Hello everyone and welcome to our new members!

I thought I had better get off my bum and let you know I am still
around, but just not as much as I was (or should be!).

I do read all of your posts, so I know there are some big
congratulations due, and also some newbies who deserve a formal
welcome.

A bit about me, for those who don't know (the rest of you can just
skip a few paragraphs LOL).

I'm Leigh, co-founder of this group (in name only as Lea does ALL the
work, and deserves all the credit!).

My story is in the files section, but briefly, my identical twin boys
(IVF assisted) were born in 2002, 8 weeks premature.  Tyson, who was
diagnosed with Anencephaly at our 12 week u/s, lived for only 10
minutes after birth.  Reilly spent the first 5 weeks of his life in
Special Care, but is now a very lively 6 yr old.

One year after their birth, I was diagnosed with aggressive, non-
hormonal, breast cancer, lost my left breast and underwent 6 months
of chemo.

Luckily, we had embryos in storage, and in 2005 we welcomed fraternal
twins Jed (boy) and Dael (girl).

Now, for an update on what's been happening lately................

Last month I reached my 5 year remission
WOOOOOOOOOOOOOOOOOHOOOOOOOOOO!!!!!!!

Still on the waiting list for breast reconstruction (after 2 years!)
GRRRRRRRRRRRRR!

Am a little closer to having a new kitchen, and one extra room in our
house (we have 5 people in a 11sq, 2 bdrm house!).

The rest of my life is the normal boring stuff - work, coughs and
colds, housework, and (s)mothering.

So, in conclusion (LOL), I am still here, and still read EVERYTHING,
so even if you don't hear from me for a while, it does not mean that
I am not interested.  Usually it's just that I am too busy to reply,
or have nothing interesting to say.

But, if any of you need my help or want to ask me ANYTHING about my
experiences, I am only a few keystrokes away.

Leigh

Tammie
You have a beautiful family. The new man is soo cute.
--- In as_ap@..., Tammie Robertson <abbey_april@...>
wrote:
>
> I have a few photos for you all to see of my new addition to the
family. I hope that these pics give hope to you all.
>
>
>
> ----- Original Message ----
> From: Lea <leannec72@...>
> To: as_ap@...
> Sent: Thursday, 28 August, 2008 5:26:07 PM
> Subject: [as_ap] Tammie
>
>
> Hey Tammie, I've come to give you a gentle poke *pokes Tammie less
> than gently* to post some pics for the new man in your life!!!!
>
> The birth of a rainbow baby is so special, I for one love to share
in
> the joy of subsequent babies coming along, it gives me a great
sense
> of hope.....and I don't know anyone who deserves the happiness of
> holding a beautiful healthy baby in their arms more than our AS~AP
> members do you?
>
> *more poking*
>
>
>
>
>       Win a MacBook Air or iPod touch with Yahoo!7.
http://au.docs.yahoo.com/homepageset
>

It was wonderful to meet with you Vanessa. I do apologise if at
anytime i overtalked. It felt like such a weight was lifted to be
able to share my family and Mercy Grace's journey with you. I know
your sweet Matthew is truly blessed to belong to your family. I will
continue to pray for you and remember that my home and heart will
always be open to you. I feel deeply blessed by the time i spent
with you.

Didnt even think to get out the camera. Hopefully there will be a
next time.

--- In as_ap@..., Chris & Vanessa Murphy
<chrisandvanessamurphy@...> wrote:
>
> Yes, we did meet. Thanks Pettina for opening up your home and your
life with me, I really appreciate it. I think the biggest thing I
took away was to make the most of Matthew's life in each moment (and
don't just focus on his inevitable death), because you never know
how long that life will be. Mercy was a beautiful baby and how
wonderful it was to hear how long she got to bless your family.
> Love Vanessa
> PS Sorry Lea, no pics!!
>
> --- On Thu, 28/8/08, Lea <leannec72@...> wrote:
>
> From: Lea <leannec72@...>
> Subject: [as_ap] Vanessa & Pettina - did you get together today?
> To: as_ap@...
> