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#1552 From: anencephaly@yahoogroups.com
Date: Sun May 1, 2005 5:47 pm
Subject: Reminder - danielle left for heaven anencephaly@yahoogroups.com
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We would like to remind you of this upcoming event.

danielle left for heaven

Date: Sunday, May 1, 2005
Time: 2:00PM EDT (GMT-04:00)

danielle's 2nd year up in heaven

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#1551 From: anencephaly@yahoogroups.com
Date: Sun May 1, 2005 6:02 am
Subject: Reminder - danielle left for heaven anencephaly@yahoogroups.com
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We would like to remind you of this upcoming event.

danielle left for heaven

Date: Sunday, May 1, 2005
Time: 2:00PM EDT (GMT-04:00)

danielle's 2nd year up in heaven

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#1550 From: David and Sabrina Tyndall <tyndall@...>
Date: Sun May 1, 2005 1:23 am
Subject: Re: I am back! oursarahbear
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Marie -

Congratulations on baby Drew, and welcome back to the group.  I hope all
continues to go well for you.  Try not to feel guilty - I do the same
thing too, thinking about "now Sarah turned 3 in January and she would
be walking and talking."  I think it just makes our younger babies even
that much more special.

Take care and write when you need someone as well.  Talk with you soon.

Sabrina
Mommy to Matthew (6), Sarah in heaven (Jan 2002), and Emma (almost 2!)

Marie Blair wrote:

>Hello everyone!  It's me, Marie.  I will try to make this update as short as
>I can.  I have not been on here since September, I think.  My cousin,
>Kimberly who is a part of the anencephaly group has checked my emails and
>told me a few of the posts and that there have been several new members that
>have had misfortunes of their own.  I am terribly sorry for all of the
>experiences but I hope to get to know you and feel that we can lean on each
>other.  I will try to look through as many recent posts as I can so that I
>know what is going on.
>
>As for me...  Oh my, where do I begin?!  I have made such great friends from
>my yahoo groups over the past couple of years since my loss and oh how I
>have missed you all terribly over the past few months.  Since I have posted
>last, my wonderful little Matthew has turned 3 (January, 28) and he became a
>big brother for the second time on November 6, 2004.  The first time was
>March 17, 2003 when his sister Brianna was born into Heaven due to
>anencephaly.  I needed you all so much during the last couple of months of
>my last pregnancy.  I felt a little guilty and still have an uneasy time
>with my thoughts of Brianna and my new little guy that came after her.  By
>the way his name is Drew (Andrew Bryan).  After having her I veiwed every
>milestone of Matthew's as....."Ok Matthew turned 3 and he should have a
>little sister that will be 2 in July (that was my due date).  Now I do the
>same with Drew.  So now Brianna is a little sister AND a big sister.  I just
>can't wait for the day that I can explain all this to my boys and they can
>understand that they have a sister too.  It hurts so much not to have a
>little girl here with me.  But I would not trade my little guys for anything
>in the world either.
>
>I suppose I should stop before I write a novel.  I will send you pictures
>soon and hope that all is well with everyone of you.  Remember, I am here
>for everyone and I would love to meet the new~b's.
>
>
>
>Take care,
>Marie
>
>Mommy to my angels
>Matthew 3
>Brianna-In Heaven
>Drew almost 6 months
>
>
>
>
>
>
>Yahoo! Groups Links
>
>
>
>
>
>
>
>

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#1549 From: "Marie Blair" <iamapeach@...>
Date: Fri Apr 29, 2005 12:50 am
Subject: FW: Philosophy about life peaches03292000
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Philosophy about life, live it well....

GREAT TRUTHS THAT LITTLE CHILDREN HAVE LEARNED:
1) No matter how hard you try, you can't baptize cats.
2) When your Mom is mad at your Dad, don't let her brush your hair.
3) If your sister hits you, don't hit her back. They always catch the
second person.
4) Never ask your 3-year old brother to hold a tomato.
5) You can't trust dogs to watch your food.
6) Don't sneeze when someone is cutting your hair.
7) Never hold a Dust-Buster and a cat at the same time.
8) You can't hide a piece of broccoli in a glass of milk.
9) Don't wear polka-dot underwear under white shorts.
10) The best place to be when you're sad is Grandpa's lap.

GREAT TRUTHS THAT ADULTS HAVE LEARNED:
1) Raising teenagers is like nailing Jell-O to a tree.
2) Wrinkles don't hurt.
3) Families are like fudge...mostly sweet, with a few nuts.
4) Today's mighty oak is just yesterday's nut that held its ground.
5) Laughing is good exercise. It's like jogging on the inside.
6) Middle age is when you choose your cereal for the fiber, not the
toy.

GREAT TRUTHS ABOUT GROWING OLD
1) Growing old is mandatory; growing up is optional.
2) Forget the health food. I need all the preservatives I can get.
3) When you fall down, you wonder what else you can do while you're
down
there.
4) You're getting old when you get the same sensation from a rocking>chair
that you once got from a roller coaster.
5) It's frustrating when you know all the answers but nobody bothers to
ask
you the questions.
6) Time may be a great healer, but it's a lousy beautician.
7) Wisdom comes with age, but sometimes age comes alone.

THE FOUR STAGES OF LIFE:

1) You believe in Santa Claus.
2) You don't believe in Santa Claus.
3) You are Santa Claus.
4) You look like Santa Claus.

SUCCESS:

At age 4 success is . . not peeing in your pants.
At age 12 success is . having friends.
At age 16 success is . . . having a drivers license.
At age 35 success is . having money.
At age 50 success is . . . having money.
At age 75 success is . having friends.
At age 80 success is . not peeing in your pants.

Pass this on to someone who could use a laugh.

Always remember to forget the troubles that pass your way; BUT NEVER
forget
the blessings that come each day.
Have a wonderful day with many *smiles*

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#1548 From: "Marie Blair" <iamapeach@...>
Date: Thu Apr 28, 2005 5:21 pm
Subject: I am back! peaches03292000
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Hello everyone!  It's me, Marie.  I will try to make this update as short as
I can.  I have not been on here since September, I think.  My cousin,
Kimberly who is a part of the anencephaly group has checked my emails and
told me a few of the posts and that there have been several new members that
have had misfortunes of their own.  I am terribly sorry for all of the
experiences but I hope to get to know you and feel that we can lean on each
other.  I will try to look through as many recent posts as I can so that I
know what is going on.

As for me...  Oh my, where do I begin?!  I have made such great friends from
my yahoo groups over the past couple of years since my loss and oh how I
have missed you all terribly over the past few months.  Since I have posted
last, my wonderful little Matthew has turned 3 (January, 28) and he became a
big brother for the second time on November 6, 2004.  The first time was
March 17, 2003 when his sister Brianna was born into Heaven due to
anencephaly.  I needed you all so much during the last couple of months of
my last pregnancy.  I felt a little guilty and still have an uneasy time
with my thoughts of Brianna and my new little guy that came after her.  By
the way his name is Drew (Andrew Bryan).  After having her I veiwed every
milestone of Matthew's as....."Ok Matthew turned 3 and he should have a
little sister that will be 2 in July (that was my due date).  Now I do the
same with Drew.  So now Brianna is a little sister AND a big sister.  I just
can't wait for the day that I can explain all this to my boys and they can
understand that they have a sister too.  It hurts so much not to have a
little girl here with me.  But I would not trade my little guys for anything
in the world either.

I suppose I should stop before I write a novel.  I will send you pictures
soon and hope that all is well with everyone of you.  Remember, I am here
for everyone and I would love to meet the new~b's.



Take care,
Marie

Mommy to my angels
Matthew 3
Brianna-In Heaven
Drew almost 6 months

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#1547 From: Angel's mommy <angelmomlovesangel@...>
Date: Thu Apr 28, 2005 3:59 am
Subject: Re: Anencephaly 3/27/05 angelmomlove...
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Hi Molly, I am so sorry for your loss. I lost my daughter, Angel, in Oct. 1998. I was not on the pill, so I don't know about this being a cause. I had my daughter at 20 weeks. She lived for ten hours and seven minutes. I too had to have her early so I wouldn't have to have another c-section, I had already had two and was due to have another. She was so tiny. I was put on folic acid after words, I since then have had a healthy baby boy, who is four now. Take your folic acid and pray to God. Your little Leo will watch over you, you will feel his love.

