If there is anyone that has had a twin pregnancy where one of the
twins had anencephaly, i would really like to talk to you and ask
some questions. This is so bitter sweet that I just can't hold it
together.  We are scared, angry and hurt.  I really want to be happy
for the other baby - but that's all I do is cry in fear that some
other bad news may come our way.  Please if anyone has experienced
this - please contact me.  My name is Debbie and my husbands name is
Mike.  Thank you -

Hi Debbie

I know of a couple of twin pregnancies where one baby suffered
anencephaly. One story I can think of is babies Michaela and Eric
(born to a couple in the US). Michaela had anen but lived for several
days. You can read their story online at:

http://www.geocities.com/becky_formo/ourangelmichaela.html

Also, you could read the story of Sunshine Joy (who had anen) and her
twin sister at:

http://www.geocities.com/sunshinejoy625

I'm so sorry you're going through this. My only child Annabel Lilly
died 15 minutes after her birth in April this year. There are lots of
resources on the Internet which have more information than your
doctors do. Here are a couple of great sites I recommend.

Anencephaly Blessings From Above (Yahoo)
Mourning Mommies (MSN)
Anencephaly Support (Yahoo)

These are all support sites of parents (mostly mothers) who've had a
baby with anencephaly. It's really helpful to talk to people
who've "walked in your shoes". I really recommend you have a scan
through them even if you don't join in- it was a great comfort to me.
I don't have the direct address on hand but you could find them using
any good search engine (Google, Yahho etc)

Also, another good resource for you is CLIMB (Centre for Loss in
Multiple Birth), which is US-based (not sure where you're from?). You
can reach them at:

http://www.climb-support.org/

Oh- one more!

http://www.erichad.com/pom/index.htm - this is also centred around
loss of one or more babies in a multiple birth.

Best to you
Bella


--- In anencephaly@y..., "dgriffin1118" <deborahgriffin180@h...>
wrote:
> If there is anyone that has had a twin pregnancy where one of the
> twins had anencephaly, i would really like to talk to you and ask
> some questions. This is so bitter sweet that I just can't hold it
> together.  We are scared, angry and hurt.  I really want to be
happy
> for the other baby - but that's all I do is cry in fear that some
> other bad news may come our way.  Please if anyone has experienced
> this - please contact me.  My name is Debbie and my husbands name
is
> Mike.  Thank you -

Im not sure if you got my earlier message, I am in exactly the same
position as you. I know what your going through as we are going
through it too.   We found out on the 27th of November (last week)
that one of our much wanted twins has anencephaly.  We are devastated
and scared for the future but trying to remain positive for our
healthy twin.  I was given some options, and chose to be guided by my
consultant.  The plan is, keep both babies now, start steroids at 26
weeks, scans once a fortnight.  Then if the healthy twin is being
compromised by the poorly twin, further treatment.  Can tell you more
if you want to email me.  I thought we were the only ones going
through this terrible ordeal, sorry to hear that you are going
through it too.  My email is lethbridge@... if you want to
keep in touch.  Im 17 weeks now.  Im in the UK. Ive searched and
searched on the internet for more knowledge of this.

Tracey and David x

--- In anencephaly@yahoogroups.com, "dgriffin1118"
<deborahgriffin180@h...> wrote:
> If there is anyone that has had a twin pregnancy where one of the
> twins had anencephaly, i would really like to talk to you and ask
> some questions. This is so bitter sweet that I just can't hold it
> together.  We are scared, angry and hurt.  I really want to be
happy
> for the other baby - but that's all I do is cry in fear that some
> other bad news may come our way.  Please if anyone has experienced
> this - please contact me.  My name is Debbie and my husbands name
is
> Mike.  Thank you -

Please email me if you can, how many weeks are you?

Tracey

--- In anencephaly@yahoogroups.com, "dgriffin1118"
<deborahgriffin180@h...> wrote:
> If there is anyone that has had a twin pregnancy where one of the
> twins had anencephaly, i would really like to talk to you and ask
> some questions. This is so bitter sweet that I just can't hold it
> together.  We are scared, angry and hurt.  I really want to be
happy
> for the other baby - but that's all I do is cry in fear that some
> other bad news may come our way.  Please if anyone has experienced
> this - please contact me.  My name is Debbie and my husbands name
is
> Mike.  Thank you -

I am 31 and have 2 healthy children. My husband and I never thought
about something like this happening to our baby. We took for granted
that everything would be fine. Within 2 weeks of knowing the
diagnosis, we lost our baby. I don't understand how or why this
happened to us. I have gone over everything I can think of to see
what I did wrong, or took, or ate, or drank that caused this. I am
still stunned. I don't feel like this is and has happened to
me....help. I need to talk to someone about this.....thank you.

> Hi

We too are still stunned by this anencephaly.  As we are having twins, we are
blessed with a second chance as one of our babies is fine so far (Im 21 weeks
now).  I thought of all the things I did, like cleaning the cooker with oven
cleaner, drank two glasses of red wine once when I thought i had lost the
babies, walked through a bus station full of oil fumes!! Its just pointless, as
this has got nothing to do with anything you or I have done.  I have been told
that it could be a grandparent exposed to something even.  There is basically no
way of stopping it.  I have taken folic acid every day, so that has made no
difference to me.  We found out last week that we are having two girls, I feel
my poorly twin kicking regularly, I love to feel her, but it makes me cry too. 
But Im lucky to have the time I have left with her I guess.  I just have to
remain positive for my healthy twin.

Its great to hear that you have two healthy children.  I have none.  We have
lost 4 babies before this to ectopics, these are IVF babies.  Again, IVF has
nothing to do with the anencephaly (I thought of that too!)

Im not sure where you are but this anencephaly is more common in the UK than any
other country in the world, and caucasian women are the highest risk group.

I know its hard, i really do, but you are sooo lucky to have two healthy
children, when my healthy girl is born, I am going to live each day, thankful
for everything i have, this puts everything into perspective, bills, sill
quarrels with my husband etc.  This has brought us even closer together.

I hope you can find the silver lining in this too, devastating as it is, we both
have a lot of things to be thankul for.

Contact me whenever you want.

