Would appreciate if you could help by answering the above questions.

[Dandymark]

I am 55 and I have dandy walker variant. I graduated high school, went to college for sound engineering,  I am a computer expert and run two business's please don't worry I walk and talk and I've driven a car for thirty years.

I am not disabled, others opinions of me are!

Love mark

[GuitarRox]

Very inspirational message that is appreciated.  What impact has the dandy walker variant had on your life?  I'm glad you've had a good life thus far.

[Dandymark]

I'd have to say the greatest impact has to be other's opinions if they even know. If you met me, you wouldn't know, I believe it is because my mother and father refused to give it any attention. Not ignoring it just not dwelling on it. I had a tendon lengthened in my leg so I could wear proper shoes,  thanks mom.  As far as talking is concerned,  I can speak clearly and well.

Don't let it be a thing, we all have something sooner or later.

These things the individual needs to adapt to their own situation. Please don't let it be an identity.  We are talking about people who have a zest for life ike you wouldn't believe. To me it's a beautiful gift that allows me to have everything else easier, I think anything is no problem.

My mom made sure I would walk, how many times did walk up and down the front hall, shed ask me to answer the door,  so I have a bit of a limp, I also walk 30 minutes to get a cup of tea.

I don't think I'm few and far between,  it was mom and dad. THEY are the ones who said I could have any excuse but that, without actually saying it,

See I could go on forever,  it's going from a comment to a novel.

Allow them to feel normal,  don't notice it.

They will relentlessly try if you would only go along with them talk, walk sing then dance.

Try that again,  ok once more, mom's words. Not like the army, just a bit every day.

Music, I can't say enough about how it's a beautiful brain organizer, teach proper breathing from the start,


I am a product of my parents faith in me, im living proof of what great parents can accomplish despite that file folder

[alhh]

Hello, I realize that this was posted many years ago, but it seems that we have similar stories.  My son with DWV is now 12 and like you they highly suggested that we have an abortion, which was never an option for us.  They said he MAY never talk or walk and I sure wish they could see him today.  As you know, there are not many answers or other parents who understand or know about Dandy Walker and I would just like to be able to talk to someone who is on the same path with our wonderful kids.  Please if you feel like it then contact me and we could talk and give updates of trials and triumphs.  If you wish to remain private then I understand and wish you well.

Sincerely,
Amy Howe

Facebook- Amy Hooker Howe
Email- two.***@****

[Jayb8]

Hello,I have a beautiful baby girl now 10 months old. She was diagnose with DW the doctors said its not the full syndrome but she haven't started doing anything as yet I pray but am still worried about her....

[Kishia_86]

Hi my baby who is now 16 months was diagnosed with down syndrome but I didn't give up because I KNOW who is my God. I went back and forth to many doctors,  have had an MRI while I was pregnant ( which was awful) BUT we made it. She was born and did not have down syndrome she has never went thru any kind of surgery. We've gone to many many doctors to only find out that it was Dandy Walker Syndrome. Thank you Jesus any how. We're on our 4th child and prepared for any diagnostic .

[ninaxena]

Hi,

I just wanted to share my experience.  My son was born with a mild case of PHACE syndrome-one condition which came along with it was a dandy walker variant.  He is now almost six.  He has had a bit of a speech delay, but otherwise is completely normal, and actually advanced in reading and mathematics.
What is important to understand is that dandy walker VARIANT is different than dandy walker SYNDROME.  The reason there is not much information on the variants is because many people live out their entire lives never knowing they have it until they have an accident or something and have to get an MRI.  The grim prognosis is based on KNOWN cases of dandy walker SYNDROME, and not the variant.
I am very against terminating a pregnancy based on a doctors prenatal diagnosis alone.  Even the best docs can be wrong.  Even the best technicians can get a baby's sex wrong-it is important to know all of your options, and understand EXACTLY what it is that your child has.  Even with a DWV, there is a very high possibility that child will be just fine.
I will pray for you and your kiddo.

