Okay, so my cousin is 17 weeks pg and they think her baby is hydrochephalic.

[tumblewieds]

She had a lever 2 US bc she is 35 and was doing the US in lieu of an amnio. Now, she ha the amnio anyway bc hydrocephalus often occurs with other genetic issues. She has to wait 7-10 days for the results. Does anyone have any input or help on this condition? And, how do I help her get through this? She and I are two years apart and were raised as sisters, but I just don't know what to say or do.

[sarahs]

No advice, just lots of good thoughts for her. (nt)

[Storymama]

Hydrocephelus, or anecpehalus? I just ask, because I thought hydrocephaly was a post-birth issue, but I sure could be wrong. It's very treatable with shunting the CSF to the stomach. I know one person (years and years ago) who was not treated, and died as an older teenager, very malformed and completely vegetative - I can't imagine it would go untreated today.

I've known one family who had a baby with anencephaly. The baby died awhile after birth, as was expected, but they had a very special time with her until that happened.

I've also known another person for whom the anencephaly result (from scan) was a false positive, and the baby was healthy.

[Jill]

Hydrocephelus, or anecpehalus? I just ask, because I thought hydrocephaly was a post-birth issue, but I sure could be wrong. It's very treatable with shunting the CSF to the stomach. I know one person (years and years ago) who was not treated, and died as an older teenager, very malformed and completely vegetative - I can't imagine it would go untreated today.

I've known one family who had a baby with anencephaly. The baby died awhile after birth, as was expected, but they had a very special time with her until that happened.

I've also known another person for whom the anencephaly result (from scan) was a false positive, and the baby was healthy.

Hydrocephaly often does occur in utero - I have a couple friends whose children were diagnosed while they were pregnant. One of them lost the baby (due to other factors) but one has a now perfectly healthy 10 year old :)

[Kerry]

Hydrocephaly often precludes having a vaginal birth (because the head is so enlarged). Other than that, I don't know a lot about it, or what syndromes it often accompanies. My ex-stepson was born with hydrocephaly (he's mentally retarded and has agenesis of the corpus callosum) and he had a shunt placed. Both the mental retardation and the hydrocephaly were caused by the ACC; the mental retardation did not result from the hydrocephaly.

A quick google finds that hydrocephaly is often accompanied by spina bifida or Dandy-Walker syndrome.

[movingon]

But my sister lost a baby at during her sixth month of pregnancy due to several anomolous conditions, several years ago. It was heatbreaking and something she'll never get over - the doctor told her if they didn't deliver, her life would be in danger. The day of said delivery, they found the baby had already died.

Having said that, I am pretty sure hydrocephelous is treatable, and a baby can go on to a normal life, depending on the severity. But I would just offer tons of support and listening. I am sure you know this but people who are worried or grieving (for what they thought they were getting) don't want advise or platitudes. Thay just want unconditional love, comfort and empathy.

[tumblewieds]

But I would just offer tons of support and listening. I am sure you know this but people who are worried or grieving (for what they thought they were getting) don't want advise or platitudes. Thay just want unconditional love, comfort and empathy.

I do know this, but usually I don't know what to say and say something awful or just try and avoid the situation, and those aren't very good stratagies.

[Jill]

I do know this, but usually I don't know what to say and say something awful or just try and avoid the situation, and those aren't very good stratagies.

I understand how hard that is. I've been there with friends and family and it's very very awkward, and that fear of messing up can cause you to say something really dumb, yk?
Honestly what I've learned is to HUG, and to TOUCH, and to say "I love you" and "I'm here for you" and "I care". It might sound corny but OMG do those words go a long way.
I remember when my aunt's baby died - she was a micropreemie who was only a little over a pound at birth - that little girl fought hard, and lived for two months until my aunt and her husband made the difficult choice to remove her from life support. Her agony was literally PAINFUL to me (it's making me cry to remember it!) and I remember just not knowing WHAT the heck to say or do. I just hugged her and cried into her shoulder and told her I had no idea what to say except I was so sorry for her pain.
She later told me that my reaction was very special to her because I didn't try too hard, but my feelings were shared, and it was a moment of pure grief that she didn't have to discuss.

I also have a friend who delivered a full term stillborn. She called me to tell me, and I was truly just shocked. It felt like forever before words came out of my mouth and I just said "OH....Oh God. I love you, I am so sorry..." and I felt SO foolish for not knowing "the right thing" to say...but there really isn't one, yk?