Tracey, David, Ella and Evie

XX

> From: "Tracie <star712001@...>" <star712001@...>
> Date: Tue 24/Dec/2002 14:31 GMT
> To: anencephaly@yahoogroups.com
> Subject: [anencephaly] (unknown)
>
>


__________________________________________________________________________
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> Hi

Thank you so much for your words, they help a lot.  I am trying to find the
silver lining in all this.  Im 20 weeks now and we found out that my twins are
girls, Evie (the poorly twin)and Ella.  I can feel them kick now too which is so
wonderful and so sad at the same time!  We are hanging in there and being as
positive as possible for Ella who is healthy.  We were going to have Evies heart
stopped at 16 weeks, but firstly, I was hysterical over that, secondly my
consultant recommended carrying both to 32 weeks at least with me having
steroids from 26 weeks to help them grow stronger.

I now want so much to go as far as possible and get a chance to hold both girls
in my arms.  Saying goodbye to Evie will be the hardest thing I have ever
experienced and I have lost 4 babies before due to ectopic pregnancies, they
were hard to cope with, this is harder.  But the chance to see Ella grow up is
such a wonderful chance, I hope we get a chance to appreciate every sleepless
night!

Thanks again for your words. You know at a time like this my brain is like marsh
mallow most of the time!  I wish you never had to feel the pain we feel at the
moment, but knowing you understand is great.

Tracey, David, Ella and Evie
XX
> From: kimm101429@...
> Date: Fri 27/Dec/2002 08:27 GMT
> To: anencephaly@yahoogroups.com
> Subject: Re: [anencephaly] (unknown)
>
>
> Hi, My name is Kimberly.  I haven't been a part of this group for long but, I
> certainly understand all of the emotions you are feeling!!  I wish I had
> found a group like this when I first lost my daughter.  I think the sooner
> you can talk to others who have been through it, the better it is for you.
> Not that it's ever easy but, at least you know you're not alone.  It helps to
> know that all the things you are feeling are normal.  If there is such a
> thing!!
>
> I remember when I lost Kimmie on May 2, 1997 all I could do was wonder what I
> did wrong.  It had to be my fault!!  I was her mother, I should have been
> able to save her.  Did I drink too much caffeine?  Did I stand to close to
> the microwave?  Was I being punished for something?  Why didn't I take those
> nasty vitamins?  What was I thinking?  I wanted to do it all over?  This time
> I would do it right.
>
> People put their babies in dumpsters...others have twins.  Can't I just have
> my baby back?  I could go and on but, you get the point.  If there was
> anything any of us could do to help ease your pain, we would do it in a
> heartbeat!!  Right now the only thing we can offer is a listening ear and the
> hope you will find comfort in knowing that everything you feel and everything
> you think has been felt and thought a million times by others just like you.
>
>
> There isn't anything you can't ask us or anything you can't say to us.  We
> have been there and we are here to walk with you.
>
> Hugs,
> Kimberly
> mommy to earth angels Cheyenne and Chaelynne
> and angel in Heaven, Kimmie (May 2, 1997)
> (\o/)  (\o/)  (\o/)
>  /_\    /_\    /_\
>
>


__________________________________________________________________________
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your first 3 months, that's HALF PRICE! And then it's just £13.99 a month
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For more information visit http://www.freeserve.com/time/ or call free on
0800 970 8890

Hi,
   I am sorry to hear of your sad news of one of your
twins.  I am curious , you said you have taken folic
acid .  How many miligrams were you taking?
   Thanks for listening.
--- lethbridge@... wrote:
>
> > Hi
>
> We too are still stunned by this anencephaly.  As we
> are having twins, we are blessed with a second
> chance as one of our babies is fine so far (Im 21
> weeks now).  I thought of all the things I did, like
> cleaning the cooker with oven cleaner, drank two
> glasses of red wine once when I thought i had lost
> the babies, walked through a bus station full of oil
> fumes!! Its just pointless, as this has got nothing
> to do with anything you or I have done.  I have been
> told that it could be a grandparent exposed to
> something even.  There is basically no way of
> stopping it.  I have taken folic acid every day, so
> that has made no difference to me.  We found out
> last week that we are having two girls, I feel my
> poorly twin kicking regularly, I love to feel her,
> but it makes me cry too.  But Im lucky to have the
> time I have left with her I guess.  I just have to
> remain positive for my healthy twin.
>
> Its great to hear that you have two healthy
> children.  I have none.  We have lost 4 babies
> before this to ectopics, these are IVF babies.
> Again, IVF has nothing to do with the anencephaly (I
> thought of that too!)
>
> Im not sure where you are but this anencephaly is
> more common in the UK than any other country in the
> world, and caucasian women are the highest risk
> group.
>
> I know its hard, i really do, but you are sooo lucky
> to have two healthy children, when my healthy girl
> is born, I am going to live each day, thankful for
> everything i have, this puts everything into
> perspective, bills, sill quarrels with my husband
> etc.  This has brought us even closer together.
>
> I hope you can find the silver lining in this too,
> devastating as it is, we both have a lot of things
> to be thankul for.
>
> Contact me whenever you want.
>
> Tracey, David, Ella and Evie
>
> XX
>
> > From: "Tracie <star712001@...>"
> <star712001@...>
> > Date: Tue 24/Dec/2002 14:31 GMT
> > To: anencephaly@yahoogroups.com
> > Subject: [anencephaly] (unknown)
> >
> >
>
>
>
__________________________________________________________________________
> Freeserve AnyTime - Go online whenever you want for
> just £6.99 a month for
> your first 3 months, that's HALF PRICE! And then
> it's just £13.99 a month
> after that.
>
> For more information visit
> http://www.freeserve.com/time/ or call free on
> 0800 970 8890
>
>
>


__________________________________________________
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Hi

400mg a day.  Have been told to take 500mg a day for next pregnancy.  So far,
both twins are ok, as in the healthy twin has had her 20 week anomaly scan and
is fine, and the anencephalic twin is not causing any problems to the pregnancy.
Both are kicking soo much and its lovely to feel. My plan now is to carry both
to term as long as there are no other problems.  Want to spend as much time as
possible with the poorly twin.

May I ask if you  have had any anencephaly experience, or just curious.