Email me if you need to talk,

Angel's mommy

Edward <edmollyrex@...> wrote:

My name is Molly. I just today found this message bord.I have been reading through some of the messages and have found them helpfull. I had a son on 3/27/05 that was anencephaly. This is what happened I went in for my 20 week check up and sonogram on 3/25 to see if the baby was a boy or girl and to make sure every thing was going right. Keep in mind my husband had to work due to he was saving all his vacation time for when I had the baby. When they where doing the sonogram they noticed that the baby was anencephaly. When they told me my heart broke in two. They called my husband to come be with me. When he got to the hospital where my doctors app. was they gave us the most difficult decision of our lives of what to do. They gave us the choise to have him then, wait (Have to have a c-section due to he would have been to big to have natraly.), or wait and see if I misscared. We chose to have my son at that time. The hardest part about all of this is knowig that my son still had a heart beat and was moving around. On 3/25 they addmited me in to the hospital and for the next two day I was in and out of labor till 7:20am on Easter sunday may son (Leo John Edward)was born(stillborn). My doctor has now put me on 4mg of folic acid. Does anyone know if there is any thing else I can do to make sure this does not happen again? Also do you know the chances of it happening twice to someone? I wish this had happened due to something I had done or because of genetics, but I ate right and took the vitamins I was supose to exept I only took 800mcg of folic acid. There is no family history of this happening in both my family and my husbands. Does anyone know if birth control pills have any thing to do with what causes this? I ask this because I was just off birth control two weeks when I got pregnet and not knowing if the pills had any thing to do with what happened to Leo I will not go back on them till after I have a nother baby. If anyone can answers to these questions please let me know. Leo's mom

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#1546 From: Jami <bean_and_cjs_mom@...>
Date: Wed Apr 27, 2005 5:25 am
Subject: Re: Anencephaly 3/27/05 bean_and_cjs...
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Molly,

How I wish that you didn't have to go through this. First of all I am very sorry for you loss. Like you I too lost a son to Anencephaly. I carried to almost turm though. I found out through the alpha fetal protien test though. It is hard to make the choice to go to turm because it wasn't what I wanted. My husband is in the military and our insurance would not pay for an induction before 38 weeks (unless it was indangering my life.) I went on to 35 weeks and 5 days. I was huge because I had to much amniotic fliud. I wish that I had all the answers to make all of this go away for you and me and all of the other women that go through this. But there are no magic answers. No one knows what causes anencephaly. The can make guesses but there are no garenties. I have had 3 children and then this. Yeah it is hard to deal with. Some nights I lie awake and cry cause I just wanted to have a baby with my husband. I just wanted my kids to know they'er brother Jacob. I know that this is not easy for you. But some times it is nice to know that you have your own personal angel to watch over you. Please take care and know that there are people that you can talk to. If you ever need to talk e mail me at jamifrakes@...

Jami missing Jacob 6-10-04

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#1545 From: "Kerri" <bluegum6@...>
Date: Wed Apr 27, 2005 1:49 am
Subject: RE: Anencephaly 3/27/05 jasperscally
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Hi Molly

My name is Kerri and on May 26th 2003 I had an anecephalic baby. I have found no evidence, but I have heard that the pill can reduce the effiicency of folic acid absorbing into the body. I too had only been off the pill for 2 - 3 weeks before I fell pregnant and was only taking 800 mcg of folic acid. I have since had a beautiful healthy baby girl. I didn't go back on the pill and I took 5mg of folic acid for 3 months before I conceived again.

Hope this helps

-----Original Message-----
From: anencephaly@yahoogroups.com [mailto:anencephaly@yahoogroups.com]On Behalf Of Edward
Sent: Friday, 22 April 2005 7:35 AM
To: anencephaly@yahoogroups.com
Subject: [anencephaly] Anencephaly 3/27/05

My name is Molly. I just today found this message bord.I have been reading through some of the messages and have found them helpfull. I had a son on 3/27/05 that was anencephaly. This is what happened I went in for my 20 week check up and sonogram on 3/25 to see if the baby was a boy or girl and to make sure every thing was going right. Keep in mind my husband had to work due to he was saving all his vacation time for when I had the baby. When they where doing the sonogram they noticed that the baby was anencephaly. When they told me my heart broke in two. They called my husband to come be with me. When he got to the hospital where my doctors app. was they gave us the most difficult decision of our lives of what to do. They gave us the choise to have him then, wait (Have to have a c-section due to he would have been to big to have natraly.), or wait and see if I misscared. We chose to have my son at that time. The hardest part about all of this is knowig that my son still had a heart beat and was moving around. On 3/25 they addmited me in to the hospital and for the next two day I was in and out of labor till 7:20am on Easter sunday may son (Leo John Edward)was born(stillborn). My doctor has now put me on 4mg of folic acid. Does anyone know if there is any thing else I can do to make sure this does not happen again? Also do you know the chances of it happening twice to someone? I wish this had happened due to something I had done or because of genetics, but I ate right and took the vitamins I was supose to exept I only took 800mcg of folic acid. There is no family history of this happening in both my family and my husbands. Does anyone know if birth control pills have any thing to do with what causes this? I ask this because I was just off birth control two weeks when I got pregnet and not knowing if the pills had any thing to do with what happened to Leo I will not go back on them till after I have a nother baby. If anyone can answers to these questions please let me know. Leo's mom

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#1544 From: heather spencer <heaver_2002@...>
Date: Tue Apr 26, 2005 8:08 pm
Subject: Re: Anencephaly 3/27/05 heaver_2002
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Molly,

Hi im heather my daughter was born on 1-18-05 with this horrible thing too. i was told that they really dont know what causes it. at least thats what my doctor told me. i have heard though here that it can be heridty (cant spell) I dont know though. all i know is that it does help if you take folic acid and it does help to make sure you eat right too. dont know what the two have in common but i have been doing it all. im on bitrh control right now so i hope it doesnt have anything to do with it.

Good luck and sorry for your loss,

Amelias Mommy. (heather)

Edward <edmollyrex@...> wrote:

My name is Molly. I just today found this message bord.I have been reading through some of the messages and have found them helpfull. I had a son on 3/27/05 that was anencephaly. This is what happened I went in for my 20 week check up and sonogram on 3/25 to see if the baby was a boy or girl and to make sure every thing was going right. Keep in mind my husband had to work due to he was saving all his vacation time for when I had the baby. When they where doing the sonogram they noticed that the baby was anencephaly. When they told me my heart broke in two. They called my husband to come be with me. When he got to the hospital where my doctors app. was they gave us the most difficult decision of our lives of what to do. They gave us the choise to have him then, wait (Have to have a c-section due to he would have been to big to have natraly.), or wait and see if I misscared. We chose to have my son at that time. The hardest part about all of this is knowig that my son still had a heart beat and was moving around. On 3/25 they addmited me in to the hospital and for the next two day I was in and out of labor till 7:20am on Easter sunday may son (Leo John Edward)was born(stillborn). My doctor has now put me on 4mg of folic acid. Does anyone know if there is any thing else I can do to make sure this does not happen again? Also do you know the chances of it happening twice to someone? I wish this had happened due to something I had done or because of genetics, but I ate right and took the vitamins I was supose to exept I only took 800mcg of folic acid. There is no family history of this happening in both my family and my husbands. Does anyone know if birth control pills have any thing to do with what causes this? I ask this because I was just off birth control two weeks when I got pregnet and not knowing if the pills had any thing to do with what happened to Leo I will not go back on them till after I have a nother baby. If anyone can answers to these questions please let me know. Leo's mom

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#1543 From: Melissa Dublo <myltlelily@...>
Date: Mon Apr 25, 2005 8:12 pm
Subject: Re: Anencephaly 3/27/05 myltlelily
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Molly,

Oh sweetheart, you had your baby just a few days after I had mine. 800mcg of folic acid should be more than enough. All you can do is try. Nobody ever expects to grow up and have babies with problems. You should talk to a good genetic doctor. Find out who is the best. And when I say best-do the research. I have had doctors in the past that do all their work on paper and never do testing. You can also find a doctor (hard to find) that will take a sample of your hair and send it to a lab for a small fee. I have know about one doctor near myself, but this kind of testing is "unfounded". They say that, just like in FBI, they can test your folicals to see what is going on inside your body. Vitamins and nutrient defiency kinda stuff. Otherwise, the chances are about 1 in 50 if you have one baby with anencephaly, if you have had 2 babies with anencephaly, the chances change to 1 in 25, so on ....

Good luck with your endevour.

Melissa

(Lily's mom)

Edward <edmollyrex@...> wrote:

My name is Molly. I just today found this message bord.I have been reading through some of the messages and have found them helpfull. I had a son on 3/27/05 that was anencephaly. This is what happened I went in for my 20 week check up and sonogram on 3/25 to see if the baby was a boy or girl and to make sure every thing was going right. Keep in mind my husband had to work due to he was saving all his vacation time for when I had the baby. When they where doing the sonogram they noticed that the baby was anencephaly. When they told me my heart broke in two. They called my husband to come be with me. When he got to the hospital where my doctors app. was they gave us the most difficult decision of our lives of what to do. They gave us the choise to have him then, wait (Have to have a c-section due to he would have been to big to have natraly.), or wait and see if I misscared. We chose to have my son at that time. The hardest part about all of this is knowig that my son still had a heart beat and was moving around. On 3/25 they addmited me in to the hospital and for the next two day I was in and out of labor till 7:20am on Easter sunday may son (Leo John Edward)was born(stillborn). My doctor has now put me on 4mg of folic acid. Does anyone know if there is any thing else I can do to make sure this does not happen again? Also do you know the chances of it happening twice to someone? I wish this had happened due to something I had done or because of genetics, but I ate right and took the vitamins I was supose to exept I only took 800mcg of folic acid. There is no family history of this happening in both my family and my husbands. Does anyone know if birth control pills have any thing to do with what causes this? I ask this because I was just off birth control two weeks when I got pregnet and not knowing if the pills had any thing to do with what happened to Leo I will not go back on them till after I have a nother baby. If anyone can answers to these questions please let me know. Leo's mom

