This is a support eGroup for families and medical professionals interested in
sharing information and/or support.

Group Manager: anencephaly-owner@egroups.com

To subscribe, send a message to anencephaly-subscribe@egroups.com or go to the
e-group's home page at http://www.egroups.com/list/anencephaly

I don't want to take you away from Egroups, but I started a bunch of
lists (and some already existed at www.onelist.com), so I was wondering
if you wouldn't mind moving over to onelist (it's free).  If you don't
want to, it's okay, just thought I'd ask.  If you come to the list,
I'll let you be the moderators, so you can run it.  I've already sent a
message to the Anencephaly Support Foundation at http://www.asfhelp.com
to see if they would like to sign up at www.onelist.com.


I have been studying cephalic (brain) disorders for awhile now...I'm
just a parent, but come across lots of parents looking for others with
a similar diagnosis.  I just decided to set-up lists on www.ONELIST.com
to unite all people with brain disorders and because I couldn't find
alot of other lists available.  As people become members of these
lists, I'll let someone that has the diagnosis take them over (moderate
them).  The cephalic (brain) disorder lists I set up are (if they
didn't originally exist already).  Note: The Microcephaly List and
Hydranencephaly Lists were already established at onelist:

Anencephaly
Colpocephaly
Holoprosencephaly
Hydranencephaly
Iniencephaly
Lissencephaly (use to be at www.geolaw.com, but moved to
www.onelist.com)
Megalencephaly or Macrocephaly or Hemimegalencephaly
Microcephaly
Porencephaly
Schizencephaly (Schiz Kids may be moving to www.onelist.com)

Polymicrogyria (Often Related to Schizencephaly, form of Lissencephaly)
Walker Warburg Syndrome (or Muscle-Eye-Brain Disease, form of
Lissencephaly)
There is also a DandyWalker list, a Rare-Disorders list, and a
Septo-Optic Dysplasia list too.

If you want more info on Cephalic Disorders see http://www.ninds.nih.go
v/patients/disorder/cephalic%20disorders/cephalic.htm

I have 2 girls with Walker Warburg Syndrome (WWS), form of
Lissencephaly, and their web page is at http://foliot.demon.co.uk/savag
e/index.htm , and my girls are currently featured in the the Disorder
Zone on the Special Child web site at http://www.specialchild.com

Brenda Savage
Mom to Jessica and Chelsea (both with WWS, form of Lissencephaly)
Lago Vista, TX (near Austin, TX)

There are approximately 24 members on an Anencephaly List at onelist,
but since egroups and onelist are uniting, the members from onelist
will be moving to this list.  FYI.

Brenda Savage

Hi, Brenda Savage. I just sent you a voice-email from my phone, using a free
service from Shoutmail.com. If you have the RealPlayer G2 click on the following
link to hear a streaming RealAudio version of the message.
http://www.shoutmail.com/cgi-bin/smil/start.pl?uid=l3pyyzin5sij0azor0n0

If you would like to download the free RealPlayer G2 go to http://www.real.com

Or alternatively, you can download, listen and reply to a .wav version the
voice-email by clicking below.  If you don't have a sound card you can also hear
the message by phone by clicking below and following the instructions.
http://www.shoutmail.com/cgi-bin/wavaudio.pl?uid=l3pyyzin5sij0azor0n0

You can reply to this message using your regular email, or send me a voice email
from your phone by clicking http://www.shoutmail.com/cgi-bin/instant2.pl


Brenda Savage wrote:
> There are approximately 24 members on an Anencephaly List at onelist,
> but since egroups and onelist are uniting, the members from onelist
> will be moving to this list.  FYI.
>
> Brenda Savage
>
>
> ------------------------------------------------------------------------
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>
>
>
_________________________________________________
To send a voice email to any email address, go to
http://www.shoutmail.com/cgi-bin/instant2.pl
Shoutmail.com, telephone access to your email

Can the owner of this list...add:   makbaby@...   ....please!

Marsha is on the Anencephaly onelist and is trying to move to egroups.

Brenda Savage

-----Original Message-----
From: marsha knight [mailto:makbaby@...]
Sent: Thursday, February 24, 2000 9:06 AM
To: savage@...
Subject: egroups sign up


Brenda,
When I went to the ANENCEPHALY egroups site, I was unable to access it
because I have
hotmail through my school computer.  They have a block on this site because
it contains chat room.  Unless I access this address thru the sign up (I
think) that you send me, I will be unable to access this through my
computer.  Can you help me?  Marsha Knight
______________________________________________________

David,

Can you add makbaby@...

Please !  The 24 people (all anencephaly) that are coming to your list are
very very nice people.