Thanks

Tracey (Ella and Evie)
>
> From: s g <kismet5000@...>
> Date: Thu 02/Jan/2003 02:57 GMT
> To: anencephaly@yahoogroups.com
> Subject: Re: [anencephaly] (unknown)
>
> Hi,
>   I am sorry to hear of your sad news of one of your
> twins.  I am curious , you said you have taken folic
> acid .  How many miligrams were you taking?
>   Thanks for listening.
> --- lethbridge@... wrote:
> >
> > > Hi
> >
> > We too are still stunned by this anencephaly.  As we
> > are having twins, we are blessed with a second
> > chance as one of our babies is fine so far (Im 21
> > weeks now).  I thought of all the things I did, like
> > cleaning the cooker with oven cleaner, drank two
> > glasses of red wine once when I thought i had lost
> > the babies, walked through a bus station full of oil
> > fumes!! Its just pointless, as this has got nothing
> > to do with anything you or I have done.  I have been
> > told that it could be a grandparent exposed to
> > something even.  There is basically no way of
> > stopping it.  I have taken folic acid every day, so
> > that has made no difference to me.  We found out
> > last week that we are having two girls, I feel my
> > poorly twin kicking regularly, I love to feel her,
> > but it makes me cry too.  But Im lucky to have the
> > time I have left with her I guess.  I just have to
> > remain positive for my healthy twin.
> >
> > Its great to hear that you have two healthy
> > children.  I have none.  We have lost 4 babies
> > before this to ectopics, these are IVF babies.
> > Again, IVF has nothing to do with the anencephaly (I
> > thought of that too!)
> >
> > Im not sure where you are but this anencephaly is
> > more common in the UK than any other country in the
> > world, and caucasian women are the highest risk
> > group.
> >
> > I know its hard, i really do, but you are sooo lucky
> > to have two healthy children, when my healthy girl
> > is born, I am going to live each day, thankful for
> > everything i have, this puts everything into
> > perspective, bills, sill quarrels with my husband
> > etc.  This has brought us even closer together.
> >
> > I hope you can find the silver lining in this too,
> > devastating as it is, we both have a lot of things
> > to be thankul for.
> >
> > Contact me whenever you want.
> >
> > Tracey, David, Ella and Evie
> >
> > XX
> >
> > > From: "Tracie <star712001@...>"
> > <star712001@...>
> > > Date: Tue 24/Dec/2002 14:31 GMT
> > > To: anencephaly@yahoogroups.com
> > > Subject: [anencephaly] (unknown)
> > >
> > >
> >
> >
> >
> __________________________________________________________________________
> > Freeserve AnyTime - Go online whenever you want for
> > just £6.99 a month for
> > your first 3 months, that's HALF PRICE! And then
> > it's just £13.99 a month
> > after that.
> >
> > For more information visit
> > http://www.freeserve.com/time/ or call free on
> > 0800 970 8890
> >
> >
> >
>
>
> __________________________________________________
> Do you Yahoo!?
> Yahoo! Mail Plus - Powerful. Affordable. Sign up now.
> http://mailplus.yahoo.com
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>
>


__________________________________________________________________________
Freeserve AnyTime - Go online whenever you want for just £6.99 a month for
your first 3 months, that's HALF PRICE! And then it's just £13.99 a month
after that.

For more information visit http://www.freeserve.com/time/ or call free on
0800 970 8890

Hello,

    I did have an anencephalic pregnancy which came to
a tragic end Sept. 11, 2001.  The same day as the
tragegy that struck everyone.
    We are trying again and i am taking 4g folic acid
plus prenatal vitamins which include 1g as well for
the past 4 months which was recommended by my ob.
We now have the green light to try again.  I have
never before been pregnant or had children prior to
2001.  I am 39 yrs old and pray for a healthy child.
Thanks for the info.  i really appreciate this site.
If I do ever get pregnant i will need lots of support
from this site.
   Thanks again.  sg




--- lethbridge@... wrote:
> Hi
>
> 400mg a day.  Have been told to take 500mg a day for
> next pregnancy.  So far, both twins are ok, as in
> the healthy twin has had her 20 week anomaly scan
> and is fine, and the anencephalic twin is not
> causing any problems to the pregnancy.  Both are
> kicking soo much and its lovely to feel. My plan now
> is to carry both to term as long as there are no
> other problems.  Want to spend as much time as
> possible with the poorly twin.
>
> May I ask if you  have had any anencephaly
> experience, or just curious.
>
> Thanks
>
> Tracey (Ella and Evie)
> >
> > From: s g <kismet5000@...>
> > Date: Thu 02/Jan/2003 02:57 GMT
> > To: anencephaly@yahoogroups.com
> > Subject: Re: [anencephaly] (unknown)
> >
> > Hi,
> >   I am sorry to hear of your sad news of one of
> your
> > twins.  I am curious , you said you have taken
> folic
> > acid .  How many miligrams were you taking?
> >   Thanks for listening.
> > --- lethbridge@... wrote:
> > >
> > > > Hi
> > >
> > > We too are still stunned by this anencephaly.
> As we
> > > are having twins, we are blessed with a second
> > > chance as one of our babies is fine so far (Im
> 21
> > > weeks now).  I thought of all the things I did,
> like
> > > cleaning the cooker with oven cleaner, drank two
> > > glasses of red wine once when I thought i had
> lost
> > > the babies, walked through a bus station full of
> oil
> > > fumes!! Its just pointless, as this has got
> nothing
> > > to do with anything you or I have done.  I have
> been
> > > told that it could be a grandparent exposed to
> > > something even.  There is basically no way of
> > > stopping it.  I have taken folic acid every day,
> so
> > > that has made no difference to me.  We found out
> > > last week that we are having two girls, I feel
> my
> > > poorly twin kicking regularly, I love to feel
> her,
> > > but it makes me cry too.  But Im lucky to have
> the
> > > time I have left with her I guess.  I just have
> to
> > > remain positive for my healthy twin.
> > >
> > > Its great to hear that you have two healthy
> > > children.  I have none.  We have lost 4 babies
> > > before this to ectopics, these are IVF babies.
> > > Again, IVF has nothing to do with the
> anencephaly (I
> > > thought of that too!)
> > >
> > > Im not sure where you are but this anencephaly
> is
> > > more common in the UK than any other country in
> the
> > > world, and caucasian women are the highest risk
> > > group.
> > >
> > > I know its hard, i really do, but you are sooo
> lucky
> > > to have two healthy children, when my healthy
> girl
> > > is born, I am going to live each day, thankful
> for
> > > everything i have, this puts everything into
> > > perspective, bills, sill quarrels with my
> husband
> > > etc.  This has brought us even closer together.
> > >
> > > I hope you can find the silver lining in this
> too,
> > > devastating as it is, we both have a lot of
> things
> > > to be thankul for.
> > >
> > > Contact me whenever you want.
> > >
> > > Tracey, David, Ella and Evie
> > >
> > > XX
> > >
> > > > From: "Tracie <star712001@...>"
> > > <star712001@...>
> > > > Date: Tue 24/Dec/2002 14:31 GMT
> > > > To: anencephaly@yahoogroups.com
> > > > Subject: [anencephaly] (unknown)
> > > >
> > > >
> > >
> > >
> > >
> >
>
__________________________________________________________________________
> > > Freeserve AnyTime - Go online whenever you want
> for
> > > just £6.99 a month for
> > > your first 3 months, that's HALF PRICE! And then
> > > it's just £13.99 a month
> > > after that.
> > >
> > > For more information visit
> > > http://www.freeserve.com/time/ or call free on
> > > 0800 970 8890
> > >
> > >
> > >
> >
> >
> > __________________________________________________
> > Do you Yahoo!?
> > Yahoo! Mail Plus - Powerful. Affordable. Sign up
> now.
> > http://mailplus.yahoo.com
> >
> >
> >
> > Your use of Yahoo! Groups is subject to
> http://docs.yahoo.com/info/terms/
> >
> >
> >
>
>
>
__________________________________________________________________________
> Freeserve AnyTime - Go online whenever you want for
> just £6.99 a month for
> your first 3 months, that's HALF PRICE! And then
> it's just £13.99 a month
> after that.
>
> For more information visit
> http://www.freeserve.com/time/ or call free on
> 0800 970 8890
>
>
>