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#1542 From: "Evonne" <Evonne2004@...>
Date: Mon Apr 25, 2005 6:00 pm
Subject: Re: Anencephaly 3/27/05 angel_eyes_uk0
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hello,

im so sorry to hear your story.

my gp gave me the extra folic acid to take after i had my anecephalic
daughter, Holly in 2002. i was also told that there is no particular reason
for this to happen, and that i was just unlucky.

i now have a son, who with both my daughters, i cherish with all my heart.

take care of yourself, leo will be also taking care of you too

evonne
xxx
----- Original Message -----
From: "Edward" <edmollyrex@...>
To: <anencephaly@yahoogroups.com>
Sent: Thursday, April 21, 2005 10:35 PM
Subject: [anencephaly] Anencephaly 3/27/05


>
>
>
> My name is Molly. I just today found this message bord.I have been
> reading through some of the messages and have found them helpfull. I
> had a son on 3/27/05 that was anencephaly. This is what happened I
> went in for my 20 week check up and sonogram on 3/25 to see if the
> baby was a boy or girl and to make sure every thing was going right.
> Keep in mind my husband had to work due to he was saving all his
> vacation time for when I had the baby. When they where doing the
> sonogram they noticed that the baby was anencephaly. When they told
> me my heart broke in two. They called my husband to come be with me.
> When he got to the hospital where my doctors app. was they gave us
> the most difficult decision of our lives of what to do. They gave us
> the choise to have him then, wait (Have to have a c-section due to he
> would have been to big to have natraly.), or wait and see if I
> misscared. We chose to have my son at that time. The hardest part
> about all of this is knowig that my son still had a heart beat and
> was moving around. On 3/25 they addmited me in to the hospital and
> for the next two day I was in and out of labor till 7:20am on Easter
> sunday may son (Leo John Edward)was born(stillborn).
> My doctor has now put me on 4mg of folic acid. Does anyone know if
> there is any thing else I can do to make sure this does not happen
> again? Also do you know the chances of it happening twice to someone?
> I wish this had happened due to something I had done or because of
> genetics, but I ate right and took the vitamins I was supose to exept
> I only took 800mcg of folic acid. There is no family history of this
> happening in both my family and my husbands. Does anyone know if
> birth control pills have any thing to do with what causes this? I ask
> this because I was just off birth control two weeks when I got
> pregnet and not knowing if the pills had any thing to do with what
> happened to Leo I will not go back on them till after I have a nother
> baby. If anyone can answers to these questions please let me know.
>
> Leo's mom
>
>
>
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>
>

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#1541 From: "Edward" <edmollyrex@...>
Date: Thu Apr 21, 2005 9:35 pm
Subject: Anencephaly 3/27/05 cyedragon
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My name is Molly. I just today found this message bord.I have been
reading through some of the messages and have found them helpfull. I
had a son on 3/27/05 that was anencephaly. This is what happened I
went in for my 20 week check up and sonogram on 3/25 to see if the
baby was a boy or girl and to make sure every thing was going right.
Keep in mind my husband had to work due to he was saving all his
vacation time for when I had the baby. When they where doing the
sonogram they noticed that the baby was anencephaly. When they told
me my heart broke in two. They called my husband to come be with me.
When he got to the hospital where my doctors app. was they gave us
the most difficult decision of our lives of what to do. They gave us
the choise to have him then, wait (Have to have a c-section due to he
would have been to big to have natraly.), or wait and see if I
misscared. We chose to have my son at that time. The hardest part
about all of this is knowig that my son still had a heart beat and
was moving around. On 3/25 they addmited me in to the hospital and
for the next two day I was in and out of labor till 7:20am on Easter
sunday may son (Leo John Edward)was born(stillborn).
  My doctor has now put me on 4mg of folic acid. Does anyone know if
there is any thing else I can do to make sure this does not happen
again? Also do you know the chances of it happening twice to someone?
I wish this had happened due to something I had done or because of
genetics, but I ate right and took the vitamins I was supose to exept
I only took 800mcg of folic acid. There is no family history of this
happening in both my family and my husbands. Does anyone know if
birth control pills have any thing to do with what causes this? I ask
this because I was just off birth control two weeks when I got
pregnet and not knowing if the pills had any thing to do with what
happened to Leo I will not go back on them till after I have a nother
baby. If anyone can answers to these questions please let me know.

Leo's mom

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#1540 From: David and Sabrina Tyndall <tyndall@...>
Date: Fri Apr 15, 2005 3:14 pm
Subject: Re: Folic Acid (Asam Folat) oursarahbear
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For me, after I had my baby with anencephaly, my doctors prescribed 4 mg of folic acid (3 mg in addition to the 1 mg already contained in my prenatal vitamin), which I began taking for three months before trying to conceive again. I stayed on it through the first trimester of my next pregnancy and had a healthy baby. Folic acid is water-soluble, which I believe means that whatever your body doesn't need or use, it expels so that you don't build up toxic levels.

I hope this is helpful.
Sabrina, Mommy to Matthew, Sarah in heaven, and Emma

mahmilan sugiyo wrote:

Dear Pak Harry ..
Thak you for your information, so far as we know there
are some reason why a baby got anencephaly, please let
me know if we are wrong. One of them is caused by
deficiency of folic acid, second could be caused by
toxoplasm, third caused by disparity of chromosom. The
two first could be controlled by ourselves, however
the third one must involved genetic experts to
overcome.
We do not know , it is dangerous or not if we give the
mother more & more folic acid. Our doctor say it is
okay, but we in doubting indeed.
Regards. --- Harry Agus <harry_agus@...> wrote:
---------------------------------
First of all, let me introduce my self. I'm Harry
Samputra Agus. An Indonesian Lawyer and a lecturer in
University of Indonesia is my occupation. This is my
first letter to you all. Before, My wife Amalia
actives in this group. My first doughter, Cahaya
(Enlightment) die because of this dillematic illness
and sickness.
Dillematic because it seperated to 2 situation. What
we can do or controlled and what we cannot do or even
imagined. My second son Hakim Cendekia (Knowledgable
Judge) is under our controlled. He is 100% healthy.
Heredity is not our controlled background. But folic
acid is. What in our control is "the paradigm of
causes"
--- jo falor <poohqabear@...> wrote:

The Specialist who I go to told me that it doubbled
cause it was on mu side and my husbands side..
Joann,
Marie and I were wondering who told you that the
fact that your husband's cousin's baby had an NTD
that it doubled your chances?? We were curious was
it a doctor or a genetics person??
Thanks,
Kimberly and Marie
--- In anencephaly@yahoogroups.com, "Marian"
<lambsie2003@y...> wrote:

From what I know, I have a son with a mild

cephalic disorder and for two years I have educated my self in college and in
hospitals to learn more. I trust the NINDS website. It is the
national institute for neurological disorders. They say that 70% of NTD
can be prevented with folic acid taken six weeks before pregnancy and
during pregnancy. That is a huge margin. From what I know
alot of it has to do with folic acid and malabsorbtion. I have sought
the help of a genetic doctor a couple of hours from where I live. They are going to run DNA and metabolic testing on my living son and
see what they can find out. I am very interested in knowing.
Melissa

Hi, I had a daughter stillborn in 1972 due to

anencephaly. I did not

know the cause of her death until recently. At the

time I was told

that the baby didn't develope properly and that I

had carried too

much fluid. I was huge. Melanie weighed 2lb 2oz.

at 36 weeks. At a

recent visit to my G.P. I asked the exact cause

and was told it was

anencephaly. Now my concern is, my son, (I have

two sons), and his

wife is expecting their first child, our first

grandchild, and I am

worried in case there is a chance of NTD (neural

tube defect) being

hereditary. My husband's brother when he was born

had what they

called a tail at the base of his spine, what is

in fact is colosed

spina bifida. He is a healthy man, had no problems

during his life

because of this, and is the father of four healthy

daughters.

Are there older mothers who had a anencephaly baby

and have gone on

to have healthy children and are now proud

grandparents? I would

love to hear from anyone who could put my mind at

ease.
---------------------------------
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#1539 From: mahmilan sugiyo <mahmilan@...>
Date: Fri Apr 15, 2005 6:36 am
Subject: Re: Folic Acid (Asam Folat) mahmilan
Offline
Send Email

Dear Pak Harry ..

Thak you for your information, so far as we know there
are some reason why a baby got anencephaly, please let
me know if we are wrong. One of them is caused by
deficiency of folic acid,  second could be caused by
toxoplasm, third caused by disparity of chromosom. The
two first could be controlled by ourselves, however
the third one must involved genetic experts to
overcome.

We do not know , it is dangerous or not if we give the
mother more & more folic acid. Our doctor say it is
okay, but we in doubting indeed.

Regards.

