--- In anencephaly@egroups.com, cdickey@h... wrote:
> I don't know what to say to people when they ask if we are having
> another baby.  There are so few people who knew that I was pregnant
> last time anyway, I usually just laugh it off and say that this one
> is enough for now.

Not that I an an expert or anything, but, if I may offer you an
opinion, who you tell and how much you tell is entirely your comfort
level. People who don't know of the situation are not asking about
the child you lost, so you have the freedom to talk about future
babies if you wish. Of course, how many children you decide to have
is your business, and some people don't need to know that if you
don't feel comfortable telling them. You are not obligated.

If you feel you trust someone enough and wish to say something, I
believe you should do what ever you are comfortable with.

> And then there are the people that we did tell
> that we were expecting that I haven't told yet that we are not.  Do
> you just tell them that you had a miscarrige or tell tham the whole
> story?

Martha and I are going through a similar situation except we both
want to go through with the pregnancy. It is simply what we feel
would be right for us. Martha and I are certainly believe is the
value of life before birth and certainly that guided our decision.

That being said, we would not condemn anyone who decided to terminate
a pregnancy in this situation. If this is what you chose, I am sure
it was a heart-wrenching decision, especially if this pregnancy was
welcome news. I personally live by a philosophy that, if I tell
someone about the pregnancy, I need to be ready to tell more later.
Again, I stress this is my own opinion, and you have a different one,
you need to do what you need to do. You are going through more pain
than any of these others. Protect yourself, and put your trust in
those who will support you.

I hope I am not coming across as lecturing here, I am not intending
to. I hope that offering another person's perspective might be of
value to someone.

Best wishes.

Hi all,

I joined this group because Martha and I got the bad news just over
two weeks ago. I sympathize greatly with those who don't have the
kind of support base that Martha and I have. I can't imagine going
through this alone.

I have a question. Does anyone have any ideas of how to deal with
older siblings? Our son, Andrew, who is almost four and our only
other child, is someone we involved from the start. He has always
been
a very nuturing little fellow and always wants to stop and smile and
coo at babies. If we have friends over who have younger children (all
the way down to new born) Andrew is very loving and gentle with them.
He has always been this way and often used to ask if he had a brother
or sister.

So when we found out we were pregnant, we had him involved in the
whole thing and even had him tell some of our far away relatives that
"Mommy has a baby in her tummy". We bought him some books as well,
including one called "I am going to be a big brother".

So after four mionths of us all being excited about the impending
arrival, we go the bad news that our baby has the condition called
"anencephaly". And learning this condition is fatal, we had days of
tears and deep sadness.

Andrew became worried and asked us what was wrong. What could we tell
him? We basically told him the baby was very sick. With all the
sorting out of things for the next few days and dealing with our
grief, Andrew showed what we believe are signs of his stress. He
suddenly began filling in pants again, and kept wanting a soother as
well.

We still have not told him yet, but we know we must and our planning
to consult with a child psychologist about this. We want to tell him
the truth and also help him to deal with it in a way that he will
continue to be the fun, happy, healthy and caring child he is.

In the end, we believe that he will be fine, but we just want to take
the right path to get there. Martha wants to go through with the
pregnancy and I am fully supportive of that, but we realize that this
make for tougher times ahead.

Has anyone else been in this situation? I'd certainly be interested
on any comments in this area.

Keith

Keith,
I lost a baby girl to this condition in 1974.  The experience changed my life
forever.  In 1974, there was no ultra sound in my area.  At 9 months, I was
xrayed because the doctor thought I might be having twins because I was so
big.  What a shock to find out that my baby had no skull!  She was delivered
by c section and lived a few minutes.  I had a 3 year old daughter at the
time who was really anxious for the new baby to arrive.  We just told her
that the baby went to Heaven to live, and we did not elaborate.  As my
daughter got older and was able to understand, we explained more details.  I
think the less you say to a four year old, the better he will adjust to the
situation.  Children handle these things a lot better than we do.  Best
wishes to you.
Sharon

>Hi all,
>
>I joined this group because Martha and I got the bad news just over
>two weeks ago.

Dear Keith: I'm sorry to hear about your baby's diagnosis.

>I have a question. Does anyone have any ideas of how to deal with
>older siblings? Our son, Andrew, who is almost four and our only
>other child, is someone we involved from the start. [...]
>Andrew became worried and asked us what was wrong. What could we tell
>him? We basically told him the baby was very sick. With all the
>sorting out of things for the next few days and dealing with our
>grief, Andrew showed what we believe are signs of his stress. He
>suddenly began filling in pants again, and kept wanting a soother as
>well.
>
>We still have not told him yet, but we know we must and are planning
>to consult with a child psychologist about this.

I don't think it's necessary to wait until you talk to a child
psychologist, since as you say, your son is sensitive and used to
being involved and clearly understands something is wrong.