Brenda

-----Original Message-----
From: Savage, Brenda (Abacus)
Sent: Thursday, February 24, 2000 9:15 AM
To: 'Anencephaly List'
Cc: 'Marsha Knight'
Subject: Help ?


Can the owner of this list...add:   makbaby@...   ....please!

Marsha is on the Anencephaly onelist and is trying to move to egroups.

Brenda Savage

-----Original Message-----
From: marsha knight [mailto:makbaby@...]
Sent: Thursday, February 24, 2000 9:06 AM
To: savage@...
Subject: egroups sign up


Brenda,
When I went to the ANENCEPHALY egroups site, I was unable to access it
because I have
hotmail through my school computer.  They have a block on this site because
it contains chat room.  Unless I access this address thru the sign up (I
think) that you send me, I will be unable to access this through my
computer.  Can you help me?  Marsha Knight
______________________________________________________

------------------------------------------------------------------------
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The best way to communicate by email in a group.
Start your own free email group!
http://click.egroups.com/1/1885/1/_/22519/_/951434817/

-- Talk to your group with your own voice!
-- http://www.egroups.com/VoiceChatPage?listName=anencephaly&m=1

Brenda,

I have added Marsha to our list.  I will be happy to add any others but they
can easily add themselves by going to the following address and then click
on the link to join:

http://www.egroups.com/group/anencephally/fullinfo.html

If I can be of any help in this transition, please let me know.

I would also like to invite you to visit my web page for the "Rare Disease
Support Community."  I have been working to build this community for many
months now.  I hope to make it easy for anyone with a rare disorder to make
contact with others who also share their same disorder.

The address for my web page is:

http://www.raredisorders.com   or  http://www.rarediseases.cc

Please feel free to make comments or suggestions.  I am always working at
ways to improve it.

David Hughes, Founder
Rare Disease Support Community
http://www.rarediseases.cc
E-Mail:  rdsc@...


______________________________________________________

David,

Thanks so much for adding Marsha.  I think the rest can sign up
themselves...she just had problems due to hotmail blocking egroups.  If any
others have problems I'll let you know...or you're welcome to join the
onelist group and say you're from the egroups group and you'd be willing to
add everyone...if you'd like.  I'd greatly appreciate it, if you'd like to
do that.  I have 2 girls with Walker-Warburg Syndrome (form of
Lissencephaly).  I set-up alot of these groups and the organization's owners
and members are now on the lists too.

I have a whole bunch of lists (at onelist) that are rarediseases (for the
brain).  Here are the links, if you'd be interested in adding any of them.
If you know of any other lists for these disorders.....PLEASE let me know.
I try to unite everyone...not separate people.

I'll definitely check out your web site...later tonight.  I'm working right
now, but hope to get on the internet later tonight.

Brenda Savage

-------

      Anencephaly Support List:  http://www.onelist.com/community/anencephaly
      and the Anencephaly Support Foundation (email: asf@...) at
      http://www.asfhelp.com

      Colpocephaly Support List:
http://www.onelist.com/community/colpocephaly

      Holoprosencephaly Support List:
http://www.onelist.com/community/holoprosencephaly
      and the Holoprosencephaly Support Site at
http://www.team17.com/~tsmith/HPE
      or http://laran.waisman.wisc.edu/fv/www/lib_holoprosencephaly.htm
      and The Carter Centers for Brain Research at
http://www.stanford.edu/group/hpe

      Hydranencephaly Support List:
http://www.onelist.com/community/hydranencephaly and
      http://www.geocities.com/hotsprings/villa/2157 and
      http://members.xoom.com/hydranenceph or the new
      address of http://onward.to/hydranencephaly

      Iniencephaly Support List:
http://www.onelist.com/community/iniencephaly

      Lissencephaly Network:  http://www.lissencephaly.org
      Lissencephaly Support List:
http://www.onelist.com/community/lissencephaly
      Lissencephaly Launch Pad:  http://www.foliot.demon.co.uk/lissinfo.html
      Miller-Dieker Syndrome (form of Lissencephaly):
      http://www.netaxs.com/%7Ewberman/projects/human/liss.html

      Megalencephaly or Macrocephaly or Hemimegalencephaly Support List:
      http://www.onelist.com/community/megalencephaly
      and Hemimegalencephaly Support Group at
http://users.mcmedia.com.au/~shooper

      Microcephaly Support List:
http://www.onelist.com/community/microcephaly,
      and Microcephaly Network and Listserv (Marc Elewitz, email:
marce@...):
      http://laran.waisman.wisc.edu/fv/www/lib_microc.htm
      and web site:  http://www.ayles.demon.co.uk/microcep.htm