--- Harry Agus <harry_agus@...> wrote:

---------------------------------
First of all, let me introduce my self. I'm Harry
Samputra Agus. An Indonesian Lawyer and a lecturer in
University of Indonesia is my occupation. This is my
first letter to you all. Before, My wife Amalia
actives in this group. My first doughter, Cahaya
(Enlightment) die because of this dillematic illness
and sickness.
Dillematic because it seperated to 2 situation. What
we can do or controlled and what we cannot do or even
imagined. My second son Hakim Cendekia (Knowledgable
Judge) is under our controlled. He is 100% healthy.
Heredity is not our controlled background. But folic
acid is. What in our control is "the paradigm of
causes"
--- jo falor <poohqabear@...> wrote:
> The Specialist who I go to told me that it doubbled
> cause it was on mu side and my husbands side..
>
> Joann,
>
>  Marie and I were wondering who told you that the
> fact that your husband's cousin's baby had an NTD
> that it doubled your chances?? We were curious was
> it a doctor or a genetics person??
>
>
> Thanks,
>
> Kimberly and Marie
>
>
> --- In anencephaly@yahoogroups.com, "Marian"
> <lambsie2003@y...> wrote:
> > From what I know, I have a son with a mild
> cephalic disorder and for
> two years I have educated my self in college and in
> hospitals to learn
> more.  I trust the NINDS website.  It is the
> national institute for
> neurological disorders.  They say that 70% of NTD
> can be prevented
> with folic acid taken six weeks before pregnancy and
> during
> pregnancy.  That is a huge margin.  From what I know
> alot of it has to
> do with folic acid and malabsorbtion.  I have sought
> the help of a
> genetic doctor a couple of hours from where I live.
> They are going to
> run DNA and metabolic testing on my living son and
> see what they can
> find out.  I am very interested in knowing.
> Melissa
> >
> > Hi, I had a daughter stillborn in 1972 due to
> anencephaly. I did not
> > know the cause of her death until recently. At the
> time I was told
> > that the baby didn't develope properly and that I
> had carried too
> > much fluid. I was huge. Melanie weighed 2lb 2oz.
> at 36 weeks. At a
> > recent visit to my G.P. I asked the exact cause
> and was told it was
> > anencephaly. Now my concern is, my son, (I have
> two sons), and his
> > wife is expecting their first child, our first
> grandchild, and I am
> > worried in case there is a chance of NTD (neural
> tube defect) being
> > hereditary. My husband's brother when he was born
> had what they
> > called a tail at the base of his spine, what is
> in fact is colosed
> > spina bifida. He is a healthy man, had no problems
> during his life
> > because of this, and is the father of four healthy
> daughters.
> > Are there older mothers who had a anencephaly baby
> and have gone on
> > to have healthy children and are now proud
> grandparents? I would
> > love to hear from anyone who could put my mind at
> ease.
>
>
>
>
>
>
>
>
>
> ---------------------------------
> Do you Yahoo!?
> Yahoo! Small Business - Try our new resources site!
>
> ---------------------------------
> Do you Yahoo!?
> Yahoo! Small Business - Try our new resources site!
>
> ---------------------------------
> Yahoo! Groups Links
>
>    To visit your group on the web, go to:
> http://groups.yahoo.com/group/anencephaly/
>
>    To unsubscribe from this group, send an email to:
> anencephaly-unsubscribe@yahoogroups.com
>
>    Your use of Yahoo! Groups is subject to the
> Yahoo! Terms of Service.
>
>
>
>
> ---------------------------------
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Reply | Forward | Messages in this Topic (4)

#1538 From: Angel's mommy <angelmomlovesangel@...>
Date: Fri Apr 15, 2005 3:02 am
Subject: Re: My baby is said to have anencephaly. angelmomlove...
Offline
Send Email

Michelle,

I am so sorry for you. I know the pain very well. I wish I could help you with the decision that has to be made. It isn't an easy one. You will know the choice in your heart. No one can make this desicion for you. It is so unfair to want a child that can not make it in this lifetime. I had my daughter at 20 weeks. My doctor wouldn't let me go on with the pregnancy because I would have had to have her by c-section. She knew that I wanted to have another child, so we had her early. She was the only child I got to have naturaly. I will always cherish this. I would like to talk to you anytime.

Angel's mommy

Michelle <mimib17@...> wrote:

Hello everyone my name is Michelle. About a month ago i had an ultrasound done at about 12 weeks into my pregnancy. The next day me, my mother, and the baby's father got called into my doctor's office and she told us that she was more than sure that my child had exencephaly which as you know comes to be anencephaly. I had to make a decision on what i wanted to do about this. We went to get a second opinion and the doctor told us the same thing. The decision I made after doing nothing but thinking about everything was to terminate the pregnancy. I really didnt know what to do because me and the baby's father are not together any more and i was alone basically in making this decision because i barely got to talk to him about anything. I went to the hospital on Thursday and they induced by labor in order for me to just have the baby now. (I am 16 weeks.) By Friday I had not dialated at all so they sent me home and said to come back Sunday and they would try again. Well after hours of crying and considering every other option I realized i wanted to wait my until full term and just have the baby so if i could spend any time with my child at all i would. I finally talked to the baby's father and he wants to do the same thing. The only problem is that i never get a chance to talk to him any more and i have noone else that is there for me to talk to because a lot of people do not understand why i want to do this. If there is anyone out there who would like to just help me get through this i would really appreciate someone to talk to about this. My screen name on yahoo is mimib17 and my screen name on aol istant messenger is justalil2crazy or lovemimi1717. Or you can email me at mimib17@... Thanks, **~Michelle~**

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#1537 From: Angel's mommy <angelmomlovesangel@...>
Date: Fri Apr 15, 2005 2:52 am
Subject: Re: Re: Hereditary angelmomlove...
Offline
Send Email

We were told by our genetics counselor that our other child have a higher chance of having a child born with anencephaly. She also told us to let other family members know so that their doctors can be on the look out for it.

Angel's mommy

kim flathers <sgttibbs96@...> wrote:

Joann,

Marie and I were wondering who told you that the fact that your husband's cousin's baby had an NTD that it doubled your chances?? We were curious was it a doctor or a genetics person??

Thanks,

Kimberly and Marie

jo falor <poohqabear@...> wrote:

Hello my name is joann and i am sorry to say yes it can run in the family my mom had a baby in 1981 he was stillbirth cause of water on the brain and she too was huge but my husbands cousin had a baby with NTD so that doubled my chance i didnt know that but i did have a normal baby with my first preg.. with my first husband my first child with my hubby now was anencephaly baby but i didnt take any folic acid the specialist told me to take folic acid at least 6 months before trying the longer you take folic acid will be better. so it really depends on the families... love always joann falor My mom is a pround grandma of 5 grandchildren... I am the only one who had a anencephaly baby but my mom is still pround of her Danielle ..

myltlelily <myltlelily@...> wrote:
--- In anencephaly@yahoogroups.com, "Marian" <lambsie2003@y...> wrote: > From what I know, I have a son with a mild cephalic disorder and for two years I have educated my self in college and in hospitals to learn more. I trust the NINDS website. It is the national institute for neurological disorders. They say that 70% of NTD can be prevented with folic acid taken six weeks before pregnancy and during pregnancy. That is a huge margin. From what I know alot of it has to do with folic acid and malabsorbtion. I have sought the help of a genetic doctor a couple of hours from where I live. They are going to run DNA and metabolic testing on my living son and see what they can find out. I am very interested in knowing. Melissa > > Hi, I had a daughter stillborn in 1972 due to anencephaly. I did not > know the cause of her death until recently. At the time I was told > that the baby didn't develope properly and that I had carried too > much fluid. I was huge. Melanie weighed 2lb 2oz. at 36 weeks. At a > recent visit to my G.P. I asked the exact cause and was told it was > anencephaly. Now my concern is, my son, (I have two sons), and his > wife is expecting their first child, our first grandchild, and I am > worried in case there is a chance of NTD (neural tube defect) being > hereditary. My husband's brother when he was born had what they > called a tail at the base of his spine, what is in fact is colosed > spina bifida. He is a healthy man, had no problems during his life > because of this, and is the father of four healthy daughters. > Are there older mothers who had a anencephaly baby and have gone on > to have healthy children and are now proud grandparents? I would > love to hear from anyone who could put my mind at ease.

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#1536 From: kim flathers <sgttibbs96@...>
Date: Thu Apr 14, 2005 5:18 pm
Subject: Re: Folic Acid (Asam Folat) sgttibbs96
Offline
Send Email

Thank you Harry for your imput. It is greatly appreciated. Marie hadn't heard of it being genetics or hereditary and had wondered who all had been told it was and where they got their information from.