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One more question please,
   You have been told to take 500mg a day for the next
pregnancy?  They told me 4grams 10 times the normal
dose per day.  Did you mean 5 grams?
   Thanks , sg



--- lethbridge@... wrote:
> Hi
>
> 400mg a day.  Have been told to take 500mg a day for
> next pregnancy.  So far, both twins are ok, as in
> the healthy twin has had her 20 week anomaly scan
> and is fine, and the anencephalic twin is not
> causing any problems to the pregnancy.  Both are
> kicking soo much and its lovely to feel. My plan now
> is to carry both to term as long as there are no
> other problems.  Want to spend as much time as
> possible with the poorly twin.
>
> May I ask if you  have had any anencephaly
> experience, or just curious.
>
> Thanks
>
> Tracey (Ella and Evie)
> >
> > From: s g <kismet5000@...>
> > Date: Thu 02/Jan/2003 02:57 GMT
> > To: anencephaly@yahoogroups.com
> > Subject: Re: [anencephaly] (unknown)
> >
> > Hi,
> >   I am sorry to hear of your sad news of one of
> your
> > twins.  I am curious , you said you have taken
> folic
> > acid .  How many miligrams were you taking?
> >   Thanks for listening.
> > --- lethbridge@... wrote:
> > >
> > > > Hi
> > >
> > > We too are still stunned by this anencephaly.
> As we
> > > are having twins, we are blessed with a second
> > > chance as one of our babies is fine so far (Im
> 21
> > > weeks now).  I thought of all the things I did,
> like
> > > cleaning the cooker with oven cleaner, drank two
> > > glasses of red wine once when I thought i had
> lost
> > > the babies, walked through a bus station full of
> oil
> > > fumes!! Its just pointless, as this has got
> nothing
> > > to do with anything you or I have done.  I have
> been
> > > told that it could be a grandparent exposed to
> > > something even.  There is basically no way of
> > > stopping it.  I have taken folic acid every day,
> so
> > > that has made no difference to me.  We found out
> > > last week that we are having two girls, I feel
> my
> > > poorly twin kicking regularly, I love to feel
> her,
> > > but it makes me cry too.  But Im lucky to have
> the
> > > time I have left with her I guess.  I just have
> to
> > > remain positive for my healthy twin.
> > >
> > > Its great to hear that you have two healthy
> > > children.  I have none.  We have lost 4 babies
> > > before this to ectopics, these are IVF babies.
> > > Again, IVF has nothing to do with the
> anencephaly (I
> > > thought of that too!)
> > >
> > > Im not sure where you are but this anencephaly
> is
> > > more common in the UK than any other country in
> the
> > > world, and caucasian women are the highest risk
> > > group.
> > >
> > > I know its hard, i really do, but you are sooo
> lucky
> > > to have two healthy children, when my healthy
> girl
> > > is born, I am going to live each day, thankful
> for
> > > everything i have, this puts everything into
> > > perspective, bills, sill quarrels with my
> husband
> > > etc.  This has brought us even closer together.
> > >
> > > I hope you can find the silver lining in this
> too,
> > > devastating as it is, we both have a lot of
> things
> > > to be thankul for.
> > >
> > > Contact me whenever you want.
> > >
> > > Tracey, David, Ella and Evie
> > >
> > > XX
> > >
> > > > From: "Tracie <star712001@...>"
> > > <star712001@...>
> > > > Date: Tue 24/Dec/2002 14:31 GMT
> > > > To: anencephaly@yahoogroups.com
> > > > Subject: [anencephaly] (unknown)
> > > >
> > > >
> > >
> > >
> > >
> >
>
__________________________________________________________________________
> > > Freeserve AnyTime - Go online whenever you want
> for
> > > just £6.99 a month for
> > > your first 3 months, that's HALF PRICE! And then
> > > it's just £13.99 a month
> > > after that.
> > >
> > > For more information visit
> > > http://www.freeserve.com/time/ or call free on
> > > 0800 970 8890
> > >
> > >
> > >
> >
> >
> > __________________________________________________
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> now.
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> >
> >
>
>
>
__________________________________________________________________________
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> just £6.99 a month for
> your first 3 months, that's HALF PRICE! And then
> it's just £13.99 a month
> after that.
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> 0800 970 8890
>
>
>