      Porencephaly Support List:
http://www.onelist.com/community/porencephaly
      and http://www.freeyellow.com/members5/wallyworm
      Dandy-Walker Support List:
http://www.onelist.com/community/dandywalker
      Dandy-Walker Home Page:  http://www.geocities.com/heartland/hollow/4868
      Arachanoid Cyst Support List:
http://www.onelist.com/community/arachanoidcyst

      Schizencephaly Support List:
http://www.onelist.com/community/schizkidzbuddies
      and web site:  http://www.geocities.com/heartland/meadows/7384

---------------

      Polymicrogyria Support List:
http://www.onelist.com/community/polymicrogyria

      Walker-Warburg Syndrome (and Muscle-Eye-Brain Disease) Support List:
      http://www.onelist.com/community/walkerwarburg

      Cerebellum (Hypoplasia, Agenesis, Rhombencephalosynapsis, and other
Cerebellum
      Abnormalities) List:  http://www.onelist.com/community/cerebellum
      and Children with Cerebellar Hypoplasia:
http://www0.delphi.com/cerebellar

      Joubert Syndrome List:
http://www.onelist.com/community/joubertsyndrome
      and Joubert Syndrome Foundation, Inc. at
http://www.joubertfoundation.com

      Encephalocele Support List:
http://www.onelist.com/community/encephalocele

      Arnold Chiari Malformation Listserv:  http://www.chiari.com/acm.htm


      Agenesis of the Corpus Collasum (ACC) Listserv Welcome Site:
      http://www.geocities.com/hotsprings/villa/2648/accwelcome.html

      The Hydrocephalus Association and Listserv (HYCEPH-L):
      http://neurosurgery.mgh.harvard.edu/ha


-------


-----Original Message-----
From: David Hughes [mailto:davidhu@...]
Sent: Thursday, February 24, 2000 6:05 PM
To: anencephaly@egroups.com
Subject: [anencephaly] Re: Help ?



Brenda,

I have added Marsha to our list.  I will be happy to add any others but they

can easily add themselves by going to the following address and then click
on the link to join:

http://www.egroups.com/group/anencephally/fullinfo.html

If I can be of any help in this transition, please let me know.

I would also like to invite you to visit my web page for the "Rare Disease
Support Community."  I have been working to build this community for many
months now.  I hope to make it easy for anyone with a rare disorder to make
contact with others who also share their same disorder.

The address for my web page is:

http://www.raredisorders.com   or  http://www.rarediseases.cc

Please feel free to make comments or suggestions.  I am always working at
ways to improve it.

David Hughes, Founder
Rare Disease Support Community
http://www.rarediseases.cc
E-Mail:  rdsc@...


______________________________________________________

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eGroups.com Home: http://www.egroups.com/group/anencephaly/
http://www.egroups.com - Simplifying group communications

David,

I checked out your web site at http://www.raredisorders.com

You have lots of diseases listed...that's great.  I'll start referring
others to your web site.  A good site to make a posting of you web page
is at http://www.specialchild.com , then click on Bulletin Board.  Lots
of people find these lists via that that web site.

I'm just curious...what made you start this web site.  Do you have a
child with a rare disease or do you yourself have a rare disease?

Brenda Savage

Linda,

Welcome to the list.  I hate to inform you that we are moving to the
Anencephaly list at http://www.egroups.com .  This list here at onelist will
be deleted in the very near future.  I'm so sorry you're caught right in the
middle of this.

Brenda Savage

----
Original Message:
    Date: Tue, 22 Feb 2000 01:45:37 -0000
    From: dfran302@...
Subject: New member

Hi! I'm new to this group.  I am expecting a baby with anencephaly in
May.  I am looking for support and information.  I hope to make new
friends who understand this difficult time in my family's life.
Thanks,
Linda

http://www.egroups.com/group/anencephally/fullinfo.html


or

http://www.egroups.com , then search on anencephaly

Whoops....I'm sending this to the wrong site...need to send to old list (at
onelist).

Sorry about that.

Brenda

-----Original Message-----
From: Savage, Brenda (Abacus)
Sent: Friday, February 25, 2000 8:57 AM
To: 'WL - Anencephaly Listserv'
Subject: [anencephaly] Welcome Linda


Linda,

Welcome to the list.  I hate to inform you that we are moving to the
Anencephaly list at http://www.egroups.com .  This list here at onelist will
be deleted in the very near future.  I'm so sorry you're caught right in the
middle of this.

Brenda Savage

----
Original Message:
    Date: Tue, 22 Feb 2000 01:45:37 -0000
    From: dfran302@...
Subject: New member

Hi! I'm new to this group.  I am expecting a baby with anencephaly in
May.  I am looking for support and information.  I hope to make new
friends who understand this difficult time in my family's life.
Thanks,
Linda


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Just wanted to let you know, that I am unsubscribing you from the
anencephaly list at onelist, as you sign up on this list, here at egroups.
I will be deleting the list at onelist within the week.

Brenda Savage

I have a really stupid question, and hope I don't upset anyone....but if
they know a baby is anencephalic inutero, why do they let you carry the baby
to term?  Are there any anencephalic children that live beyond birth?

Brenda Savage

I'm sorry that this move to egroups cut into the drinking water discussion.


Brenda Savage

Well for me it wasn't a matter of anyone "letting" me carry to term. My
Jessica had a condition incompatible with life ,but that did not make her
any less my beautiful ,much wanted daughter. If any of my other children had
an accident and were declared brain dead would I love them any less????No I
would love them just the same. Just as I loved my Jessica. She still had a
soul, she still moved inside me, she still was beautiful despite her
anomaly. Most of society and the medical community think that our babies
with anencephaly are monsters. This is such archaic thinking. When you see a
man with only one leg should he not be allowed to live because he is not
perfect? Or a woman who is blind and deaf ,such as Helen Keller, not be
allowed to live because she is not "perfect". Should my step sister have
terminated her pregnancy because she found out at 7mths that her son would
have a genetic disorder that would casue him to be autistic and have
seizures, that he would never be "perfect" No! No one should have the right
to tell anyone whether they can or cannot have their child. That is up to
the Parent. No one "let" me continue my pregnancy. I CHOSE to continue my
pregnancy. God gave me my precious Jessica and I was blessed to have been
her mother. As for the remainder of the question, there have been some
babies that have lived for hours, days , months and even years. They are the
exceptions because generally they are still born or live only a few hours.
Would I have wanted my child to live "like that" as some people say. Yes!
Yes!Yes!I would have cherished every moment I could have had with my
daughter.
Tammy Hajdo ^i^ Jessica's Mom
-----Original Message-----
From: Savage, Brenda (Abacus) <brenda.savage-eds@...>
To: 'WL - Anencephaly Listserv' <anencephaly@egroups.com>
Date: Sunday, February 27, 2000 12:17 PM
Subject: [anencephaly] anencephalic baby inutero


>I have a really stupid question, and hope I don't upset anyone....but if
>they know a baby is anencephalic inutero, why do they let you carry the
baby
>to term?  Are there any anencephalic children that live beyond birth?
>
>Brenda Savage
>
>
>------------------------------------------------------------------------
>Show your style!  Choose from 6 great card designs when you
>apply for Capital One's 9.9% Fixed APR Visa Platinum.
>http://click.egroups.com/1/1894/1/_/22519/_/951670426/
>
>-- Check out your group's private Chat room
>-- http://www.egroups.com/ChatPage?listName=anencephaly&m=1
>
>

> I have a really stupid question, and hope I don't
> upset anyone....but if
> they know a baby is anencephalic inutero, why do
> they let you carry the baby
> to term?  Are there any anencephalic children that
> live beyond birth?

Actually, the choice is the mother's on whether she
wants to end the pregnancy or continue.  My baby was
diagnosed at 19 weeks, and we had the option of
inducing early.  I could have induced at any time
during my pregnancy from that point on.  Doctors don't
really like their patients to carry to term, at least
mine didn't, but if there are no health risks it is
fine.  It really isn't the doctor's decision to make a
woman terminate her pregnancy in any circumstances.
The last word is always the parents.  It is a personal
and difficult decision to make.  I have met many women
who have decided to carry to term, and also who have
induced early- and they all had their reasons for
their decisions.  Also, yes some anencephalic babies
do live.  I think the most is a couple of months.  The
average is a couple of hours to days if the baby is
not stillborn.  50% are stillborn.  I have heard of
one case where an anencephalic baby lived for 5 years-
but was in a comatose state her whole life.  I also
met an early childhood ed teacher who said she had an
anencephalic student who lived to 2 years- but she had
a skull and no brain.  In my daughter's case, I
carried her to 42 weeks, was induced and she lived 2
minutes.  We found out later that she was unable to
breath because she also had a condition called
Hypoplastic lungs.  Her autopsy report said that is
not uncommon for anencephalic infants to have this
defect also.  I hope this answers some of your
questions.

Michelle
Jordan 3yrs, Jasmine 7/12/99 fullterm/anencephaly,
Baby due 9/16/00
__________________________________________________
Do You Yahoo!?
Talk to your friends online with Yahoo! Messenger.
http://im.yahoo.com

Very well put!  My thoughts exactly!
-----Original Message-----
From: jhajdo <jhajdo@...>
To: anencephaly@egroups.com <anencephaly@egroups.com>
Date: Sunday, February 27, 2000 11:08 AM
Subject: [anencephaly] Re: anencephalic baby inutero


>Well for me it wasn't a matter of anyone "letting" me carry to term. My
>Jessica had a condition incompatible with life ,but that did not make her
>any less my beautiful ,much wanted daughter. If any of my other children
had
>an accident and were declared brain dead would I love them any less????No I
>would love them just the same. Just as I loved my Jessica. She still had a
>soul, she still moved inside me, she still was beautiful despite her
>anomaly. Most of society and the medical community think that our babies
>with anencephaly are monsters. This is such archaic thinking. When you see
a
>man with only one leg should he not be allowed to live because he is not
>perfect? Or a woman who is blind and deaf ,such as Helen Keller, not be
>allowed to live because she is not "perfect". Should my step sister have
>terminated her pregnancy because she found out at 7mths that her son would
>have a genetic disorder that would casue him to be autistic and have
>seizures, that he would never be "perfect" No! No one should have the right
>to tell anyone whether they can or cannot have their child. That is up to
>the Parent. No one "let" me continue my pregnancy. I CHOSE to continue my
>pregnancy. God gave me my precious Jessica and I was blessed to have been
>her mother. As for the remainder of the question, there have been some
>babies that have lived for hours, days , months and even years. They are
the
>exceptions because generally they are still born or live only a few hours.
>Would I have wanted my child to live "like that" as some people say. Yes!
>Yes!Yes!I would have cherished every moment I could have had with my
>daughter.
>Tammy Hajdo ^i^ Jessica's Mom
>-----Original Message-----
>From: Savage, Brenda (Abacus) <brenda.savage-eds@...>
>To: 'WL - Anencephaly Listserv' <anencephaly@egroups.com>
>Date: Sunday, February 27, 2000 12:17 PM
>Subject: [anencephaly] anencephalic baby inutero
>
>
>>I have a really stupid question, and hope I don't upset anyone....but if
>>they know a baby is anencephalic inutero, why do they let you carry the
>baby
>>to term?  Are there any anencephalic children that live beyond birth?
>>
>>Brenda Savage
>>
>>
>>------------------------------------------------------------------------
>>Show your style!  Choose from 6 great card designs when you
>>apply for Capital One's 9.9% Fixed APR Visa Platinum.
>>http://click.egroups.com/1/1894/1/_/22519/_/951670426/
>>
>>-- Check out your group's private Chat room
>>-- http://www.egroups.com/ChatPage?listName=anencephaly&m=1
>>
>>
>
>
>------------------------------------------------------------------------
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>
>
>

Michelle, I agree with your respone that the last word is always the
parents, but don't you think that drs often scare their patients into
inducing early or terminating. My old dr's associate was appalled and told
me "no one ever has these babies. People do abortions left and right" In
fact I was told that I could not induce early at 17wks they would have to
perform a D&E. I've talked to woman who were told that if they didn't
terminate that they would hurt their chances of ever having a future
pregnancy. And instead of presenting all the pros and cons of continuing,
they have been told that their health was in danger and they could die.One
woman I talked to in Africa told me she wasn't given a choice , in fact she
didn't know you could carry a baby "like that" to term. I don't judge
anyone. I have friends who induced early as well as carried to term. We all
make the choices that are best for us, but what really gets to me is the
attitude most of the medical community has that our babies are not babies
anymore but "it's".I still have alot of anger towards this type of thinking
, hence my passionate responses. The ironic thing is I used to be one of
those so called ....(uncompassionate isn't really the word...maybe unaware
is better) people. I worked as a Resp Therapist and remember one special
little baby. He was essentially brain dead but his parents did everything
they could to keep him alive. They gavaged (tube fed) him, regulated his
temperature, they gave him oxygen. I watched this couple for several wks and
asked a co-worker why they just didn't let him go. He was basically gone
wasn't he? What I failed to see was their unending- undying love for their
son. I failed to see inside to his soul and that while his shell was gone
his spirit was not. Not until I had been faced with my own broken child ,did
I ever come to understand this. My hope is to be able to educate the medical
community one day on patients continuing a pregnancy. My dr just looked at
me and did nothing for several months. We sat there and stared at each other
until he was too busy to see me because he had other real patients. Needless
to say I found another dr. Maybe someday the choice will actually be the
parents and all parents and their babies will be treated with respect and
dignity. It is not my intention to hurt anyone by my response and if I have
said anything to upset anyone I am sorry.
-----Original Message-----
From: Michelle Rogers <micci_rog@...>
To: anencephaly@egroups.com <anencephaly@egroups.com>
Date: Sunday, February 27, 2000 2:28 PM
Subject: [anencephaly] Re: anencephalic baby inutero