[jgoes]

I just had to post a comment.  I've been reflecting recently on my experience almost 10 years ago.  I was pregnant with twins and was told that one twin likely had Dandy Walker.  They gave that baby a "poor prognosis" and told me to have an amnio done.  The amnio didn't solve anything, so I was left to wait it out.  At 33 weeks I had my 2 beautiful healthy babies (3 lb 11 oz and 2 lb).  Although the little one had not been growing well due to the cord blood issues AND I was told she had DW, she was breathing and healthy and left the hospital 5 weeks later weighing 3 lbs 1 oz and a total miracle.  Today, she is almost 10 years old and a COMPLETE BLESSING.  Do not always believe everything the doctors tell you.  They are just people and they make mistakes.  Turned out, she did have a benign cyst in her brain, but it has caused no problems.  Could be that is what they saw via ultrasound, or it could be our prayers were answered by our almightly God!  Don't lose the faith and NEVER consider an abortion because of what some doctors "think" they see in an ultrasound!  

[specialmomspecialbabies]

hi i'm 24 and have a 2 year old son with dandy walker i wouldn't trade him for anything they tried to tell me he wouldn't walk or talk or do anything on his own THEY WERE WRONG sometimes doctors can be wrong to just remember god blessed you with this child for a reason and there is a possiablity of having more then one child with it just so you know. i have two boys 3 and 2 only my youngest has it and we are concidering haveing one more child and even if that child has it wouldn't change how much i love them

[tks101]

A week and a half ago  I had a MRI to see if my baby had a dandy walker cyst. At 16 and 18 weeks I was told it was seen on my ultrasounds  and was lead to believe that my baby was possibly in pretty bad shape. I was also being influenced at the hospital to think about abortion. I would never consider doing that but the sad part was that I was being influenced for the abortion before the MRI was done. Yesterday I got the results of my MRI and the doctor said my babies brain was perfect! At this point they can't find any problems with my baby. I wonder how many babies lose their lives because a doctor THINKS they see something on an ultrasound that really isn't there. If I had this to do all over again I wouldn't change a thing about my decisions. But I hope that if there is anyone else out there reading this that you will think about what I just said and keep your faith. These doctors are good at what they do in the hospital but they suck at playing GOD!

[NaniKai]

Hi
I found this link that you can go and read some more information about Dandy Walker Variant.
http://www.geocities.com/Heartland/Hills/3919/dws.html

Mind you, I wasn't going to post here again but you seemed like you need some answers.
The beginning of the article is below, please copy and paste the above link into your browser (the spot where you type www....com when you want to go to a website). It will take you to the page to complete the reading of this article.

About Dandy Walker:

Dandy Walker is known by many names: Dandy Walker Syndrome, Dandy Walker Malformation, Dandy Walker Cyst, Dandy Walker Variant.

By definition, Dandy Walker is a congenital brain malformation typically characterized by incomplete formation of the cerebellar vermis, dilation of the fourth ventricle, and enlargement of the posterior fossa. In layman's terms, Dandy Walker is a cyst in the cerebellum (typically symmetrical) that is involved with the fourth ventricle. This may interfere with the body's ability to drain cerebrospinal fluid from the brain, resulting in hydrocephalus.

Also if you type Dandy Walker Variant into a Google search, it will list other websites that might give you more answers.

My prayers and strength are with you and your families...Best Wishes.
NaniKai

[srih]

Can you please please share your experience ? We got the same result yesterday in our 22nd week ultrasound and we are feeling devastated and we are thinking about getting second option on monday and then decide on what to do next.

[AMO]

hi fly8

I wanted to make sure you knew this side of the forum is not read and ansswered by the doctor, it is a patient to patient.

I do not know what to say, bbut i wanted to answer you and let you know you and your baby are in my prayers.
I can not begin to imagine whatt this diifcut time is for you.
wishing you well, and keep faith
amo