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Hi sg,
My name is Amanda and I also had an Anencephaly baby.
My Doctor thought it a good idea to start trying again as soon as possible.
He told me to go to the Pharmacy and get Folic Acid tablets to equal 5mg's,
which is about 10 times the normal dosage. I couldn't find these tablets on
the pharmacy shelf I had to ask the assistant and they were behind the
counter. My bottle of folic acid was called "Megafol 5" although I dont know
if they are available to you. (Not sure what country you are in.)
Sg, you will get pregnant again, don't ever loose faith in that.
My thoughts and wishes are with you as well as with the other members of the
group who are walking or have walked in the same foot steps as us.
Warm Regards Amanda
PS: I also bought from the pharmacy a special thermometer, which detects the
best day to conceive. It works. You do need to take your temperature every
morning before jumping out of bed.----- Original Message -----
From: "s g" <kismet5000@...>
To: <anencephaly@yahoogroups.com>
Sent: Sunday, January 05, 2003 2:34 AM
Subject: Re: Re: [anencephaly] (unknown)


> One more question please,
>   You have been told to take 500mg a day for the next
> pregnancy?  They told me 4grams 10 times the normal
> dose per day.  Did you mean 5 grams?
>   Thanks , sg
>
>
>
> --- lethbridge@... wrote:
> > Hi
> >
> > 400mg a day.  Have been told to take 500mg a day for
> > next pregnancy.  So far, both twins are ok, as in
> > the healthy twin has had her 20 week anomaly scan
> > and is fine, and the anencephalic twin is not
> > causing any problems to the pregnancy.  Both are
> > kicking soo much and its lovely to feel. My plan now
> > is to carry both to term as long as there are no
> > other problems.  Want to spend as much time as
> > possible with the poorly twin.
> >
> > May I ask if you  have had any anencephaly
> > experience, or just curious.
> >
> > Thanks
> >
> > Tracey (Ella and Evie)
> > >
> > > From: s g <kismet5000@...>
> > > Date: Thu 02/Jan/2003 02:57 GMT
> > > To: anencephaly@yahoogroups.com
> > > Subject: Re: [anencephaly] (unknown)
> > >
> > > Hi,
> > >   I am sorry to hear of your sad news of one of
> > your
> > > twins.  I am curious , you said you have taken
> > folic
> > > acid .  How many miligrams were you taking?
> > >   Thanks for listening.
> > > --- lethbridge@... wrote:
> > > >
> > > > > Hi
> > > >
> > > > We too are still stunned by this anencephaly.
> > As we
> > > > are having twins, we are blessed with a second
> > > > chance as one of our babies is fine so far (Im
> > 21
> > > > weeks now).  I thought of all the things I did,
> > like
> > > > cleaning the cooker with oven cleaner, drank two
> > > > glasses of red wine once when I thought i had
> > lost
> > > > the babies, walked through a bus station full of
> > oil
> > > > fumes!! Its just pointless, as this has got
> > nothing
> > > > to do with anything you or I have done.  I have
> > been
> > > > told that it could be a grandparent exposed to
> > > > something even.  There is basically no way of
> > > > stopping it.  I have taken folic acid every day,
> > so
> > > > that has made no difference to me.  We found out
> > > > last week that we are having two girls, I feel
> > my
> > > > poorly twin kicking regularly, I love to feel
> > her,
> > > > but it makes me cry too.  But Im lucky to have
> > the
> > > > time I have left with her I guess.  I just have
> > to
> > > > remain positive for my healthy twin.
> > > >
> > > > Its great to hear that you have two healthy
> > > > children.  I have none.  We have lost 4 babies
> > > > before this to ectopics, these are IVF babies.
> > > > Again, IVF has nothing to do with the
> > anencephaly (I
> > > > thought of that too!)
> > > >
> > > > Im not sure where you are but this anencephaly
> > is
> > > > more common in the UK than any other country in
> > the
> > > > world, and caucasian women are the highest risk
> > > > group.
> > > >
> > > > I know its hard, i really do, but you are sooo
> > lucky
> > > > to have two healthy children, when my healthy
> > girl
> > > > is born, I am going to live each day, thankful
> > for
> > > > everything i have, this puts everything into
> > > > perspective, bills, sill quarrels with my
> > husband
> > > > etc.  This has brought us even closer together.
> > > >
> > > > I hope you can find the silver lining in this
> > too,
> > > > devastating as it is, we both have a lot of
> > things
> > > > to be thankul for.
> > > >
> > > > Contact me whenever you want.
> > > >
> > > > Tracey, David, Ella and Evie
> > > >
> > > > XX
> > > >
> > > > > From: "Tracie <star712001@...>"
> > > > <star712001@...>
> > > > > Date: Tue 24/Dec/2002 14:31 GMT
> > > > > To: anencephaly@yahoogroups.com
> > > > > Subject: [anencephaly] (unknown)
> > > > >
> > > > >
> > > >
> > > >
> > > >
> > >
> >
> __________________________________________________________________________
> > > > Freeserve AnyTime - Go online whenever you want
> > for
> > > > just £6.99 a month for
> > > > your first 3 months, that's HALF PRICE! And then
> > > > it's just £13.99 a month
> > > > after that.
> > > >
> > > > For more information visit
> > > > http://www.freeserve.com/time/ or call free on
> > > > 0800 970 8890
> > > >
> > > >
> > > >
> > >
> > >
> > > __________________________________________________
> > > Do you Yahoo!?
> > > Yahoo! Mail Plus - Powerful. Affordable. Sign up
> > now.
> > > http://mailplus.yahoo.com
> > >
> > >
> > >
> > > Your use of Yahoo! Groups is subject to
> > http://docs.yahoo.com/info/terms/
> > >
> > >
> > >
> >
> >
> >
> __________________________________________________________________________
> > Freeserve AnyTime - Go online whenever you want for
> > just £6.99 a month for
> > your first 3 months, that's HALF PRICE! And then
> > it's just £13.99 a month
> > after that.
> >
> > For more information visit
> > http://www.freeserve.com/time/ or call free on
> > 0800 970 8890
> >
> >
> >
>
>
> __________________________________________________
> Do you Yahoo!?
> Yahoo! Mail Plus - Powerful. Affordable. Sign up now.
> http://mailplus.yahoo.com
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>

We are hoping I will be pregnant soon .  When I am
I will definately be checking in for info and support.
  I am currently on 5g folic acid.  4g folic acid plus
prenatal pills.
   sg






--- DMAnzaldi@... wrote:
> In a message dated 1/4/2003 11:01:20 AM Eastern
> Standard Time,
> kismet5000@... writes:
>
>
> >    I did have an anencephalic pregnancy which came
> to
> > a tragic end Sept. 11, 2001.  The same day as the
> > tragegy that struck everyone.
> >
>
> OMG that was the same day we found out our little
> girl had anencephaly.  IT
> was a horrible day.  We went on to have a healthy
> little boy this past August
> 31.  Good luck.
> Dawn
>


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Hi

We wish you well for your next pregnancy, please keep me informed!  Sure it will
happen soon.  I have been told 5 grams not 4, however, if you have that extra
gram in your multivitamins, then you have been taking it anyway. So all of the
very best to you.  Let me know how you get on.  And you can ask as many
questions as you want.  Its great to get a perpective of what other mothers are
being told to take.