Thanks,

Kimberly and Marie

Harry Agus <harry_agus@...> wrote:

First of all, let me introduce my self. I'm Harry Samputra Agus. An Indonesian Lawyer and a lecturer in University of Indonesia is my occupation. This is my first letter to you all. Before, My wife Amalia actives in this group. My first doughter, Cahaya (Enlightment) die because of this dillematic illness and sickness. Dillematic because it seperated to 2 situation. What we can do or controlled and what we cannot do or even imagined. My second son Hakim Cendekia (Knowledgable Judge) is under our controlled. He is 100% healthy. Heredity is not our controlled background. But folic acid is. What in our control is "the paradigm of causes" --- jo falor <poohqabear@...> wrote: > The Specialist who I go to told me that it doubbled > cause it was on mu side and my husbands side.. > > Joann, > > Marie and I were wondering who told you that the > fact that your husband's cousin's baby had an NTD > that it doubled your chances?? We were curious was > it a doctor or a genetics person?? > > > Thanks, > > Kimberly and Marie > > > --- In anencephaly@yahoogroups.com, "Marian" > <lambsie2003@y...> wrote: > > From what I know, I have a son with a mild > cephalic disorder and for > two years I have educated my self in college and in > hospitals to learn > more. I trust the NINDS website. It is the > national institute for > neurological disorders. They say that 70% of NTD > can be prevented > with folic acid taken six weeks before pregnancy and > during > pregnancy. That is a huge margin. From what I know > alot of it has to > do with folic acid and malabsorbtion. I have sought > the help of a > genetic doctor a couple of hours from where I live. > They are going to > run DNA and metabolic testing on my living son and > see what they can > find out. I am very interested in knowing. > Melissa > > > > Hi, I had a daughter stillborn in 1972 due to > anencephaly. I did not > > know the cause of her death until recently. At the > time I was told > > that the baby didn't develope properly and that I > had carried too > > much fluid. I was huge. Melanie weighed 2lb 2oz. > at 36 weeks. At a > > recent visit to my G.P. I asked the exact cause > and was told it was > > anencephaly. Now my concern is, my son, (I have > two sons), and his > > wife is expecting their first child, our first > grandchild, and I am > > worried in case there is a chance of NTD (neural > tube defect) being > > hereditary. My husband's brother when he was born > had what they > > called a tail at the base of his spine, what is > in fact is colosed > > spina bifida. He is a healthy man, had no problems > during his life > > because of this, and is the father of four healthy > daughters. > > Are there older mothers who had a anencephaly baby > and have gone on > > to have healthy children and are now proud > grandparents? I would > > love to hear from anyone who could put my mind at > ease. > > > > > > > > > > --------------------------------- > Do you Yahoo!? > Yahoo! Small Business - Try our new resources site! > > --------------------------------- > Do you Yahoo!? > Yahoo! Small Business - Try our new resources site! > > --------------------------------- > Yahoo! Groups Links > > To visit your group on the web, go to: > http://groups.yahoo.com/group/anencephaly/ > > To unsubscribe from this group, send an email to: > anencephaly-unsubscribe@yahoogroups.com > > Your use of Yahoo! Groups is subject to the > Yahoo! Terms of Service. > > > > > --------------------------------- > Do you Yahoo!? > Yahoo! Small Business - Try our new resources site! __________________________________ Yahoo! Mail Mobile Take Yahoo! Mail with you! Check email on your mobile phone. http://mobile.yahoo.com/learn/mail

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#1535 From: kim flathers <sgttibbs96@...>
Date: Thu Apr 14, 2005 5:11 pm
Subject: Re: Re: Hereditary sgttibbs96
Offline
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Because it was on both sides, got it. Thanks for the response. Marie hadn't heard anything like that suggesting genetics or hereditary and was curious. Just the lack of folic acid.

BTW, I got her computer running and hopefully here very very soon she will be on the net again. Just needs to get broadband installed at home and she'll be all set. I know she's been anxious about getting back to you all.

Thanks again,

Kimberly and Marie

jo falor <poohqabear@...> wrote:

The Specialist who I go to told me that it doubbled cause it was on mu side and my husbands side..

Joann,

Marie and I were wondering who told you that the fact that your husband's cousin's baby had an NTD that it doubled your chances?? We were curious was it a doctor or a genetics person??

Thanks,

Kimberly and Marie

--- In anencephaly@yahoogroups.com, "Marian" <lambsie2003@y...> wrote: > From what I know, I have a son with a mild cephalic disorder and for two years I have educated my self in college and in hospitals to learn more. I trust the NINDS website. It is the national institute for neurological disorders. They say that 70% of NTD can be prevented with folic acid taken six weeks before pregnancy and during pregnancy. That is a huge margin. From what I know alot of it has to do with folic acid and malabsorbtion. I have sought the help of a genetic doctor a couple of hours from where I live. They are going to run DNA and metabolic testing on my living son and see what they can find out. I am very interested in knowing. Melissa > > Hi, I had a daughter stillborn in 1972 due to anencephaly. I did not > know the cause of her death until recently. At the time I was told > that the baby didn't develope properly and that I had carried too > much fluid. I was huge. Melanie weighed 2lb 2oz. at 36 weeks. At a > recent visit to my G.P. I asked the exact cause and was told it was > anencephaly. Now my concern is, my son, (I have two sons), and his > wife is expecting their first child, our first grandchild, and I am > worried in case there is a chance of NTD (neural tube defect) being > hereditary. My husband's brother when he was born had what they > called a tail at the base of his spine, what is in fact is colosed > spina bifida. He is a healthy man, had no problems during his life > because of this, and is the father of four healthy daughters. > Are there older mothers who had a anencephaly baby and have gone on > to have healthy children and are now proud grandparents? I would > love to hear from anyone who could put my mind at ease.

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#1534 From: Harry Agus <harry_agus@...>
Date: Thu Apr 14, 2005 7:15 am
Subject: Folic Acid (Asam Folat) harry_agus
Offline
Send Email

First of all, let me introduce my self. I'm Harry
Samputra Agus. An Indonesian Lawyer and a lecturer in
University of Indonesia is my occupation. This is my
first letter to you all. Before, My wife Amalia
actives in this group. My first doughter, Cahaya
(Enlightment) die because of this dillematic illness
and sickness.
Dillematic because it seperated to 2 situation. What
we can do or controlled and what we cannot do or even
imagined. My second son Hakim Cendekia (Knowledgable
Judge) is under our controlled. He is 100% healthy.
Heredity is not our controlled background. But folic
acid is. What in our control is "the paradigm of
causes"
--- jo falor <poohqabear@...> wrote:
> The Specialist who I go to told me that it doubbled
> cause it was on mu side and my husbands side..
>
> Joann,
>
>  Marie and I were wondering who told you that the
> fact that your husband's cousin's baby had an NTD
> that it doubled your chances?? We were curious was
> it a doctor or a genetics person??
>
>
> Thanks,
>
> Kimberly and Marie
>
>
> --- In anencephaly@yahoogroups.com, "Marian"
> <lambsie2003@y...> wrote:
> > From what I know, I have a son with a mild
> cephalic disorder and for
> two years I have educated my self in college and in
> hospitals to learn
> more.  I trust the NINDS website.  It is the
> national institute for
> neurological disorders.  They say that 70% of NTD
> can be prevented
> with folic acid taken six weeks before pregnancy and
> during
> pregnancy.  That is a huge margin.  From what I know
> alot of it has to
> do with folic acid and malabsorbtion.  I have sought
> the help of a
> genetic doctor a couple of hours from where I live.
> They are going to
> run DNA and metabolic testing on my living son and
> see what they can
> find out.  I am very interested in knowing.
> Melissa
> >
> > Hi, I had a daughter stillborn in 1972 due to
> anencephaly. I did not
> > know the cause of her death until recently. At the
> time I was told
> > that the baby didn't develope properly and that I
> had carried too
> > much fluid. I was huge. Melanie weighed 2lb 2oz.
> at 36 weeks. At a
> > recent visit to my G.P. I asked the exact cause
> and was told it was
> > anencephaly. Now my concern is, my son, (I have
> two sons), and his
> > wife is expecting their first child, our first
> grandchild, and I am
> > worried in case there is a chance of NTD (neural
> tube defect) being
> > hereditary. My husband's brother when he was born
> had what they
> > called a tail at the base of his spine, what is
> in fact is colosed
> > spina bifida. He is a healthy man, had no problems
> during his life
> > because of this, and is the father of four healthy
> daughters.
> > Are there older mothers who had a anencephaly baby
> and have gone on
> > to have healthy children and are now proud
> grandparents? I would
> > love to hear from anyone who could put my mind at
> ease.
>
>
>
>
>
>
>
>
>
> ---------------------------------
> Do you Yahoo!?
> Yahoo! Small Business - Try our new resources site!
>
> ---------------------------------
> Do you Yahoo!?
> Yahoo! Small Business - Try our new resources site!
>
> ---------------------------------
> Yahoo! Groups Links
>
>    To visit your group on the web, go to:
> http://groups.yahoo.com/group/anencephaly/
>
>    To unsubscribe from this group, send an email to:
> anencephaly-unsubscribe@yahoogroups.com
>
>    Your use of Yahoo! Groups is subject to the
> Yahoo! Terms of Service.
>
>
>
>
> ---------------------------------
> Do you Yahoo!?
>  Yahoo! Small Business - Try our new resources site!



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Reply | Forward | Messages in this Topic (4)

#1533 From: jo falor <poohqabear@...>
Date: Thu Apr 14, 2005 12:54 am
Subject: Re: Re: Hereditary poohqabear
Offline
Send Email

The Specialist who I go to told me that it doubbled cause it was on mu side and my husbands side..

Joann,

Marie and I were wondering who told you that the fact that your husband's cousin's baby had an NTD that it doubled your chances?? We were curious was it a doctor or a genetics person??

Thanks,

Kimberly and Marie

--- In anencephaly@yahoogroups.com, "Marian" <lambsie2003@y...> wrote: > From what I know, I have a son with a mild cephalic disorder and for two years I have educated my self in college and in hospitals to learn more. I trust the NINDS website. It is the national institute for neurological disorders. They say that 70% of NTD can be prevented with folic acid taken six weeks before pregnancy and during pregnancy. That is a huge margin. From what I know alot of it has to do with folic acid and malabsorbtion. I have sought the help of a genetic doctor a couple of hours from where I live. They are going to run DNA and metabolic testing on my living son and see what they can find out. I am very interested in knowing. Melissa > > Hi, I had a daughter stillborn in 1972 due to anencephaly. I did not > know the cause of her death until recently. At the time I was told > that the baby didn't develope properly and that I had carried too > much fluid. I was huge. Melanie weighed 2lb 2oz. at 36 weeks. At a > recent visit to my G.P. I asked the exact cause and was told it was > anencephaly. Now my concern is, my son, (I have two sons), and his > wife is expecting their first child, our first grandchild, and I am > worried in case there is a chance of NTD (neural tube defect) being > hereditary. My husband's brother when he was born had what they > called a tail at the base of his spine, what is in fact is colosed > spina bifida. He is a healthy man, had no problems during his life > because of this, and is the father of four healthy daughters. > Are there older mothers who had a anencephaly baby and have gone on > to have healthy children and are now proud grandparents? I would > love to hear from anyone who could put my mind at ease.

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#1532 From: Lee Torbeck <threegr8kdz@...>
Date: Wed Apr 13, 2005 1:25 am
Subject: Re: Re: Hereditary angellynnesm...
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I know this question was not directed at me, but I didn't need anyone to tell me my chances were better than average. AFTER my angel was born, when word got out to my extended family, I found out that my mother's sister's first baby was born anencephalic, as was also, my dad's sister's first baby. So, at least in my family, I do think it was genetic. When my angel was born, they were just starting to find out what caused it. If she was born now, I have no doubt she would be born healthy. They have made so many advances in that last 19 years. I would suggest just letting your doctor know you have it in your family, and he will do what needs to be do.

My angel is 19yo today! I watch her 18yo sister to imagine what she would look like...someday I will see her again.

kim flathers <sgttibbs96@...> wrote:

Joann,

Marie and I were wondering who told you that the fact that your husband's cousin's baby had an NTD that it doubled your chances?? We were curious was it a doctor or a genetics person??

Thanks,

Kimberly and Marie

jo falor <poohqabear@...> wrote:

Hello my name is joann and i am sorry to say yes it can run in the family my mom had a baby in 1981 he was stillbirth cause of water on the brain and she too was huge but my husbands cousin had a baby with NTD so that doubled my chance i didnt know that but i did have a normal baby with my first preg.. with my first husband my first child with my hubby now was anencephaly baby but i didnt take any folic acid the specialist told me to take folic acid at least 6 months before trying the longer you take folic acid will be better. so it really depends on the families... love always joann falor My mom is a pround grandma of 5 grandchildren... I am the only one who had a anencephaly baby but my mom is still pround of her Danielle ..

myltlelily <myltlelily@...> wrote:
--- In anencephaly@yahoogroups.com, "Marian" <lambsie2003@y...> wrote: > From what I know, I have a son with a mild cephalic disorder and for two years I have educated my self in college and in hospitals to learn more. I trust the NINDS website. It is the national institute for neurological disorders. They say that 70% of NTD can be prevented with folic acid taken six weeks before pregnancy and during pregnancy. That is a huge margin. From what I know alot of it has to do with folic acid and malabsorbtion. I have sought the help of a genetic doctor a couple of hours from where I live. They are going to run DNA and metabolic testing on my living son and see what they can find out. I am very interested in knowing. Melissa > > Hi, I had a daughter stillborn in 1972 due to anencephaly. I did not > know the cause of her death until recently. At the time I was told > that the baby didn't develope properly and that I had carried too > much fluid. I was huge. Melanie weighed 2lb 2oz. at 36 weeks. At a > recent visit to my G.P. I asked the exact cause and was told it was > anencephaly. Now my concern is, my son, (I have two sons), and his > wife is expecting their first child, our first grandchild, and I am > worried in case there is a chance of NTD (neural tube defect) being > hereditary. My husband's brother when he was born had what they > called a tail at the base of his spine, what is in fact is colosed > spina bifida. He is a healthy man, had no problems during his life > because of this, and is the father of four healthy daughters. > Are there older mothers who had a anencephaly baby and have gone on > to have healthy children and are now proud grandparents? I would > love to hear from anyone who could put my mind at ease.

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#1531 From: kim flathers <sgttibbs96@...>
Date: Wed Apr 13, 2005 12:44 am
Subject: Re: Re: Hereditary sgttibbs96
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Joann,

Marie and I were wondering who told you that the fact that your husband's cousin's baby had an NTD that it doubled your chances?? We were curious was it a doctor or a genetics person??

Thanks,

Kimberly and Marie

jo falor <poohqabear@...> wrote:

Hello my name is joann and i am sorry to say yes it can run in the family my mom had a baby in 1981 he was stillbirth cause of water on the brain and she too was huge but my husbands cousin had a baby with NTD so that doubled my chance i didnt know that but i did have a normal baby with my first preg.. with my first husband my first child with my hubby now was anencephaly baby but i didnt take any folic acid the specialist told me to take folic acid at least 6 months before trying the longer you take folic acid will be better. so it really depends on the families... love always joann falor My mom is a pround grandma of 5 grandchildren... I am the only one who had a anencephaly baby but my mom is still pround of her Danielle ..

myltlelily <myltlelily@...> wrote:
--- In anencephaly@yahoogroups.com, "Marian" <lambsie2003@y...> wrote: > From what I know, I have a son with a mild cephalic disorder and for two years I have educated my self in college and in hospitals to learn more. I trust the NINDS website. It is the national institute for neurological disorders. They say that 70% of NTD can be prevented with folic acid taken six weeks before pregnancy and during pregnancy. That is a huge margin. From what I know alot of it has to do with folic acid and malabsorbtion. I have sought the help of a genetic doctor a couple of hours from where I live. They are going to run DNA and metabolic testing on my living son and see what they can find out. I am very interested in knowing. Melissa > > Hi, I had a daughter stillborn in 1972 due to anencephaly. I did not > know the cause of her death until recently. At the time I was told > that the baby didn't develope properly and that I had carried too > much fluid. I was huge. Melanie weighed 2lb 2oz. at 36 weeks. At a > recent visit to my G.P. I asked the exact cause and was told it was > anencephaly. Now my concern is, my son, (I have two sons), and his > wife is expecting their first child, our first grandchild, and I am > worried in case there is a chance of NTD (neural tube defect) being > hereditary. My husband's brother when he was born had what they > called a tail at the base of his spine, what is in fact is colosed > spina bifida. He is a healthy man, had no problems during his life > because of this, and is the father of four healthy daughters. > Are there older mothers who had a anencephaly baby and have gone on > to have healthy children and are now proud grandparents? I would > love to hear from anyone who could put my mind at ease.

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#1530 From: David and Sabrina Tyndall <tyndall@...>
Date: Sat Apr 9, 2005 6:30 pm
Subject: Anencephaly oursarahbear
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Hi -

Given the discussions and questioned posed recently, I thought I would
pass along these web pages, which seem to have accurate and helpful
information.

http://www.chw.org/display/PPF/DocID/5833/router.asp

http://www.chg.duke.edu/patients/neural.html

I think it's important to note that there is still no absolute certainty
as to what causes anencephaly in the medical community, even though
there appears to be some possible evidence of genetic links in a few
studies (e.g., why they state a combination of genes and environmental
factors).  The Duke University web site has a section titled "The
Genetics of NTDs" which addresses the increased risk for children whose
mothers had a baby with a neural tube defect (the risk increases from
0.1% to 2-5% - still a small risk, relatively speaking).

Sabrina
Mommy to Matthew, Sarah in heaven, and Emma


Brain Tumors	�

Anencephaly	�

Chiari Malformation	�

Craniosynostosis	�

Hydrocephalus	�

Microcephaly	�

Spina Bifida	�

Brain Abscess	�

Encephalitis	�

Guillain-Barre Syndrome	�

Meningitis	�

Reye Syndrome	�

Head Injury	�

Acute Spinal Cord Injury	�

Brachial Plexus Injury	�

: : : : : : Anencephaly

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	Anencephaly
	What is anencephaly?
	Anencephaly is a condition present at birth that affects the formation of the brain and the skull bones that surround the head. Anencephaly results in only minimal development of the brain. Often, the brain lacks part or all of the cerebrum (the area of the brain that is responsible for thinking, vision, hearing, touch, and movement). There is no bony covering over the back of the head and there may also be missing bones around the front and sides of the head.
	What causes anencephaly?
	Anencephaly is a type of neural tube defect. Neural tube defects, spina bifida (open spine) and anencephaly (open skull) are seen in one to two per 1,000 live births. During pregnancy, the human brain and spine begin as a flat plate of cells, which rolls into a tube, called the neural tube. If all or part of the neural tube fails to close, leaving an opening, this is known as an open neural tube defect, or ONTD. This opening may be left exposed (80 percent of the time), or covered with bone or skin (20 percent of the time). Anencephaly and spina bifida are the most common ONTDs, while encephaloceles (where there is a protrusion of the brain or its coverings through the skull) are much rarer. Anencephaly occurs when the neural tube fails to close at the base of the skull, while spina bifida occurs when the neural tube fails to close somewhere along the spine. ONTDs happen to couples without a prior family history of these defects in over 90 percent of the cases. ONTDs result from a combination of genes inherited from both parents, coupled with environmental factors. For this reason, ONTDs are considered multifactorial traits, meaning "many factors," both genetic and environmental, contribute to their occurrence. Some of the environmental factors include uncontrolled diabetes in the mother, and certain medications that are available by prescription only. According to the Centers for Disease Control and Prevention (CDC), the occurrence rate of ONTDs can vary from state to state and from country to country. The rate of ONTD occurrence in Arkansas is 7.8 out of 10,000 births and 30 out of 10,000 births in Washington. The country with the highest number of documented cases is Ireland, where spina bifida occurs in approximately 4.2 out of 1,000 live births. The environmental factors causing these differences are not well understood. ONTDs are seen five times more often in females than males. Once a child has been born with an ONTD in the family, the chance for an ONTD to happen again is increased to 3 to 5 percent. It is important to understand that the type of neural tube defect can differ the second time. For example, one child could be born with anencephaly, while the second child could have spina bifida.
	What are the symptoms of anencephaly?
	The following are the most common symptoms of anencephaly. However, each child may experience symptoms differently. Symptoms may include:
	Absence of bony covering over the back of the head. Missing bones around the front and sides of the head. Folding of the ear. Cleft palate - a condition in which the roof of the child's mouth does not completely close, leaving an opening that can extend into the nasal cavity. Congenital heart defects. Some basic reflexes, but without the cerebrum, there can be no consciousness and the baby cannot survive.
	The symptoms of anencephaly may resemble other problems or medical conditions. Always consult your child's physician for a diagnosis.
	How is anencephaly diagnosed?
	The diagnosis of anencephaly may be made during pregnancy, or at birth by physical examination. The baby's head often appears flattened due to the abnormal brain development and missing bones of the skull. Diagnostic tests performed during pregnancy to evaluate the baby for anencephaly include the following:
	Alpha-fetoprotein - a protein produced by the fetus that is excreted into the amniotic fluid. Abnormal levels of alpha-fetoprotein may indicate brain or spinal cord defects, multiple fetuses, a miscalculated due date, or chromosomal disorders. Amniocentesis - a test performed to determine chromosomal and genetic disorders and certain birth defects. The test involves inserting a needle through the abdominal and uterine wall into the amniotic sac to retrieve a sample of amniotic fluid. Ultrasound (Also called sonography.) - a diagnostic imaging technique that uses high-frequency sound waves and a computer to create images of blood vessels, tissues, and organs. Ultrasounds are used to view internal organs as they function, and to assess blood flow through various vessels. Blood tests
	Treatment of the newborn with anencephaly:
	There is no medical treatment for anencephaly. Due to the lack of development of the brain, approximately 75 percent of infants are stillborn and the remaining 25 percent of babies die within a few hours, days, or weeks after delivery. Care will be aimed at providing emotional support to the family. Experiencing the loss of a child can be very traumatic. Grief counseling services are available to help you cope with the loss of your child.
	Future pregnancies:
	Genetic counseling may be recommended by the physician to discuss the risk of recurrence in a future pregnancy as well as vitamin therapy (a prescription for folic acid) that can decrease the recurrence for ONTDs. Extra folic acid, a B vitamin, if taken one to two months prior to conception and throughout the first trimester of pregnancy, has been found to decrease the reoccurrence of ONTDs, for couples who have had a previous child with an ONTD. You cannot obtain the proper amount of folic acid in a multivitamin. A prescription from an obstetrician or other healthcare provider (prior to pregnancy) is needed in order to have the proper dosage.
	Click here to view the Online Resources page of this Web. Return to the Neurological Disorders Home Page Return to the Pediatric Health Information Home Page

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#1529 From: Sheri Gathright <angelmomlovesangel@...>
Date: Sat Apr 9, 2005 7:35 am
Subject: Re: My baby is said to have anencephaly. angelmomlove...
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Michelle,

I lost my baby Angel just over six years ago. I twas VERY hard on me to see her like that. I guess I must have taken it harder then some. I still mourn her loss. Michelle, you need to do what is right for you. I was blessed and that my baby lived for 10 hours and 7 minutes. I had her at 20 weeks. I would have gone to full term if my body would have let me. I am so sorry for you have to go through this kind of pain. My thoughts are with you.

Angel's mommy

BabyFaith kendall <babyfaithkendall@...> wrote:

Michelle i emailed you on your yahoo acc....if you click on pictures on the anencephaly site baby faith is there and i'm telling ya don't listin to alot of people they make it out worse then it really is hun just watch what pic you look at there is a folder with a baby that was 16weeks i think please don't look at it...they shouldn't have even posted it..faith looks normal being she was 32 weeks she has a hat on and her face was purple but other then that she was fine. crystal baby faith's mommy --- Michelle <mimib17@...> wrote: --------------------------------- Hello everyone my name is Michelle. About a month ago i had an ultrasound done at about 12 weeks into my pregnancy. The next day me, my mother, and the baby's father got called into my doctor's office and she told us that she was more than sure that my child had exencephaly which as you know comes to be anencephaly. I had to make a decision on what i wanted to do about this. We went to get a second opinion and the doctor told us the same thing. The decision I made after doing nothing but thinking about everything was to terminate the pregnancy. I really didnt know what to do because me and the baby's father are not together any more and i was alone basically in making this decision because i barely got to talk to him about anything. I went to the hospital on Thursday and they induced by labor in order for me to just have the baby now. (I am 16 weeks.) By Friday I had not dialated at all so they sent me home and said to come back Sunday and they would try again. Well after hours of crying and considering every other option I realized i wanted to wait my until full term and just have the baby so if i could spend any time with my child at all i would. I finally talked to the baby's father and he wants to do the same thing. The only problem is that i never get a chance to talk to him any more and i have noone else that is there for me to talk to because a lot of people do not understand why i want to do this. If there is anyone out there who would like to just help me get through this i would really appreciate someone to talk to about this. My screen name on yahoo is mimib17 and my screen name on aol istant messenger is justalil2crazy or lovemimi1717. Or you can email me at mimib17@... Thanks, **~Michelle~** --------------------------------- Yahoo! Groups Links To visit your group on the web, go to: http://groups.yahoo.com/group/anencephaly/ To unsubscribe from this group, send an email to: anencephaly-unsubscribe@yahoogroups.com Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. ______________________________________________________________________ Post your free ad now! http://personals.yahoo.ca

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#1528 From: jo falor <poohqabear@...>
Date: Sat Apr 9, 2005 2:15 am
Subject: Re: Re: Hereditary poohqabear
Offline
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Hello my name is joann and i am sorry to say yes it can run in the family my mom had a baby in 1981 he was stillbirth cause of water on the brain and she too was huge but my husbands cousin had a baby with NTD so that doubled my chance i didnt know that but i did have a normal baby with my first preg.. with my first husband my first child with my hubby now was anencephaly baby but i didnt take any folic acid the specialist told me to take folic acid at least 6 months before trying the longer you take folic acid will be better. so it really depends on the families... love always joann falor My mom is a pround grandma of 5 grandchildren... I am the only one who had a anencephaly baby but my mom is still pround of her Danielle ..

myltlelily <myltlelily@...> wrote:

--- In anencephaly@yahoogroups.com, "Marian" <lambsie2003@y...> wrote: > From what I know, I have a son with a mild cephalic disorder and for two years I have educated my self in college and in hospitals to learn more. I trust the NINDS website. It is the national institute for neurological disorders. They say that 70% of NTD can be prevented with folic acid taken six weeks before pregnancy and during pregnancy. That is a huge margin. From what I know alot of it has to do with folic acid and malabsorbtion. I have sought the help of a genetic doctor a couple of hours from where I live. They are going to run DNA and metabolic testing on my living son and see what they can find out. I am very interested in knowing. Melissa > > Hi, I had a daughter stillborn in 1972 due to anencephaly. I did not > know the cause of her death until recently. At the time I was told > that the baby didn't develope properly and that I had carried too > much fluid. I was huge. Melanie weighed 2lb 2oz. at 36 weeks. At a > recent visit to my G.P. I asked the exact cause and was told it was > anencephaly. Now my concern is, my son, (I have two sons), and his > wife is expecting their first child, our first grandchild, and I am > worried in case there is a chance of NTD (neural tube defect) being > hereditary. My husband's brother when he was born had what they > called a tail at the base of his spine, what is in fact is colosed > spina bifida. He is a healthy man, had no problems during his life > because of this, and is the father of four healthy daughters. > Are there older mothers who had a anencephaly baby and have gone on > to have healthy children and are now proud grandparents? I would > love to hear from anyone who could put my mind at ease.

