Baby Diagnosed with Dandy-Walker Syndrome (24 Weeks Pregnant)

Okay I know this is probably very scary to you! I would be too! But dont worry, no matter what your child is like you will love them the same. I havent had this problem. I have 1 boy, Brayden whom is perfectly healthy. But I know what your going through. This baby was meant to be, and you will love him/her as much as the rest of your boys. Dont worry everything will work itself out okay? Just keep a positive attitude and keep getting as much info as possible! Youll do great, your a pro by now! I wish u all the luck!
Good luck, and youll do fine!
S.

"Neurologic Abnormalities." The Merck Manual of Diagnosis and Therapy, edited by Mark H. Beers, MD, and Robert Berkow, MD. Whitehouse Station, NJ: Merck Research Laboratories, 1999.

Kawame, H., et al. "Syndrome of microcephaly, Dandy-Walker malformation, and Wilms tumor caused by mosaic variegated aneuploidy with premature centromere division (PCD): report of a new case and review of the literature. Journal of Human Genetics 44, no. 4 (1999): 219-224

Dandy-Walker Syndrome Network. 5030 142nd Path West, Apple Valley, MN 55124. ###-###-####

D.,
I am sorry to hear about your baby. I have a friend that has a child with this. It is very hard for her because he has lots of birth defects. But he is a very sweet and kind little guy. He is almost 3 and just learned to walk. He dosent talk. But she has taught him some sign language. He has had two brain surgerys to remove fluids and will have to have more in the furture.

Above I have a book that my friend likes to read. An article that has alot in it. And a foundation that maybe able to help you that is located in minnesota.

I hope that things go okay for you. I hope that your little girl has a long and prosperuse life.

B.

I'm so sorry that you are having to go through all of this stress. I have a 3 year old daughter that we think has Angelman Syndrome and she has some similar traits to Dandy-Walker. She doesn't walk or talk but does crawl/hop and is the most enjoyable child you could ever meet. She's just like a big 9 month old baby. She's a beautiful child and smiles all the time and loves people.
You should get a hold of your local school district and let them know about her and find out what steps you will need to take after she's born to get started on any PT or OT that she may need. The sooner they start, the better her progress will be. They come right to your house to do it and there is no cost because it's through the school system. I just love my daughter's PT and OT, they are wonderful ladies. When she is 3 she'll start special ed preschool and they will come and get her on the bus/van and bring her home if you want or else you can bring her yourself. My little Peyton just started and I'll be driving her.
It takes very special people to raise children with special needs and you will do just fine. You cannot blame yourself for these things when they are genetic, you just have to be thankful that your other children are healthy because it could have been all of them. We also have a 4 year old daughter and she's as bright and healthy as they come.
Take it one day at a time, be happy, be proud and enjoy all of your children for the miracles they are.
You have some busy days and struggles ahead of you but the sooner you accept your child for who she is the more you will enjoy her. She will have a good life no matter what because you'll love her to death and that's all that matters.
Please feel free to email me anytime.
(((((HUGS)))))
J.
____@____.com

Thank you for the update. I am so sorry that it was a confirmed diagnoses. I'm so sorry. It sounds like they may have to drain fluid if a cyst is there. My cousin has a tube but he was born with hydrocephalis and his symptoms sound similar to this diagnoses. I pray that your baby has a full life. It looks like it might be genetic because they are saying that one should get genetic testing done. Thinking of you. Love to you and your family. -hugs-
Here's where I got my info: http://www.ninds.nih.gov/disorders/dandywalker/dandywalke...

My son was diagnosed with a dandy walker variant at 4months. He is now 23 months. He is and has been in physical therapy since being diagnosed and has some developmental delays. He is just in the past two weeks started to walk unaided but only a few steps. On the other hand he is a moderately well behaved two year old. He is beautiful, happy and healthy. We are now seeing a geneticist and trying to get him into a program where he will be helped more intensely. He also has eye problems and his hearing will be tested soon. He acts like most kids he just takes his time learning and is quieter( unless he's upset or tired). Hopefully I've helped you a little.