We lost our daughter to anencephaly on July 20th after two precious
hours, three days after our son turned three years old. While a four
year old will have a better grip on death and what it means than a
two and a half year old, I think it's close enough for government
work. :-)  [I can say that--I've worked for the government!] At least
until you can speak to a professional, that is.  Like you, we decided
to carry Emily to term.

We told our son in the doctor's waiting room, after the ultrasound
and before the first consultation, that the new baby was sick. We
made sure to tell him that we were happy because we had him, but sad
because the new baby was sick. This worked for him. After our son had
that much down, we told him that the new baby had a broken head. We
let this sink in for a while. I got a few books out of the library
that deal with death in a general and nonthreatening way. The best
was "Nanna Upstairs, Nanna Downstairs" by Tomie DePaola.

In the meantime, our son went to all the prenatal appointments with
me, visited cemeteries, went with me to interview a funeral home (he
said, "F-U-N...that spells fun!" I said "Honey, you need to read the
rest of the word too...") and came to a couple of gravestone
showrooms ("Momma, this is a cemetery store!")  We included him in
hearing Emily's heartbeat, encouraged him to use her name, and let
him ask whatever questions he wanted.

Because we had four and a half months to prepare him, we didn't rush
anything. He asked questions at his own pace, and we followed his
lead. He became very interested in other babies and wanted to know if
they had broken heads too. He was relieved that most babies have
"fine heads". When he was ready to see a picture of an anencephalic
baby, he asked, and I took him to www.asfhelp.com and showed him some
of the pictures.

When Emily was born, we asked him if he wanted to hold her, and he
did. He was thrilled to hold her, and he had a huge smile on the
entire time. He still talks about holding her every day.  When she
died, we told him to say goodbye to her and explained that the new
baby had died. He said goodbye, and after that we didn't let him see
her again (like when we went to the funeral home to get her dressed
for the casket.)  We had a babysitter come with us to the church for
his funeral so that if he felt he couldn't handle it, he could leave.
He was fine through the church service, but went to run around with
the sitter at the graveside. Since then, he has expressed interest in
heading to the cemetery with us several times. Like your son, ours
has had problems with toileting since Emily's death, but it's been
short-lived and we're letting him use a diaper when he asks for one.

We've made sure to explain in the most frank and undecorated language
we can. We've made sure to say that Emily's spirit "went to God"
rather than that God "took" her so that he won't live in fear. We've
reassured him that he was born with a fine head and will not die.
We've had to tell him repeatedly that both of us have fine heads too.
He said once that Emily was sick because he was still nursing, and we
instantly reassured him that she was not sick because of him. We told
him that although we had to put Emily's body in the ground, that her
spirit is the part that makes her special and it isn't there any
longer.

When I spoke to hospice about how to handle my son, they advised
preparing him as much as possible ahead of time for what would happen
to *me,* since at this age kids tend to be a bit more selfish than
they will be when they're older. Your son will probably be concerned
that something will happen to one of you, so it'd be good for him if
you can take him on a tour of the maternity section of the hospital
before the birth. Let him see the rooms, let him see that there's a
television (important for many kids!!) and a rocking chair or a bed
that goes up and down... We also brought our son to the hospital with
us at the time and then let my mother take him back home with her,
just so he knew what the room would look like. If Martha will have an
IV when he sees her, make sure he knows ahead of time why it's there
and what it is. And so on. The fewer things he doesn't recognize, the
fewer things he'll have to worry about. Make sure a couple of weeks
beforehand that he'll know exactly who will be with him when it comes
time for the birth and where he'll stay and when he can see you again.

Our son is too young for group therapy, but the hospice coordinator
recommended art therapy, and she said children five and older can
sometimes join support groups. We've talked to his pediatrician and
the director of the preschool so both will be aware of any issues
that might arise in the future. (Actually, our pediatrician turned
out to be our best advocate early on, and she stood up for us when
the folks at the hospital said they wouldn't let Emily room-in with
us if born alive.)

I think the most important thing to our son is to know that we are
still there for him and still love him and aren't going to be
leaving. While he's showing signs of stress and does feel the loss,
he's still not devastated. His grief is episodic simply because a
toddler's life is more episodic.

I hope any of this is helpful to you.

Jane

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Jane Lebak, tabris@...

"I have found the paradox that if I love until it hurts
then there is no hurt, only love." -Mother Teresa

I have copied off the home pages of this group, the Interrupted
Pregnancy Support Group and Mourning Mommies.  I didn't know where to
get any information when I had my troubles so I am hoping that this
helps others.  I am going to give copies to all the Drs in the area
so that they can make any women who have need aware of the help
available.  I will also forward to the Genetic Counselling center in
our area in case they are not aware of new things.  Maybe some of the
Drs who receive the papers will take the time to look at the sites
and learn some things.

Cdickey:
That is a wonderful idea. I did the same and gave it to my doctor, but I
like the idea of sending the info to area drs especially the genetics drs.
That way maybe no one will feel alone and will be able to find the support
they need.

Everyone:
  I woke up this morning full of ideas. What do you all think of this idea? I
have been wanting to start a support group (hopefully within the next 2 yrs)
and thought that maybe two support groups would be a better idea. One for
carrying to term and one for interrupted pregnancy support.  Actual go to
every month, meet and hug people support groups. I have wanted to go to a
support group but ....I don't know, I think our situation is different than
those who lose their babies at birth. I mean we all feel the same grief and
our hearts all ache, but I just think we have had to face different decisons
and questions then those attending regular support groups. What do you all
think? If there was such a support group in your area....would you go? If
any of you live in Michigan, would you be interested in being a facillitator
for either group. I still have to check into classes and resources and
places to hold meetings, (that's why I said hopefully within 2 yrs though I
would like to do it sooner), but I know I wish there was such a group when I
lost Jessica.
Peace to all,
Tammy H ^i^Jessica's Mom
----- Original Message -----
From: <cdickey@...>
To: <anencephaly@egroups.com>
Sent: Tuesday, August 08, 2000 7:10 PM
Subject: [anencephaly] Doing my bit


> I have copied off the home pages of this group, the Interrupted
> Pregnancy Support Group and Mourning Mommies.  I didn't know where to
> get any information when I had my troubles so I am hoping that this
> helps others.  I am going to give copies to all the Drs in the area
> so that they can make any women who have need aware of the help
> available.  I will also forward to the Genetic Counselling center in
> our area in case they are not aware of new things.  Maybe some of the
> Drs who receive the papers will take the time to look at the sites
> and learn some things.
>
>
>
>
>
>
>

Dear Keith and Martha,

I am so sorry to hear of your diagnosis. It is devastating, to say
the least. I am so thankful you have a good support base -- it helps
beyond words. I, too, cannot imagine going through anencephaly alone.

While Ruthie, who was born May 11 this year, doesn't have any
siblings, my older sister does have two, ages 5 and 3. She has always
prided herself on telling them the truth and in mostly adult words. I
told her I didn't think that describing anencephaly was necessarily a
good thing for them at that age, but that she was the mom and I would
support her choice of information (I have wonderful nieces and
nephews). She said that she did try to tell them specifically what
anencephaly was, but that in the end, they simply couldn't fathom
what it was, so, like Anne suggested on the ASFhelp page, she told
them that Aunt Cindi's baby had a broken head. That seemed to work
for them, although they were not involved with my pregnancy nearly as
much as your son is. I'm glad to see Jane replied -- I was going to
hunt her down and ask her to talk to you if she wouldn't mind. :-)

We found out at 14 weeks, although my doctor was pretty sure he had
seen in on both the external and vaginal ultrasounds taken two weeks
earlier. He wanted to let our baby get a little bit bigger and do
another ultrasound before he told us.

If you guys (that's Ohioan for "y'all") want to talk, my e-mail is
cindi@....

With heartfelt empathy,

Cindi

Your note was timely as I have been pondering our experience a lot
the last few days.  When Anna Louise was diagnosed with anencephaly,
my daughter was 4 and my son was 15 months.

We decided to carry our daughter as long as we could - 38 weeks.  I
was already 22 weeks when we found out about her condition.  Both of
my children already knew I was pregnant and my 4 year old was very
perceptive -- she noticed the crying and wanted to know what was
wrong.  At that point we told her that our baby was not going to be
able to stay with our family because she did not have the parts of
her body that she needed to do all the things our elder daughter and
son could do (walk, run, eat, breath, play, etc...).  We talked to
her about how happy we were to have Anna Louise be part of our family
and how sad we were that she could not stay here with us.

She had already been through the recent death of my father and so she
was somewhat prepared spiritually.  We talked to her about how Anna
Louise's body was going to be buried with grandpa but that her spirit
would be with her Heavenly Father.  We also bought the casket early
and all put our handprints and names on it.  At the cemetery, we all
helped put dirt on the casket (the kids had little spades) and then
we each laid a baby rose on top of the grass.  When we go back, I
often let the kids bring something to leave there.

I really found that as a parent, I knew what was the right thing for
my daughter based on her personality and previous experiences.  We
let her hold Anna Louise and she said things about her appearance
that were sort of upsetting to me but pretty much the way kids that
age are.

I wish you courage in knowing what is best for your son!!

Jennifer, mom to Jessica, Michael, Anna Louise b/d 4-9-99, and Hallie
Mae

Dear Keith,

We have been in that same place twice.  The first time our son was only 2.
He saw her at the funeral home, but he was scared.

The second time he was three.  We told him that his sister Malia had a broken
head like her sister Maria.  We explained everything in simple terms. This
time he was at the hospital, and held her.  He even "tickled" her.  We have
pictures of him holding her.  We wish that we had done something similar with
Maria but he was young.