Tracey, Ella and Evie X
>
> From: s g <kismet5000@...>
> Date: Sat 04/Jan/2003 16:04 GMT
> To: anencephaly@yahoogroups.com
> Subject: Re: Re: [anencephaly] (unknown)
>
>  One more question please,
>   You have been told to take 500mg a day for the next
> pregnancy?  They told me 4grams 10 times the normal
> dose per day.  Did you mean 5 grams?
>   Thanks , sg
>
>
>
> --- lethbridge@... wrote:
> > Hi
> >
> > 400mg a day.  Have been told to take 500mg a day for
> > next pregnancy.  So far, both twins are ok, as in
> > the healthy twin has had her 20 week anomaly scan
> > and is fine, and the anencephalic twin is not
> > causing any problems to the pregnancy.  Both are
> > kicking soo much and its lovely to feel. My plan now
> > is to carry both to term as long as there are no
> > other problems.  Want to spend as much time as
> > possible with the poorly twin.
> >
> > May I ask if you  have had any anencephaly
> > experience, or just curious.
> >
> > Thanks
> >
> > Tracey (Ella and Evie)
> > >
> > > From: s g <kismet5000@...>
> > > Date: Thu 02/Jan/2003 02:57 GMT
> > > To: anencephaly@yahoogroups.com
> > > Subject: Re: [anencephaly] (unknown)
> > >
> > > Hi,
> > >   I am sorry to hear of your sad news of one of
> > your
> > > twins.  I am curious , you said you have taken
> > folic
> > > acid .  How many miligrams were you taking?
> > >   Thanks for listening.
> > > --- lethbridge@... wrote:
> > > >
> > > > > Hi
> > > >
> > > > We too are still stunned by this anencephaly.
> > As we
> > > > are having twins, we are blessed with a second
> > > > chance as one of our babies is fine so far (Im
> > 21
> > > > weeks now).  I thought of all the things I did,
> > like
> > > > cleaning the cooker with oven cleaner, drank two
> > > > glasses of red wine once when I thought i had
> > lost
> > > > the babies, walked through a bus station full of
> > oil
> > > > fumes!! Its just pointless, as this has got
> > nothing
> > > > to do with anything you or I have done.  I have
> > been
> > > > told that it could be a grandparent exposed to
> > > > something even.  There is basically no way of
> > > > stopping it.  I have taken folic acid every day,
> > so
> > > > that has made no difference to me.  We found out
> > > > last week that we are having two girls, I feel
> > my
> > > > poorly twin kicking regularly, I love to feel
> > her,
> > > > but it makes me cry too.  But Im lucky to have
> > the
> > > > time I have left with her I guess.  I just have
> > to
> > > > remain positive for my healthy twin.
> > > >
> > > > Its great to hear that you have two healthy
> > > > children.  I have none.  We have lost 4 babies
> > > > before this to ectopics, these are IVF babies.
> > > > Again, IVF has nothing to do with the
> > anencephaly (I
> > > > thought of that too!)
> > > >
> > > > Im not sure where you are but this anencephaly
> > is
> > > > more common in the UK than any other country in
> > the
> > > > world, and caucasian women are the highest risk
> > > > group.
> > > >
> > > > I know its hard, i really do, but you are sooo
> > lucky
> > > > to have two healthy children, when my healthy
> > girl
> > > > is born, I am going to live each day, thankful
> > for
> > > > everything i have, this puts everything into
> > > > perspective, bills, sill quarrels with my
> > husband
> > > > etc.  This has brought us even closer together.
> > > >
> > > > I hope you can find the silver lining in this
> > too,
> > > > devastating as it is, we both have a lot of
> > things
> > > > to be thankul for.
> > > >
> > > > Contact me whenever you want.
> > > >
> > > > Tracey, David, Ella and Evie
> > > >
> > > > XX
> > > >
> > > > > From: "Tracie <star712001@...>"
> > > > <star712001@...>
> > > > > Date: Tue 24/Dec/2002 14:31 GMT
> > > > > To: anencephaly@yahoogroups.com
> > > > > Subject: [anencephaly] (unknown)
> > > > >
> > > > >
> > > >
> > > >
> > > >
> > >
> >
> __________________________________________________________________________
> > > > Freeserve AnyTime - Go online whenever you want
> > for
> > > > just £6.99 a month for
> > > > your first 3 months, that's HALF PRICE! And then
> > > > it's just £13.99 a month
> > > > after that.
> > > >
> > > > For more information visit
> > > > http://www.freeserve.com/time/ or call free on
> > > > 0800 970 8890
> > > >
> > > >
> > > >
> > >
> > >
> > > __________________________________________________
> > > Do you Yahoo!?
> > > Yahoo! Mail Plus - Powerful. Affordable. Sign up
> > now.
> > > http://mailplus.yahoo.com
> > >
> > >
> > >
> > > Your use of Yahoo! Groups is subject to
> > http://docs.yahoo.com/info/terms/
> > >
> > >
> > >
> >
> >
> >
> __________________________________________________________________________
> > Freeserve AnyTime - Go online whenever you want for
> > just £6.99 a month for
> > your first 3 months, that's HALF PRICE! And then
> > it's just £13.99 a month
> > after that.
> >
> > For more information visit
> > http://www.freeserve.com/time/ or call free on
> > 0800 970 8890
> >
> >
> >
>
>
> __________________________________________________
> Do you Yahoo!?
> Yahoo! Mail Plus - Powerful. Affordable. Sign up now.
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>
>
>
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>
>
>


__________________________________________________________________________
Freeserve AnyTime - Go online whenever you want for just £6.99 a month for
your first 3 months, that's HALF PRICE! And then it's just £13.99 a month
after that.