>
>
>> I have a really stupid question, and hope I don't
>> upset anyone....but if
>> they know a baby is anencephalic inutero, why do
>> they let you carry the baby
>> to term?  Are there any anencephalic children that
>> live beyond birth?
>
>Actually, the choice is the mother's on whether she
>wants to end the pregnancy or continue.  My baby was
>diagnosed at 19 weeks, and we had the option of
>inducing early.  I could have induced at any time
>during my pregnancy from that point on.  Doctors don't
>really like their patients to carry to term, at least
>mine didn't, but if there are no health risks it is
>fine.  It really isn't the doctor's decision to make a
>woman terminate her pregnancy in any circumstances.
>The last word is always the parents.  It is a personal
>and difficult decision to make.  I have met many women
>who have decided to carry to term, and also who have
>induced early- and they all had their reasons for
>their decisions.  Also, yes some anencephalic babies
>do live.  I think the most is a couple of months.  The
>average is a couple of hours to days if the baby is
>not stillborn.  50% are stillborn.  I have heard of
>one case where an anencephalic baby lived for 5 years-
>but was in a comatose state her whole life.  I also
>met an early childhood ed teacher who said she had an
>anencephalic student who lived to 2 years- but she had
>a skull and no brain.  In my daughter's case, I
>carried her to 42 weeks, was induced and she lived 2
>minutes.  We found out later that she was unable to
>breath because she also had a condition called
>Hypoplastic lungs.  Her autopsy report said that is
>not uncommon for anencephalic infants to have this
>defect also.  I hope this answers some of your
>questions.
>
>Michelle
>Jordan 3yrs, Jasmine 7/12/99 fullterm/anencephaly,
>Baby due 9/16/00
>__________________________________________________
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>Talk to your friends online with Yahoo! Messenger.
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oops I forgot to sign my last post.
Tammy Hajdo ^i^(12-28-98) Jessica's Mom
also mom to Jackie, Alyssa, James, Nick and Tony born 12-20-99

-----Original Message-----
From: Michelle Rogers <micci_rog@...>
To: anencephaly@egroups.com <anencephaly@egroups.com>
Date: Sunday, February 27, 2000 2:28 PM
Subject: [anencephaly] Re: anencephalic baby inutero


>
>
>> I have a really stupid question, and hope I don't
>> upset anyone....but if
>> they know a baby is anencephalic inutero, why do
>> they let you carry the baby
>> to term?  Are there any anencephalic children that
>> live beyond birth?
>
>Actually, the choice is the mother's on whether she
>wants to end the pregnancy or continue.  My baby was
>diagnosed at 19 weeks, and we had the option of
>inducing early.  I could have induced at any time
>during my pregnancy from that point on.  Doctors don't
>really like their patients to carry to term, at least
>mine didn't, but if there are no health risks it is
>fine.  It really isn't the doctor's decision to make a
>woman terminate her pregnancy in any circumstances.
>The last word is always the parents.  It is a personal
>and difficult decision to make.  I have met many women
>who have decided to carry to term, and also who have
>induced early- and they all had their reasons for
>their decisions.  Also, yes some anencephalic babies
>do live.  I think the most is a couple of months.  The
>average is a couple of hours to days if the baby is
>not stillborn.  50% are stillborn.  I have heard of
>one case where an anencephalic baby lived for 5 years-
>but was in a comatose state her whole life.  I also
>met an early childhood ed teacher who said she had an
>anencephalic student who lived to 2 years- but she had
>a skull and no brain.  In my daughter's case, I
>carried her to 42 weeks, was induced and she lived 2
>minutes.  We found out later that she was unable to
>breath because she also had a condition called
>Hypoplastic lungs.  Her autopsy report said that is
>not uncommon for anencephalic infants to have this
>defect also.  I hope this answers some of your
>questions.
>
>Michelle
>Jordan 3yrs, Jasmine 7/12/99 fullterm/anencephaly,
>Baby due 9/16/00
>__________________________________________________
>Do You Yahoo!?
>Talk to your friends online with Yahoo! Messenger.
>http://im.yahoo.com
>
>------------------------------------------------------------------------
>Get what you deserve with NextCard Visa! Rates as low as 2.9%
>Intro or 9.9% Fixed APR, online balance transfers, Rewards Points,
>no hidden fees, and much more! Get NextCard today and get the
>credit youdeserve! Apply now! Get your NextCard Visa at:
>http://click.egroups.com/1/912/1/_/22519/_/951679712/
>
>-- Talk to your group with your own voice!
>-- http://www.egroups.com/VoiceChatPage?listName=anencephaly&m=1
>
>

Hello,

My name is Anne Andis and my husband, myself, and our friends the
Coates' run the Anencephaly Support Foundation.  You can visit our site
at:

http://www.asfhelp.com

We are a group that is committed to helping parents who have been
diagnosed with an anencephalic pregnancy carry that pregnancy to term.
Although I don't have the resources to join and participate in this
forum, I wanted to let you know of our existence and ask you to refer
anyone who may need our support to our site.