Your son should have the time to grieve for his sibling, and maybe even see
the baby.  We first saw Malia and then chose to let our son see her.  Malia
was bruised and we explained that.  He looked at her head and we explained
that also.

Our son still talks about how he tickled his sister, and that he held her.
He even talks about Maria.  He grieved for his sisters, but somehow seeing
Malia he could say "Oh she had a broken head.  And she is in heaven with
Maria."  He even then asked if Maria's head looked like that.

You have to take it easy and explain everything simply.  That includes any
bruising, and there will be, the head.  And also explain what happens after
the baby dies.  That the baby is staying at the hospital, but has already
gone to heaven.  Even if you don't let your son see his sibling, please tell
him that it is NOT going to happen to him.  A few months later our son got a
bruise and he thought he was going to get a broken head.  We explained that
to him alot better than we did before.

I hope that this helps in some way.  Our daughters were 23 weeks and 27 weeks
at their time of birth/death.  Please let me know if I can help you in
anyway.  Thank you.  Mary H.

Cindy do you happen to be the same Cindy from Marinewives.com??

Jennifer wrote:
>I really found that as a parent, I knew what was the right thing for
>my daughter based on her personality and previous experiences.

I think this is the most important point.  Well-said. A parent is
going to be the person who knows best what his or her child can
handle, wants to hear, needs to know, and the speed at which the
child will be able to process it. All of us can share our
experiences, and professionals can weigh in with their opinions, but
the final decision of what, when, and how much to tell can't be set
in stone. Some kids won't be able to handle it; some will handle it
far better than we think; some will figure it out for themselves if
it's not explaind and leap to just the worst conclusions. Keith, you
sound like you're sensitive and in touch with your son. Knowing that,
whenever you talk to him about the baby, just be confident that
you'll have that parent-sense which tells you exactly how much he's
ready for at that moment, and you  and Martha and he will do fine.

Jane

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Jane Lebak, tabris@...

"I have found the paradox that if I love until it hurts
then there is no hurt, only love." -Mother Teresa

My name is Kim and my baby, Heather, died at 19 weeks, two weeks and
two days ago. It was July 27, 2000. My due date was December 24th. I
had a D&E and now deeply regret not holding my daugther. It would be
too lengthy to explain why I chose the D&E, but I wish I had taken
more time to decide. However, all I can say is, I probably would have
had regrets no matter what my choice. I am sorry we are all here b/c
our babies died, but at least we can talk to people who understand
loss. Please take it easy on me for choosing the D&E. I'm having a
hard time with it.

I will not decide whether to have another child for many months, but
I still think about it all the time. How many of you had more than
one baby with anenecphaly (or spina bifida?) I'm terrified to go
through this again. I have also already had three m/c's at 5.5 weeks,
before Heather. I have one living daughter, Shannon, who is 17
months. Part of me thinks that she was my miracle baby and that I
should count my Irish blessings and not try again. Part of me cannot
imagine life without another child. I've never felt as good or
successful about anything as I do about being a good mother.

Speaking of which, how do I go about being a good wife and mother
again? Some days I'm so lifeless and worthless. I feel like I'm not
in control of my emotions one bit. Any tips on survival?

Also, any advice about early testing? Have any of you done CVS? Did
you get genetic testing before trying again, or will you?

Thanks for your responses, in advance.

Kim

Kim,
When I lost my baby daughter, it was 1974..... I was in my ninth month and
was xrayed because my daughter thought I was having twins..... It was then
that the xray showed that there was no skull.  The c section was done the
next morning.... I had a three year old daughter at the time.  Ultrasound was
not done in my area in 1974.  It was really a shock for me, and I did not
think I would ever be the same.  Perhaps, I am not, but, I can tell you that
time heals a lot of the pain.  In 1976, I had a healthy son.  My daughter is
married and has had a son, and is now expecting again.  I worry that this
could happen to her and wonder if the odds of her having an anencephalic baby
are higher because it happened to me.  You just hang in there..... and be a
good mommy to that little one you have.  God Bless.

Kim,
I am so sorry for your loss. Please don't feel bad for the choices that you
made. Any choices are always questionable to each of us. The biggest question
being...why did this happen to me? We all have to do what we feel is best at
that moment. I truly believe that we know what is best for our baby and for
us at that given moment. I feel there is a stronger power pointing us in the
right direction. A good way to look at is...is that God has chosen our babies
to be his Angels. I truly believe this. I too, lost my baby to Anencephaly at
20 weeks. I lost him November 16, 1999. I don't think that there is anyway I
could have made it through the last 5 months...mentally.  I was a total
wreck. It was my second loss (first was an ectopic at 8 weeks-emergency
surgery) that year. I had this calm feeling come over me that my decision was
the right one. I have never once regretted that decision. Noone is here to
judge you. We are here for support and to offer you a shoulder to lean
on...words of love. I pray that you can make it through the months ahead. It
is hard, I can't lie. I think about my little boy every second of every day.
I miss him terribly and all of the times I had planned with him. But, I have
a strong feeling of peace knowing that he is so proud of me and the things I
am doing to be strong. As well as, all of the little ways I remember him and
honor him each day. What you have been through will never change or lessen in
anyway shape or form. It was a life changing experience that we have each
delt with. It is heartbreaking and the answers are few. What we do know...is
that you lost your precious baby and you didn't want to. There will be a time
that comes where you understand a little bit better, but just live it day to
day. Believe that you are a wonderful mother to your precious child on earth
and the children you have in Heaven. Because you are!!! I will pray for your
strength through this hard time.
Love, Katie

In a message dated 8/12/00 3:38:42 PM Dateline Standard Time, kimg7@...
writes:

<< My name is Kim and my baby, Heather, died at 19 weeks, two weeks and
  two days ago. It was July 27, 2000. My due date was December 24th. I
  had a D&E and now deeply regret not holding my daugther. It would be
  too lengthy to explain why I chose the D&E, but I wish I had taken
  more time to decide. However, all I can say is, I probably would have
  had regrets no matter what my choice. I am sorry we are all here b/c
  our babies died, but at least we can talk to people who understand
  loss. Please take it easy on me for choosing the D&E. I'm having a
  hard time with it.

  I will not decide whether to have another child for many months, but
  I still think about it all the time. How many of you had more than
  one baby with anenecphaly (or spina bifida?) I'm terrified to go
  through this again. I have also already had three m/c's at 5.5 weeks,
  before Heather. I have one living daughter, Shannon, who is 17
  months. Part of me thinks that she was my miracle baby and that I
  should count my Irish blessings and not try again. Part of me cannot
  imagine life without another child. I've never felt as good or
  successful about anything as I do about being a good mother.

  Speaking of which, how do I go about being a good wife and mother
  again? Some days I'm so lifeless and worthless. I feel like I'm not
  in control of my emotions one bit. Any tips on survival?

  Also, any advice about early testing? Have any of you done CVS? Did
  you get genetic testing before trying again, or will you?

  Thanks for your responses, in advance.

  Kim
   >>
Hi Kim,
I'm sorry for the loss of your precious Heather.  You are right when you say
you would probably have regrets no matter what decision you made.  I think it
is common to wish that you could do some of the things over again because we
would have made different choices had we had more time to think.  Personally,
I feel as if I was in such a whirlwind of emotion that some of the decisions
made "for me" were really decisions I should have made for myself.  But you
know what they say, hindsight is 20/20.  I was in my 35th week when a routine
  ultra sound detected anencephaly.  That very day I was induced and my
daughter was born alive the next day and lived her entire life, 45 minutes,
in my arms.  Looking back I see that the doctors didn't even ask me what I
wanted to do,  it was as if there was no choice.  It never occurred to me to
say "wait, I need time to think."  We could beat ourselves up but, the fact
is that none of us wanted this to happen and all of us would have done
whatever we could have to save our babies.  It simply was not our choice to
make, the result would have been no different had we made different choices.

I also had a living child when I lost Kimmie.  I was obsessed with getting
pregnant again after Kimmie died, and did so about 8 weeks later.  Although,
I love my daughter who was born 11 months later, I really believe I should
have waited longer, again, hindsight.  I think I expected the pain of losing
Kimmie to disappear when I had another baby.  It does not work like that.  No
one could have convinced me of that then so, I think your waiting to decide
on having another baby is a very admirable one.

All I ever wanted to do was be a mother and when I lost her, I felt like the
one thing I wanted so much was something I must not have been very good at.
Why else would God have taken my baby?  I know now that I was just searching
for the answer as to "why"?  I wish I could tell you how to get a grip on
your emotions.  Don't expect too much of yourself, cry when you feel like it,
smile when you feel like it.  I tried to control my emotions during my
pregnancy with my next baby because I didn't want my state of mind to be
harmful to the baby.  In reality that just made my journey through the grief
even longer.  There is no "getting over the death of a child" there is only
"getting through it."  You will make it, you will laugh again.  Be patient
with yourself.

I'm glad you found this group.  I wish I had found them when I lost Kimmie.
I wanted sooooo badly to talk to other parents of anencephalic babies.  I had
so many questions that even the doctors could not answer.  I know that if I
had been able to come here, the questions could have been answered by people
who understood and who were not afraid to be honest.

Know that I am thinking of you and am here whenever you need to talk, or
scream or cry or just let off some steam.

Big Hugs,
Kimberly
mommy to earth angels Cheyenne and Chaelynne
and angel in Heaven, Kimmie (May 2, 1997)
(\o/)  (\o/)  (\o/)
  /_\    /_\    /_\

In a message dated 8/12/00 7:46:48 PM Dateline Standard Time,
STprecious@... writes:

<<  worry that this
  could happen to her and wonder if the odds of her having an anencephalic
baby
  are higher because it happened to me.  >>
Hi everyone,
I have OFTEN wondered about this as well.  Does anyone know of any statistics
of how many children of parents who have lost a baby to anencephaly have
suffered the same loss?  Does that make sense??    I know that the
information form that I filled out at my initial OB appt.  asked if anyone in
our families had ever had a baby with a NTD.

Hugs to all,
Kimberly
mommy to earth angels Cheyenne and Chaelynne
and angel in Heaven, Kimmie (May 2, 1997)
(\o/)  (\o/)  (\o/)
  /_\    /_\    /_\

I'm not sure if I'm supposed to start a new thread to answer your Q
or not, Kimberly, but here it goes. In a packet I got from the Dr's
office, it says we have a 1/30 chance of a repeat of any of the open
neural tube defects (spina bifida, anencephaly, or encephalocele.)
People who have never had an open neural tube defect baby have a 1-
2/1000 chance. I don't particularly like those odds. This is from a
packet put out by Children's Hospital Medical Center of Akron, June
2000. I THINK the Dr said that if I took the high dosage folic acid
supps, my odds would change to 1/60.

Kim/Heather ^i^


--- In anencephaly@egroups.com, kimm101429@a... wrote:
> In a message dated 8/12/00 7:46:48 PM Dateline Standard Time,
> STprecious@A... writes:

>
> <<  worry that this
> I have OFTEN wondered about this as well.  Does anyone know of any
statistics
> of how many children of parents who have lost a baby to anencephaly
have
> suffered the same loss?  Does that make sense??    I know that the
> information form that I filled out at my initial OB appt.  asked if
anyone in
> our families had ever had a baby with a NTD.
>
> Hugs to all,
> Kimberly
> mommy to earth angels Cheyenne and Chaelynne
> and angel in Heaven, Kimmie (May 2, 1997)
> (\o/)  (\o/)  (\o/)
>  /_\    /_\    /_\

Kimberly,
Oops, I just re-read your Q and you were asking about what problems
OUR children may have. (blush) I don't know.

Kim/^i^Heather


--- In anencephaly@egroups.com, kimm101429@a... wrote:
> In a message dated 8/12/00 7:46:48 PM Dateline Standard Time,
> STprecious@A... writes:
>
> <<  worry that this
>  could happen to her and wonder if the odds of her having an
anencephalic
> baby
>  are higher because it happened to me.  >>
> Hi everyone,
> I have OFTEN wondered about this as well.  Does anyone know of any
statistics
> of how many children of parents who have lost a baby to anencephaly
have
> suffered the same loss?  Does that make sense??    I know that the
> information form that I filled out at my initial OB appt.  asked if
anyone in
> our families had ever had a baby with a NTD.
>
> Hugs to all,
> Kimberly
> mommy to earth angels Cheyenne and Chaelynne
> and angel in Heaven, Kimmie (May 2, 1997)
> (\o/)  (\o/)  (\o/)
>  /_\    /_\    /_\

>
>Hi everyone,
>I have OFTEN wondered about this as well.  Does anyone know of any statistics
>of how many children of parents who have lost a baby to anencephaly have
>suffered the same loss?  Does that make sense??    I know that the
>information form that I filled out at my initial OB appt.  asked if anyone in
>our families had ever had a baby with a NTD.

I received a package of information from the March of Dimes. In it
was an info sheet on spina bifida (because they don't have one on
anencephaly). They state in there that neural tube defects do not
seem to run in families. They say that 95% of neural tube defects
occur in individuals with no previous family history of them. With no
folic acid supplementation, the chance of a repeat is 1 in 50 or 1 in
40, depending on who compiled the statistics. With folic acid
supplements (up to 5mg/day) it drops to 1 in 100 or far lower, again
depending on who put together the study and how much he/she is being
paid by the vitamin industry. ;-) (Cynical? Me???)

Kim wrote:
>Speaking of which, how do I go about being a good wife and mother
>again? Some days I'm so lifeless and worthless. I feel like I'm not
>in control of my emotions one bit. Any tips on survival?

Treat yourself the way you'd treat something extremely fragile, Kim.
You've just gone through a horrendous loss. Read books on grief and
perinatal loss, and find someone to talk to. Don't worry right now
about being a good wife and mother--just about being a "good-enough"
wife and mother. Don't expect too much of yourself, and don't be
afraid to tell people "no" when you're overwhelmed. Order take-out
every night of the week if that's what you need to do. Take time to
cry. You're not worthless. Emotions are supposed to be out of control
after something like this. If you've never battled depression before,
make sure to get a shower and get dressed every day, get out of the
house every day, eat regular meals,and avoid sugar and alcohol. That
sounds silly, but that's really important and when we're feeling
run-over by grief and life in general, they're hard things to get
done.

Jane

Last night on the Delivery Room show, they delivered an anencephalic
baby at 25 wks.  She was in the hospital for 3 days trying to be
induced.  How long does it usually take?  And why don't they like
doing c sections for this?

No, but I was the deputy editor for Leatherneck, Magazine of the
Marines for a year before we moved down here to Florida. :-) We
served with the Marines for a couple of years at Cherry Point, N.C.
John was a corpsman for 9 years.

--- In anencephaly@egroups.com, jcasta1024@a... wrote:
> Cindy do you happen to be the same Cindy from Marinewives.com??

Hi,

I saw that episode a few months ago.  When I delivered my daughter I was in
my 35th week of pregnancy.  They started my induction at about 4pm and my
daughter was born the next day at 12:30pm.  I think it is probably different
with everyone.  As for why they won't do a c/s, they told me that they will
NOT put a mother through any kind of procedure that would endanger her life
when there is absolutely no chance the baby will survive.  In other words a
c/s is considered surgery and even though the risk to the mother is low, it
is still a risk and the outcome of the baby will be the same.  I begged for
one because with my first baby I was in labor for 36 hours.  I couldn't bear
the thought of going through all of that when I knew my baby was going to
die.  I am glad they didn't listen to me but, back then I thought they were
being cruel.  Now I see it was the best way.

Hope this helps,
Kimberly
mommy to earth angels Cheyenne and Chaelynne
and angel in Heaven, Kimmie (May 2, 1997)
(\o/)  (\o/)  (\o/)
  /_\    /_\    /_\

>Last night on the Delivery Room show, they delivered an anencephalic
>baby at 25 wks.  She was in the hospital for 3 days trying to be
>induced.  How long does it usually take?  And why don't they like
>doing c sections for this?

I was only in "real" labor for an hour, myself, and Emily weighed
about 7 pounds. Some women respond very differently to pitocin than
others do. I was told they don't do c-sections because most of the
time our babies *will* come vaginally, and they're not worried about
a negative outcome because of fetal distress. Because of that, the
only reason they would do a section is for the health of the mother,
and it would take a very severe circumstance for the mother's health
to be jeopardized worse by a vaginal delivery than by major surgery.
This was how my midwives explained it to me when I asked if they
might perform a section so Emily wouldn't have to have any
head-trauma from squeezing during birth. I'm sure others' doctors
have different reasons, though. -jel

Kim,

Life in general after anencephaly is very hard. I didn't care if I
ate or woke up or did anything, but that's how I felt when my grandma
died and that's probably how I'll feel when the next person close to
me dies. Unfortunately, death is a very real part of our lives. But
mourning is not a bad thing. Losing people we love, especially our
babies, is devastating, and there's no reason to expect yourself to
function "normally" -- whatever that may be -- any time soon. Just
because they're gone doesn't mean they cease to exist in our
memories, and don't think that they should or that you're nuts for
not being able to "get over" her. I don't think I'll ever "get over"
my daughter, but I don't think about her every minute of every day,
especially since buying a house and having to do everything that goes
along with it. I miss her very much, but I also know that life goes
on. Time will help lessen the pain, although I doubt it will ever
erase it. Just take it one day or hour or minute at a time.

My suggestion is to see if you can talk to a geneticist. Fortunately,
my OB is a geneticist, so I didn't have to go to anyone different. My
husband and I have already talked to him, and he told us that there
is no reason for me to expect to have another child with anencephaly.
He said he doesn't think my odds have increased or decreased. And he
even said that there is so much about anencephaly that they, the
medical community, don't understand. He personally doesn't think
anencephaly fits neatly into the neurotube defect category. I do
wonder, with your other miscarriages, if there is something going on
there, and perhaps a geneticist can answer that question. Or perhaps
they can just rule out anything genetically, and maybe that can set
your mind a little more at ease. Of course, I'm sure that any
subsequent pregnancy will have more than the usual bouts of worry,
and that's OK. We're human.

I hope you have a good day today.

Cindi

--- In anencephaly@egroups.com, kimg7@h... wrote:
> My name is Kim and my baby, Heather, died at 19 weeks, two weeks
and
> two days ago. It was July 27, 2000. My due date was December 24th.
I
> had a D&E and now deeply regret not holding my daugther. It would
be
> too lengthy to explain why I chose the D&E, but I wish I had taken
> more time to decide. However, all I can say is, I probably would
have
> had regrets no matter what my choice. I am sorry we are all here
b/c
> our babies died, but at least we can talk to people who understand
> loss. Please take it easy on me for choosing the D&E. I'm having a
> hard time with it.
>
> I will not decide whether to have another child for many months,
but
> I still think about it all the time. How many of you had more than
> one baby with anenecphaly (or spina bifida?) I'm terrified to go
> through this again. I have also already had three m/c's at 5.5
weeks,
> before Heather. I have one living daughter, Shannon, who is 17
> months. Part of me thinks that she was my miracle baby and that I
> should count my Irish blessings and not try again. Part of me
cannot
> imagine life without another child. I've never felt as good or
> successful about anything as I do about being a good mother.
>
> Speaking of which, how do I go about being a good wife and mother
> again? Some days I'm so lifeless and worthless. I feel like I'm not
> in control of my emotions one bit. Any tips on survival?
>
> Also, any advice about early testing? Have any of you done CVS? Did
> you get genetic testing before trying again, or will you?
>
> Thanks for your responses, in advance.
>
> Kim

Inducing varies for every woman. When inducing early, medication is used to
ripen the cervix so that is will thin out and the woman will beable to
dialate so it varies depending on the woman. As for the c-section, I was
told by my dr that the potential risks to the mom for an infant who would
not survive outweighed the need for a c-section. They told me that a
c-section would have been out of the picture unless it was medically
necessary for my health.
Peace,
Tammy H ^i^jessica's Mom
----- Original Message -----
From: <cdickey@...>
To: <anencephaly@egroups.com>
Sent: Monday, August 14, 2000 7:47 AM
Subject: [anencephaly] TLC show


> Last night on the Delivery Room show, they delivered an anencephalic
> baby at 25 wks.  She was in the hospital for 3 days trying to be
> induced.  How long does it usually take?  And why don't they like
> doing c sections for this?
>
>
>
>
>
>
>
>

Telling older siblings:
     I have 3 boys. We told them immediately as we found out that something
was wrong. We beleive in being honest with our children. At first though we
weren't really sure what was wrong so we just told them something was wrong.
Then when we knew more we told them more. Their ages are 9,7 and 3. We told
their school guidance counselor so she could help them or they could talk to
her when needed. We didn't take them to the hospital because she had another
disease along with anencephaly so she only had a torso and arms without bones
and then half her head. I still feel honesty is the best policy for my
children. I also think that you have to know your child to know what is best
for your child. Our religion has helped out immensely as well. We beleive
that families are forever so to them it is just a matter of time before we
are joined back together. I think this knowledge for them has made a huge
difference. They are comfortable knowing that their little sister is with
their Heavenly Father until we get back together again.

Kim,
     I induced early at 20 weeks. I went through L&D. I have a friend that was
not able to go through L&D because her insurance wouldn't cover it. She had
to have a D&E also because she couldn't afford L&D. Don't beat yourself up
over it. There is a site for  those of us who made "a heartbreaking choice"
If you are interested in that group let me know. Keep us posted on how you
are doing. I hope that we can be of some comfort so that you know you are not
alone.

Question about stats.
     The odds are 2%  for all of us and 5% is you have a family member that
has had a ntd. MY dh and I are in the 5% category which is 1 in 20. I
honestly don't beleive mine was because of folic acid. I was taking vitamins
with folic acid and although you should increase you dosage, I beleive ours
was from genetics and also I was in a hot tub a few days before I knew I was
pregnant. Just my opinion though.

Support group:
     I think it is a great idea. I would have liked to have a support group to
go to as well.

Mary M

I forgot to tell you about this. I was 20 weeks when we induced. We started
at 8am and she was born at 1am. I was told it can last up to 3 days but I
don't think that is the norm.
Mary M

I saw it too. It was hard, but I wanted to see it since I didn't
deliver. My Dr said it could take up to three days and even then
sometimes you still had to do a D&E. But I was 19 weeks. The gal on
TV was too far along to have a D&E, physically. They don't like doing
c-sections b/c it is major surgery and serious complications can
arise from any major surgery. Some of those complications include
messing up her chances for another baby, and even death for the
mother. That is my understanding.
Kim/^i^Heather


--- In anencephaly@egroups.com, cdickey@h... wrote:
> Last night on the Delivery Room show, they delivered an
anencephalic
> baby at 25 wks.  She was in the hospital for 3 days trying to be
> induced.  How long does it usually take?  And why don't they like
> doing c sections for this?

I was told that at 25 weeks, which is when they found
out about my son, that the risk of complications on a
c-section outweighed the induction.
--- cdickey@... wrote:
> Last night on the Delivery Room show, they delivered
> an anencephalic
> baby at 25 wks.  She was in the hospital for 3 days
> trying to be
> induced.  How long does it usually take?  And why
> don't they like
> doing c sections for this?
>
>
>
>
>

>
>
>


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Don't know about time it 'usually' takes - my 18 weeker induction started at
9.am Sat morning and baby came Sunday at 11.20am - so 26 hours.  Lady in
next room having termination for other birth defect had her's in three hours
from start to finish.  Maybe it's something about anencephalics - possibly a
connection to lack of pituitary (sp?) gland?

Sue Watson



>Last night on the Delivery Room show, they delivered an anencephalic
>baby at 25 wks.  She was in the hospital for 3 days trying to be
>induced.  How long does it usually take?  And why don't they like
>doing c sections for this?
>
>
>
>
>
>
>
>
>