dandy-walker syndrome

[nevaehsmommy]

hi. My sister is 21 weeks. Her baby was dx with dandy-walker syndrome.

What can we expect? I dont even know what to ask. We have looked at different website but they dont seem very optimistic.

The doctor hinted at abortion.....That is a no.

Any real life stories of hope would be nice. She is a wreck.

[glamourpup]

Hi,

My baby was originally diagnosed with Dandy-Walker at around 17 weeks. It turns out that it was a false diagnosis, though he does have a very rare chromosome disorder. However, I did a lot of research about Dandy-Walker before we found out that he didn't have it!

If that's the only thing the baby is afflicted with, outcomes vary quite a bit. In general about 50% of kids have normal cognitive function. There is also a difference between a Dandy-Walker variant and Dandy-Walker malformation: the latter is more severe and usually means a part of the brain is missing.

Even so, the brain is a miraculous organ. Recently there was a story about a man in France who was having numbness in his hands and legs and went to the hospital. MRI showed a massive Dandy-Walker cyst, basically his whole brain was squished around the top of it. Doctors couldn't even figure out how he was alive and functioning: but he had a normal job, a family, a normal life.

I'd urge your sister not to lose hope. I had doctors counsel me to terminate my beautiful baby boy too. I cry now to think of it: them telling me that between his chromosomes and his brain that his life wouldn't be worth living. They were wrong, and not just because of the DW diagnosis being wrong. I wish your sister much luck and comfort, and if you want to PM me for my e-mail I'm happy to e-mail with her. By the way, if she wants a definitive diagnosis, she can get a fetal MRI. Doctors can be wrong: our perinatologist was 100% sure of what he was seeing until he saw the MRI report.

[bandgeek]

I know nothing about dandy-walker, but the pp seems to, and since it seems to affect the brain primarily, I just want you to know that brain injuries/damage/other afflictions are not a death sentence. And it doesn't mean the child will have a horrible life. Of course, I'm sure your sis is devastated now. I was too when I learned of my DD's HIE. But it DOES get better. My DD was diagnosed with moderate/severe brain damage. At birth she didn't do anything and didn't have a single reflex. She couldn't eat or breathe without help. She's 6 months old now and still very delayed, but she's definitely "there" know what I mean? She smiles and coos and interacts some. Not a lot, but more than the docs thought she would. All of her reflexes are back, though she still needs to improve some.

When DD was 9 days old, they gave us the option of discontinuing her care...in other words, letting her die. I look back and I'm just amazed that those doctors think she was in such bad shape that we should have considered letting her die. Even though she was diagnosed moderate/severe, I really feel she's going to do pretty well. Her disabilities so far seem physical. She's very intelligent.

The pp is right that the brain is a miraculous thing. Some people have half their brain removed and recover completely. I'm glad she doesn't want to have an abortion. For one thing, this could be a completely false diagnosis and secondly, the child should really be given a shot in this world. Even if he's not a typical kid, he will be LOVED.

I know a lot of people feel pity for kids with disabilities. Just last night we had a cop over to write up a report because our car was broken into and he asked what her feeding tube was for and when I told him, he said, "oh poor baby". While my DD has been through a lot, I don't pity her. She's a very happy baby and she has a family that loves her. She may not ever walk or talk, but I know for a fact her life is not going to be a bad one. We intend to do right by her and provide her with as many opportunites as possible so she can live her life as fully as she can.

I hope this ramble makes sense. LOL No matter what, your sis is going to love her baby. She will take it all in stride and handle anything that comes her way.

[Mylittlevowels]

My nephew has this. He's 7 months old. They had no idea until he was 4 months, and he had pretty severe hydrocephalus. He's had 3 shunt surgeries since January. His is relatively mild, I think - I believe he only has the posterior fossa cyst. Only time will tell how much he will be affected, but he seems to be developing normally so far.

[mamastotwo]

Hello,
I don't know about Dandy Walker Syndrome - sorry. My DD has Down syndrome and i am active on some bulletin boards. We have moms (and dads) who just found out prenatally come on regularly and find our boards provide some great support and education through the rest of the pregnancy and onward. If it were my sister i would find some Dandy Walker bulletin boards and read and introduce myself and then if there was a board i like let my sister know about it. Prayers and postitive thoughts to your family!

[nevaehsmommy]

Hi. My sister had the amnio done yesterday. They are looking for chromosome 13 and 18 problems. The "fish test" results will be read tomorrow or Monday. If the baby has that disorder as well they say life is nearly incompatible , on the other hand if sis test negative that baby will "only" have mild learning problems and coordination issue, doctor said similar to CP.

Family is a wreck. We talked with a geneticist and she recomened the whole family be screened bc of the number of cancers and learning disabilities in our family.....

so until monday.....

oh and the doc said it was dandy walker malformation not the syndrome

[nevaehsmommy]

The results for the chromosome test came in.....: The Results were good. The baby does not have any other known conditions that are incompatible with life. The doctor continues to assert that it is Dandy Walker. Now Danday Walker seems milk compared to what we were thinking might happen.

[bamamom]

I do have a dear friend whose baby had Dandy Walker Malformation. The baby lived a wonderful life with her sweet attached AP mama and daddy.

She was 100% tubefed, blind, pretty much no muscle tone anywhere on her body. Never sat, never held her head up afai can recall, but she was loved and cherished.

She lived about 18 months. She also had hydrocephaly which required a C section at 37 ish weeks. A shunt was placed and her skull shrunk nicely.

Feel free to pm me if you would like to see the website.

[Mamatohaleybug]

My 5 year old has Dandy-Walker and she's doing great. We have plenty of challenges (you can look at my previous posts here to see what I mean) but it's not nearly as overwhelming as it was at first. I would be very happy to be in email contact with you or your sister.

Please PM me!