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#1527 From: jo falor <poohqabear@...>
Date: Sat Apr 9, 2005 2:07 am
Subject: Re: my daughter lily poohqabear
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Hi I dont think you should give up on having any more children I have A 4 year old with alot of problems but there is medication for her then I have my anencephaly baby name Danielle who would be 3 andI have Madison who will be two and i am preg. with a baby who is due june 5th but i am having alot of complications they told me dont have any more children but I didnt listen i have my wonderful Madi and Skylar and soon to be Hallie jo before you try to have any more have your doctor prescribe folic acid 4mg or more a day it is a miracle drug i have went through miscarriages and everything else... just believe that god has a plan for you..... Love always Joann Falor

Evonne <Evonne2004@...> wrote:

hiya melissa

im sorry to hear about you loss'. i lost my daughter in 2002 due to anencephaly,

i also have a daughter whos 4 and a son whos just gone 1.

i just wanted to say to you, please dont ever give up hope, you have been thru so much, just give yourself time to grieve.

please take care and mail me if you would like to talk

evonne

xxx

-------Original Message-------

From: myltlelily

Date: 04/08/05 15:19:21

To: anencephaly@yahoogroups.com

Subject: [anencephaly] my daughter lily

My name is Melissa.  On March 21, 2005 my water broke and I

delivered a child with anencephaly.  I have had the hardest time

dealing with this because I have a son with a cephalic disorder.  I

am only 23 years old and I didn't want to give up having children,

but after researching neural tube disorders I am terrified.  I was

told at the hospital that I had a little boy and for almost two

weeks I mourned what a little boy would have brought to my life.

Just recently I was told that they did a path report stating that

internal organs were female.  I have had to mourn twice because of

that mistake.  Maybe that's why I'm having such trouble dealing with

this.  I had to reprocess all of the paperwork with the funeral

home, cemetary, city coroner, and personal records.  I am interested

in knowing if this has ever happened to anyone else.  I lost a twin

with my daughter, my son has physical disorders (plural) I lost a

pregnancy after that, and then a child with anencephaly.  I almost

feel that it would be selfish to ever try again.  Why put another

human life through that in order to serve my need to have another

child?  I don't know what to think.

Anyone can write me at myltlelily@....

thanks for listening

melissa

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<*> To visit your group on the web, go to:

    http://groups.yahoo.com/group/anencephaly/

<*> To unsubscribe from this group, send an email to:

    anencephaly-unsubscribe@yahoogroups.com

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#1526 From: "Evonne" <Evonne2004@...>
Date: Fri Apr 8, 2005 2:29 pm
Subject: Re: my daughter lily angel_eyes_uk0
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hiya melissa

im sorry to hear about you loss'. i lost my daughter in 2002 due to anencephaly,

i also have a daughter whos 4 and a son whos just gone 1.

i just wanted to say to you, please dont ever give up hope, you have been thru so much, just give yourself time to grieve.

please take care and mail me if you would like to talk

evonne

xxx

-------Original Message-------

From: myltlelily

Date: 04/08/05 15:19:21

To: anencephaly@yahoogroups.com

Subject: [anencephaly] my daughter lily

My name is Melissa. On March 21, 2005 my water broke and I

delivered a child with anencephaly. I have had the hardest time

dealing with this because I have a son with a cephalic disorder. I

am only 23 years old and I didn't want to give up having children,

but after researching neural tube disorders I am terrified. I was

told at the hospital that I had a little boy and for almost two

weeks I mourned what a little boy would have brought to my life.

Just recently I was told that they did a path report stating that

internal organs were female. I have had to mourn twice because of

that mistake. Maybe that's why I'm having such trouble dealing with

this. I had to reprocess all of the paperwork with the funeral

home, cemetary, city coroner, and personal records. I am interested

in knowing if this has ever happened to anyone else. I lost a twin

with my daughter, my son has physical disorders (plural) I lost a

pregnancy after that, and then a child with anencephaly. I almost

feel that it would be selfish to ever try again. Why put another

human life through that in order to serve my need to have another

child? I don't know what to think.

Anyone can write me at myltlelily@....

thanks for listening

melissa

------------------------ Yahoo! Groups Sponsor --------------------~-->

Dying to be thin?

Anorexia. Narrated by Julianne Moore .

http://us.click.yahoo.com/7visLB/gsnJAA/xGEGAA/VzSolB/TM

--------------------------------------------------------------------~->

Yahoo! Groups Links

<*> To visit your group on the web, go to:

http://groups.yahoo.com/group/anencephaly/

<*> To unsubscribe from this group, send an email to:

anencephaly-unsubscribe@yahoogroups.com

<*> Your use of Yahoo! Groups is subject to:

http://docs.yahoo.com/info/terms/

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#1525 From: "myltlelily" <myltlelily@...>
Date: Fri Apr 8, 2005 2:37 am
Subject: Re: Hereditary myltlelily
Offline
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--- In anencephaly@yahoogroups.com, "Marian" <lambsie2003@y...> wrote:
> From what I know, I have a son with a mild cephalic disorder and for
two years I have educated my self in college and in hospitals to learn
more.  I trust the NINDS website.  It is the national institute for
neurological disorders.  They say that 70% of NTD can be prevented
with folic acid taken six weeks before pregnancy and during
pregnancy.  That is a huge margin.  From what I know alot of it has to
do with folic acid and malabsorbtion.  I have sought the help of a
genetic doctor a couple of hours from where I live.  They are going to
run DNA and metabolic testing on my living son and see what they can
find out.  I am very interested in knowing.
Melissa
>
> Hi, I had a daughter stillborn in 1972 due to anencephaly. I did not
> know the cause of her death until recently. At the time I was told
> that the baby didn't develope properly and that I had carried too
> much fluid. I was huge. Melanie weighed 2lb 2oz. at 36 weeks. At a
> recent visit to my G.P. I asked the exact cause and was told it was
> anencephaly. Now my concern is, my son, (I have two sons), and his
> wife is expecting their first child, our first grandchild, and I am
> worried in case there is a chance of NTD (neural tube defect) being
> hereditary. My husband's brother when he was born had what they
> called a tail at the base of his spine, what is  in fact is colosed
> spina bifida. He is a healthy man, had no problems during his life
> because of this, and is the father of four healthy daughters.
> Are there older mothers who had a anencephaly baby and have gone on
> to have healthy children and are now proud grandparents? I would
> love to hear from anyone who could put my mind at ease.

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#1524 From: "myltlelily" <myltlelily@...>
Date: Fri Apr 8, 2005 2:09 am
Subject: my daughter lily myltlelily
Offline
Send Email

My name is Melissa.  On March 21, 2005 my water broke and I
delivered a child with anencephaly.  I have had the hardest time
dealing with this because I have a son with a cephalic disorder.  I
am only 23 years old and I didn't want to give up having children,
but after researching neural tube disorders I am terrified.  I was
told at the hospital that I had a little boy and for almost two
weeks I mourned what a little boy would have brought to my life.
Just recently I was told that they did a path report stating that
internal organs were female.  I have had to mourn twice because of
that mistake.  Maybe that's why I'm having such trouble dealing with
this.  I had to reprocess all of the paperwork with the funeral
home, cemetary, city coroner, and personal records.  I am interested
in knowing if this has ever happened to anyone else.  I lost a twin
with my daughter, my son has physical disorders (plural) I lost a
pregnancy after that, and then a child with anencephaly.  I almost
feel that it would be selfish to ever try again.  Why put another
human life through that in order to serve my need to have another
child?  I don't know what to think.
Anyone can write me at myltlelily@....

thanks for listening
melissa

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#1523 From: BabyFaith kendall <babyfaithkendall@...>
Date: Thu Apr 7, 2005 4:44 pm
Subject: Re: My baby is said to have anencephaly. babyfaithken...
Offline
Send Email

Michelle i emailed you on your yahoo acc....if you
click on pictures on the anencephaly site baby faith
is there and i'm telling ya don't listin to alot of
people they make it out worse then it really is hun
just watch what pic you look at there is a folder with
a baby that was 16weeks i think please don't look at
it...they shouldn't have even posted it..faith looks
normal being she was 32 weeks she has a hat on and her
face was purple but other then that she was fine.

crystal baby faith's mommy
--- Michelle <mimib17@...> wrote:
---------------------------------


Hello everyone my name is Michelle. About a month ago
i had an
ultrasound done at about 12 weeks into my pregnancy.
The next day
me, my mother, and the baby's father got called into
my doctor's
office and she told us that she was more than sure
that my child had
exencephaly which as you know comes to be anencephaly.
I had to make
a decision on what i wanted to do about this. We went
to get a
second opinion and the doctor told us the same thing.
The decision I
made after doing nothing but thinking about everything
was to
terminate the pregnancy. I really didnt know what to
do because me
and the baby's father are not together any more and i
was alone
basically in making this decision because i barely got
to talk to
him about anything. I went to the hospital on Thursday
and they
induced by labor in order for me to just have the baby
now. (I am 16
weeks.) By Friday I had not dialated at all so they
sent me home and
said to come back Sunday and they would try again.
Well after hours
of crying and considering every other option I
realized i wanted to
wait my until full term and just have the baby so if i
could spend
any time with my child at all i would. I finally
talked to the
baby's father and he wants to do the same thing. The
only problem is
that i never get a chance to talk to him any more and
i have noone
else that is there for me to talk to because a lot of
people do not
understand why i want to do this. If there is anyone
out there who
would like to just help me get through this i would
really
appreciate someone to talk to about this. My screen
name on yahoo is
mimib17 and my screen name on aol istant messenger is
justalil2crazy
or lovemimi1717. Or you can email me at
mimib17@...
Thanks,
     **~Michelle~**








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