Thanks,

Anne Andis

--- jhajdo <jhajdo@...> wrote:
> Michelle, I agree with your respone that the last
> word is always the
> parents, but don't you think that drs often scare
> their patients into
> inducing early or terminating.

Yes, I think so.  My doctors did not do this, though
they leaned toward termination, they gave me the
facts.  I just wanted the facts- could I carry this
baby and yes, they said it would be a normal
pregnancy.  It was.  I tried to switch doctors toward
the end of my pregnancy, and I got a new firsthand
knowledge of what other doctors can be like.  This
doctor bullied me saying things like "Your health is
in jeopard", "I won't let you go to your due date" and
"can we really consider this a human?"  I left before
I said something to him like, "Can we consider you
human?"  Yes, I think that some doctors do not give
all the facts, so that the woman will "get it over
with".  I even read one prolife website that was
giving all their arguments against abortion, except
their one exception- yes, you guessed it- anencephaly.
  They figured that anencephaly was not a moral dillema
because the baby had no brain.  I was about 7 months
pregnant with Jasmine when I read that, and I felt so
nauseated by this attitude.  I did get the impression
though, that my doctors didn't quite consider me a
"real patient" anymore, since my baby wasn't going to
live.  At least not a "real" prenatal patient.  I was
looked at a bit more like a mental case, and I got
alot of talk about whether I had sought counseling
yet.  Mostly they just let me alone through my
pregnancy and let me make decisions, which was what I
wanted.  They didn't tell me what I was going to do
and that really helped.

Michelle

__________________________________________________
Do You Yahoo!?
Talk to your friends online with Yahoo! Messenger.
http://im.yahoo.com

Okay, my question was really stupid.  I didn't realize the baby was still
alive and moving, when you carried it to term.  I would never be able to
abort a child that is alive...just my personal beliefs.  I so glad you all
have so much love for your children.  I'm getting ready to foster 2 children
(12 and 10) that are normal, but the parents don't want them anymore.  Such
an insane world.

Brenda Savage

Anne,

I'm glad your on this list.  I was referring new members on the
ex-anencephaly list at onelist...to your ASF Support Foundation.  How many
members do you have in the foundation now?

Do you have Get-Togethers?

Brenda Savage

-----Original Message-----
From: ASF [mailto:asf@...]
Sent: Sunday, February 27, 2000 2:40 PM
To: anencephaly@egroups.com
Subject: [anencephaly] Re: anencephalic baby inutero


Hello,

My name is Anne Andis and my husband, myself, and our friends the
Coates' run the Anencephaly Support Foundation.  You can visit our site
at:

http://www.asfhelp.com

We are a group that is committed to helping parents who have been
diagnosed with an anencephalic pregnancy carry that pregnancy to term.
Although I don't have the resources to join and participate in this
forum, I wanted to let you know of our existence and ask you to refer
anyone who may need our support to our site.

Thanks,

Anne Andis


------------------------------------------------------------------------
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Mostly doctors just don't want to deal with it.  Actually a few, very few,
can live up to several months. A nurse that was helpingme knew of a baby that
lived 8 months.  My doctor knew of one that lived 6 months.  A television
personality had agranddaughter that had anencephaly.  She lived for about 4
months.  She died because her parents made her get a cold.  It was the
hardest thing they ever did, but seeing their little girl struggle for breath
was too painful.

Of course you have doctors that are "dumb" for lack of a better word.  With
my first daughter, a doctor who never even saw me wanted to know what kind of
anencephaly my daughter had.  I told him the fatal kind.  I don't know.

My second daughter had enough brain matter to live for up to 6 weeks the
doctors thought.  Mostly doctors I think don't want to be accused of murder
and same with the hospitals.  Thanks Mary H.

Ann Marie
Wife to Ray
Mom to Ean, Erin, Kate, ^i^ Loren (9/20/99 - anencephaly)
Sequim, WA
rayann@...

I am Ann Marie (32) married to dh Ray (37).  We are the homebirthing,
homeschooling parents of Ean
(8),  Erin (5), and Kate (2+).  Our son Loren was stillborn at 34 weeks last
9/20/99.  His
anencephaly was diagnosed 18 hours before birth and he died during labor.
We are currently 14 weeks pregnant with our fifth blessing.
I am an RN and lactation consultant and Ray is a physical therapist.  We moved
from Seattle, WA to a
more rural location four years ago.
If you want more info about us or would like to read Loren's entire birth story,
just e-mail me
back!
Warm Regards,
Ann Marie
Wife to Ray
Mom to Ean, Erin, Kate, ^i^ Loren (9/20/99 - anencephaly), "Sprig" due 8/28/00
Sequim, WA
rayann@...

