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Dandy-walker syndrome...  

post #1 of 6
6/12/07 at 4:27pm
Thread Starter 
Info please! My SILs sister (and my friend) is 6 months pregnant and her baby has been diagnosed with Dandy-walker syndrome- via ultrasound. They are doing more tests too, just waiting for results. What I understand is that it is a very rare congenital malfunction. I've started reading up on it- but all the info I find is in regards to children already born, their care. Nothing about pregnancy, labor, etc.

She's been told that she could possibly loose the baby. She and her DH have been trying for two years to get pregnant. I really want to help her in anyway that I can.

I'm trying to be a support emotionally. Her husband is completely closed down right now.

Does anyone know anything about this??!

She is in such termoil, they wanted this baby so badly!
post #2 of 6
6/12/07 at 5:35pm
dandy walker syndrome

Quote:
The prognosis for patients with Dandy-Walker syndrome is only moderately favorable, even when the hydrocephalus is treated early and correctly. The presence of multiple congenital defects may adversely affect survival. Prognosis for normal intellectual development is variable depending on the severity of the syndrome and associated malformations.
I would ask how accurate ultrasound is for diagnosis something this devastating.

More information:

http://en.wikipedia.org/wiki/Dandy-Walker_malformation

s
post #3 of 6
6/12/07 at 7:55pm

Warning: this information is not happy

When Dandy Walker is bad enough to diagnose by prenatal ultrasound, it's severe by definition. Some people aren't diagnosed until after birth, and that's because the various features of it (hydrocephalus and many other things) were so subtle as to not be picked up by even the best of ultrasounds, and it may have even taken some time after the birth before anyone realized something was "wrong".

The extent of my experience with it is parents who choose to terminate. Maybe another poster will have a story with a different ending.

I'm very sorry for you and your loved ones, and I'm sorry to not have better information to share.

Jennifer
post #4 of 6
6/13/07 at 1:35am
I have a nephew, now 3 1/2 years old with dandy-walker. He was diagnosed during 20ish week ultrasound and my BIL and SIL were also told that he might not make it. Termination was not an option. SIL had a C-section at about 36 weeks, baby was breech with severe hydrocephalus. Even after he was born, he was thought not to live long. But he has, and he is an incredible blessing and joy to our family. Yes, he is special needs, has a feeding tube, in a wheelchair, has a shunt for draining fluid from his brain and is brain damaged. But his spirit is strong and I personally love to be around him and soak up his sweet spirit.

I'm not sure exactly what you are looking for, but I wanted to offer something.
post #5 of 6
6/13/07 at 3:41pm
Thread Starter 

Thank you...

Thank you for the information.

Jeng, she is 6 months along- so termination isn't an option. Although I don't think she would even if she had the option. As of right now her biggest fear is loosing the baby.

Rebecca, thank you for the kind words. They bring me hope that great things will come out of this.

Keep them in your prayers.
post #6 of 6
6/13/07 at 5:45pm
I am sorry. I will pray that your friend is given the strength to care for this child she is carrying. :

s to you for caring enough to ask.
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