For more information visit http://www.freeserve.com/time/ or call free on
0800 970 8890

hi my name is suzette,i am 34 weeks and 3 days pregnant with a
anencephaly baby,Gabriel Michael.we are running into complications
because my amnio water is very highi usually post on
anencephalyblessingsfromabove and have found wonderful support
there.this is my 5 pregnancy and6th child.we have a 9yr old,8yrold
and twin 5 yr olds and a 14 month old.i am a sub-teacher and my
husband is a sgt in the marine corp.we live in north carolina.thank
you ,suzette

Hi my name is debbie, i was told on 8/1/2003 that my baby at 13
weeks, skull bone had not formed properly. Within an hour it was
decided that i should go and have my baby taken away from me the
nest day. I found out an hour before the procedure what was actually
wrong with my baby when i asked "is tthere no chance my baby would
survive?" We had been given no information no support or contact
numbers. Since this i have been on the net after finding out form a
book one of the nurses gave my husband of what this condition was
called even though it had probably been mentioned to us before but
we were in total shock. Since finding out more information i am
finding it hard to come to terms with them making the decision and
not us. can anyone help us with any of this any sort of support or
information would be greatly received. Thanking you in advance deb

Hi

Im sorry that you are feeling the same pain that we have been feeling since I
was 16 weeks pregnant, when we found out that one of our twin babies has
anencephaly. I was told there is absolutely no hope for life for my poorly twin
(two weeks max). I am now 24 weeks pregnant.  Im trying to come to terms with
the real fact that one of my twin girls will only have a very short time with
me.  Im not sure if I could have carried on with the pregnancy if I was only
having one baby, however, I am so looking forward now to holding my poorly twin
for as long as I can.

All I can say is that this is one of the hardest, if not the hardest things I
have ever had to go through.  You will get through this and believe me, I know
how you're feeling.  i try and think that it is just not the right time for my
girl to have a full life yet, but she will have her time in the future.

Also, I have taken folic acid throughout my pregnancy, I have done everything I
can to be as healthy as possible.  So even with that, this can still happen.  I
have been told to take a higher dose of folic acid for longer next time.

Thinking of you, be strong.

Tracey,David, Ella and Evie XXX


> From: "Debbie Bentham" <johnanddeb@...>
> Date: Tue 21/Jan/2003 14:14 GMT
> To: <anencephaly@yahoogroups.com>
> Subject: [anencephaly] Re: please help
>
>
>   ----- Original Message -----
>   From: Debbie Bentham
>   To:
>   Sent: Tuesday, January 21, 2003 1:49 PM
>   Subject: Re: please help
>
>
>
>     ----- Original Message -----
>     From: Debbie Bentham
>     To: anencephaly@yahoogroups.com
>     Sent: Tuesday, January 21, 2003 12:47 PM
>     Subject: please help
>
>
>     Hi my name is debbie, iwas told 8/1/2003 that my baby of 13 weeks skull
bone had not formed properly within an hour i was told that it would be best for
everyone if they take the baby from me the next day. an hour befoe this happened
i was told that my baby had no brain. we left after the procedure with no
information no support nothing. i have since found out the name and found out
for myself on the net what happened. why were we not given a chance to decide? 
can anyone help or has anyone been put in the same position. thanking you in
advance if you can. debbie
>
>


__________________________________________________________________________
Freeserve AnyTime - Go online whenever you want for just £6.99 a month for
your first 3 months, that's HALF PRICE! And then it's just £13.99 a month
after that.

For more information visit http://www.freeserve.com/time/ or call free on
0800 970 8890

Tracie (I think I read that was your name) -

I just joined this group, and felt the need to respond to your email
from Dec 24th.  I also had a healthy child, and then had my Sarah, who
was born with anencephaly (a year ago today, in fact).  I wanted you
to know that having a healthy child does not make your loss any
easier. In some ways, I find it more difficult because I know what I
am missing.  My oldest was just turning 3 when Sarah was born, old
enough to know his baby sister was not coming home, and verbal enough
to ask many tough questions.  While in a way, this helped us to cope
because we had to help him through it, it was also tougher because my
heart broke for him as well, knowing what he would be missing in his
life.

Please know that time will ease your pain, and you will begin to have
more good days than bad. And make sure you give yourself time to deal
with your grief, because it will come out one way or another. When
people said these things to me in those first months after my loss, I
had no idea what they meant, but a year later I do appreciate those
thoughts.

Sabrina

Sabrina,
I just wanted to say Happy 1st Angel Birthday to
Sarah, and I pray for your strength today, and the
coming years ahead.
Take Care,
Nancy
Mommy to Carmelo,  ^+^ Christine ^+^ (anencephalic),
                  Christopher, Caressa, and ^+^ Baby Tristan ^+^ (late
miscar.)

----------
> From: anencephaly@yahoogroups.com
> To: anencephaly@yahoogroups.com
> Subject: [anencephaly] Digest Number 169
> Date: Tuesday, January 28, 2003 6:59 AM
>
> There is 1 message in this issue.
>
> Topics in this digest:
>
>       1. response to star712001 - Dec 24th
>            From: "oursarahbear <tyndall@...>" <tyndall@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Sat, 25 Jan 2003 02:58:23 -0000
>    From: "oursarahbear <tyndall@...>" <tyndall@...>
> Subject: response to star712001 - Dec 24th
>
> Tracie (I think I read that was your name) -
>
> I just joined this group, and felt the need to respond to your email
> from Dec 24th.  I also had a healthy child, and then had my Sarah, who
> was born with anencephaly (a year ago today, in fact).  I wanted you
> to know that having a healthy child does not make your loss any
> easier. In some ways, I find it more difficult because I know what I
> am missing.  My oldest was just turning 3 when Sarah was born, old
> enough to know his baby sister was not coming home, and verbal enough
> to ask many tough questions.  While in a way, this helped us to cope
> because we had to help him through it, it was also tougher because my
> heart broke for him as well, knowing what he would be missing in his
> life.
>
> Please know that time will ease your pain, and you will begin to have
> more good days than bad. And make sure you give yourself time to deal
> with your grief, because it will come out one way or another. When
> people said these things to me in those first months after my loss, I
> had no idea what they meant, but a year later I do appreciate those
> thoughts.
>
> Sabrina
>
>
>
>
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/