Ann Marie
Wife to Ray
Mom to Ean, Erin, Kate, ^i^ Loren (9/20/99 - anencephaly)
Sequim, WA
rayann@...

Hi. I just sent you a voice-email from my phone, using a free service from
Shoutmail.com. If you have the RealPlayer G2 click on the following link to hear
a streaming RealAudio version of the message.
http://www.shoutmail.com/cgi-bin/smil/start.pl?uid=79f8mb4if0ftpu2kwt96

If you would like to download the free RealPlayer G2 go to http://www.real.com

Or alternatively, you can download, listen and reply to a .wav version of the
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the message by phone by clicking below and following the instructions.
http://www.shoutmail.com/cgi-bin/wavaudio.pl?uid=79f8mb4if0ftpu2kwt96

You can reply to this message using your regular email, or send me a voice email
from your phone by clicking http://www.shoutmail.com/cgi-bin/instant2.pl


Savage, Brenda (Abacus) wrote:
> Okay, my question was really stupid.  I didn't realize the baby was still
> alive and moving, when you carried it to term.  I would never be able to
> abort a child that is alive...just my personal beliefs.  I so glad you all
> have so much love for your children.  I'm getting ready to foster 2 children
> (12 and 10) that are normal, but the parents don't want them anymore.  Such
> an insane world.
>
> Brenda Savage
>
> ------------------------------------------------------------------------
> Tired of missing calls while online? Now you can surf the Internet
> without worrying about missing important calls! CallWave's FREE
> Internet Answering Machine lets you hear who's calling while online.
> http://click.egroups.com/1/1927/1/_/22519/_/951691123/
>
> -- Talk to your group with your own voice!
> -- http://www.egroups.com/VoiceChatPage?listName=anencephaly&m=1
>
>
>
_________________________________________________
To send a voice email to any email address, go to
http://www.shoutmail.com/cgi-bin/instant2.pl
Shoutmail.com, telephone access to your email

Hi, Michelle Rogers. I just sent you a voice-email from my phone, using a free
service from Shoutmail.com. If you have the RealPlayer G2 click on the following
link to hear a streaming RealAudio version of the message.
http://www.shoutmail.com/cgi-bin/smil/start.pl?uid=0d666c7xgjyaogsbo9va

If you would like to download the free RealPlayer G2 go to http://www.real.com

Or alternatively, you can download, listen and reply to a .wav version the
voice-email by clicking below.  If you don't have a sound card you can also hear
the message by phone by clicking below and following the instructions.
http://www.shoutmail.com/cgi-bin/wavaudio.pl?uid=0d666c7xgjyaogsbo9va

You can reply to this message using your regular email, or send me a voice email
from your phone by clicking http://www.shoutmail.com/cgi-bin/instant2.pl


Michelle Rogers wrote:
>
>
> --- jhajdo <jhajdo@...> wrote:
> > Michelle, I agree with your respone that the last
> > word is always the
> > parents, but don't you think that drs often scare
> > their patients into
> > inducing early or terminating.
>
> Yes, I think so.  My doctors did not do this, though
> they leaned toward termination, they gave me the
> facts.  I just wanted the facts- could I carry this
> baby and yes, they said it would be a normal
> pregnancy.  It was.  I tried to switch doctors toward
> the end of my pregnancy, and I got a new firsthand
> knowledge of what other doctors can be like.  This
> doctor bullied me saying things like "Your health is
> in jeopard", "I won't let you go to your due date" and
> "can we really consider this a human?"  I left before
> I said something to him like, "Can we consider you
> human?"  Yes, I think that some doctors do not give
> all the facts, so that the woman will "get it over
> with".  I even read one prolife website that was
> giving all their arguments against abortion, except
> their one exception- yes, you guessed it- anencephaly.
>  They figured that anencephaly was not a moral dillema
> because the baby had no brain.  I was about 7 months
> pregnant with Jasmine when I read that, and I felt so
> nauseated by this attitude.  I did get the impression
> though, that my doctors didn't quite consider me a
> "real patient" anymore, since my baby wasn't going to
> live.  At least not a "real" prenatal patient.  I was
> looked at a bit more like a mental case, and I got
> alot of talk about whether I had sought counseling
> yet.  Mostly they just let me alone through my
> pregnancy and let me make decisions, which was what I
> wanted.  They didn't tell me what I was going to do
> and that really helped.
>
> Michelle
>
> __________________________________________________
> Do You Yahoo!?
> Talk to your friends online with Yahoo! Messenger.
> http://im.yahoo.com
>
> ------------------------------------------------------------------------
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