Does anyone know anything about Dandy-Walker Syndrome?

[CliffRichardSucksEggsinHell]

A friend of a friend is 21 weeks pregnant and has been told the baby has this. They have offered her a termination. Does anyone know anything about this? Is there any hope? It would be nice to put her in touch with other mums who have gone through this, just so she doesn't feel that she's on her own.

Anyone?

i don;t , sorry.....sorry for your friend having to go through this x

That rare huh? The info about it is here I think any advice would be appreciated.

Cheers lulumama, it's my work colleague's best mate.

have just googled and it doesn;t seem to be incompatible with life..and there are varying degrees of severity, although not treatable , has she been told to terminate as it is severe, or can they not tell yet?

x post

Have you tried posting on the special needs threads? Maybe someone there has more knowledge / experience of this syndrome.

Hope your friend gets some good advice.

She's been told to terminate very soon because it is severe. I don't know much else, work colleague on phone to her now. Hoped someone on MN might know something.

Good idea - cheers.

cliff..sorry not to be able to help.....

Tough one as it has varying degrees of severity.
My dd has a rare genetic condition which also has varying degrees of afflcition, some incompatible woth life, some severely affecting life, some live perfectly normal lives and are hardly affected
I was not diagnosed when pregnant, but dd was dx'd at 9 wks old
I can say hand on my heart had I been, I probably would have terminated based on information available.
Dd however has the mildest case ever and is a delight and has so few issues that we forget she has something.

this is not to tell your friend what she should or should not do, but that whatever she chooses no one would blame her for terminating, nor pity her for keeping her child.

it is the true rock and hard place dilemma
Are there any indications on how badly the baby would be affected?

if it is severe then she has to way up whether she can cope with a severely disabled child or not.
is this is her first child, her only child ?

I'll ask her mate to tell her about this thread.

When I was pg with DS, my local hospital picked some problems up on the scan and referred me to Kings College. Dandy-Walker was suspected, but luckily for us he didn't have it.
Cliff, has your colleagues friend been seen by a real specialist, someone who is really knowledgable in this? I just don't think I'd trust any old hospital to tell me something like this...I'd need to hear it from and discuss it with someone really specialist.

She has had an amnio which has confirmed that the baby does have Dandy Walker syndrome but they are not sure the extent. They have offered a termination but for now they are going for the MRSA scan to see how affected the baby will be and if there are any other problems, Downs and Edwards Syndrome have already been mentioned.

Did they not test on the amnio for edwards/downs as well? Edwards is not good news at all either.
I am so sorry for your friend she must be in one hell of a state.

My brother in law and his wife had this experience last year. Unfortunately the severity of their unborn babies Dandy Walker syndrome meant that his condition was incompatible with life and she too had a termination at 21 weeks. Most of the problems revolve around cerebellar cysts and this LO also had part of his skull missing . She had to give birth which was very traumatic, but has had support from a bereavement midwife. SANDS also offer support for people in this sad situation.

She is now pregnant again and expecting a baby in April.