>

well this is my first post here.i belong to as and abfa.i just met my
angelGabriel onjan28.he was still born .at 36 weeks he weighted a
mere1 pound 12.8 oz and 11 inches long.very small,much smaller than
expected.e was born with anencephaly and spina bifida.his funeral is
thrusday.i am 29 yrs oldand have 5 other living children.and a
wonderful husband.it is hard to deal with.my amnio water was high so
they had to hurry up and c-section for fear of uterus rupture or the
water to break and the placenta rupture.my milk is now starting to
come in and it is hard.well i think that is all.thank you for letting
me share.suzette  mother to^0^ Gabriel

well this is my first post here.i belong to as and abfa.i just met my
angelGabriel onjan28.he was still born .at 36 weeks he weighted a
mere1 pound 12.8 oz and 11 inches long.very small,much smaller than
expected.e was born with anencephaly and spina bifida.his funeral is
thrusday.i am 29 yrs oldand have 5 other living children.and a
wonderful husband.it is hard to deal with.my amnio water was high so
they had to hurry up and c-section for fear of uterus rupture or the
water to break and the placenta rupture.my milk is now starting to
come in and it is hard.well i think that is all.thank you for letting
me share.suzette  mother to^0^ Gabriel

Dear suzette,
     My thoughts and prayers are with you and your
family.  My birthday is January 28 and i was touched
that your angel was born this day.  My son is now also
with the angels he went to heaven Sept. 14, 2001.  I
know this is a very difficult time yet at the same
time I always thought what better place to be for my
son with the angels.



--- "suzette <iris_suzette@...>"
<iris_suzette@...> wrote:
> well this is my first post here.i belong to as and
> abfa.i just met my
> angelGabriel onjan28.he was still born .at 36 weeks
> he weighted a
> mere1 pound 12.8 oz and 11 inches long.very
> small,much smaller than
> expected.e was born with anencephaly and spina
> bifida.his funeral is
> thrusday.i am 29 yrs oldand have 5 other living
> children.and a
> wonderful husband.it is hard to deal with.my amnio
> water was high so
> they had to hurry up and c-section for fear of
> uterus rupture or the
> water to break and the placenta rupture.my milk is
> now starting to
> come in and it is hard.well i think that is
> all.thank you for letting
> me share.suzette  mother to^0^ Gabriel
>
>


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Hi My first name is Amanda I just found out that i am preg. for the
second time in my life and i am 22 my first time was 3 years ago and
my daughter had anencephaly I went all the way with her it was very
scary but i couldn't deal with the what ifs.   But anyways I am very
very scared of going threw all of this agian they said i am not far
enough to determine anything yet but i still feel like there should
be some real answers to why it happens and how to prevent it but
there is not. I was just wondering if any of you have had this
happen once and gotten pregnaut agian and it be ok or did it happen
agian please help me calm my nerves

Thanks
Amanda

Hi AnnMarie thanks for taking the time to read and respond to me i
appreciate that very much and it helps me to know that there is
several others out there that have gone threw this also. I am only
about 2 maybe 3 weeks now i've had tons of blood work already and
one ultrasound but you could not see a thing.  I am very eager to
see more and know if this is going to happen agian which i am
hopeing not the doctors want to keep a very close eye on me and
watch for any symptoms if there really is any of this reacurring but
so far my doctor has told me that it looks like a normal pregnancy
but there is still that little bit of doubt in my mind but my
husband keeps telling me that it won't happen agian and he is so
happy that were having a baby I don't know whether to be happy with
him or stay worried of something actually happening I am so
confussed right now this last 2 weeks have gone by soooooo slow I
can't wait till I reach week 14 so I can know the truth and i also
want to know what it is.. Well thanks alot you have been so kind and
congratulations on your new pregnancy and I am so happy to hear that
things are going so wonderfull for you.
Thanks Amanda

--- In anencephaly@yahoogroups.com, Angel86911@a... wrote:
> Hi Amanda and Congratulations!
>      How far along are you? I am currently 27 weeks along, they
were able to
> tell if the baby had Anen. at a 14 week level 2 ultrasound. Like
you, I was
> very scared of this baby having it too and time went by very
slowly for me
> until that first ultrasound. As long as you are taking Folic
Acid/prenatals
> and taking good care of yourself, that is the best you can do for
now, so
> just try to relax until your ultrasound, I know its hard. I wish
you the best
> of luck stay in touch and let us know how it goes! :o)
>
> *****Y*****Y*****Y
> Annmarie
> Mom to
> *\o/* Natasha*\o/*
> T Jay T
> &
> 1 2 3      4 5 6
> 7 8 9 10   11 12 13
> 14 15 16 17 18 19
> 20 21 22 23 24 25
> 26 27 28 29 30
> 31 32 33 34
> 35 36 37
> 38 39
> 40
> BABY GIRL!!!

Hi Amanda,
Our first daughter is about to go to medical school, and graduates
this year with honors.  Our second, Angela, was still-born with
anencephaly.  After much thought and prayer... we had our third... who
is now in 8th grade.  Our next is also doing very well, in 6th grade.
  Our last daughter, in 2nd grade has holoprosencephaly, athought to be
unrelated brain disorder.  She is doing well, and is a very happy
little girl.  I hope things go wonderfully for you, though once one
has been through such a stressful and hard time with a baby who was
not able to live on its own, without its moms help, I found it hard to
relax.  The innocence of thinking.... nothing will ever happen to me,
or someone I know... was forever gone...  Take the vitamins with
follic acid helps with neural tube defects.  Most people do NOT have
another child with a neural tube defect.
Blessings on you and your new little one!
Marjie (never forgetting my Angela in heaven!)
--- In anencephaly@yahoogroups.com, "satansgirl1426 <funchic_19@h...>"
<funchic_19@h...> wrote:
> Hi My first name is Amanda I just found out that i am preg. for the
> second time in my life and i am 22 my first time was 3 years ago and
> my daughter had anencephaly I went all the way with her it was very
> scary but i couldn't deal with the what ifs.   But anyways I am very
> very scared of going threw all of this agian they said i am not far
> enough to determine anything yet but i still feel like there should
> be some real answers to why it happens and how to prevent it but
> there is not. I was just wondering if any of you have had this
> happen once and gotten pregnaut agian and it be ok or did it happen
> agian please help me calm my nerves
>
> Thanks
> Amanda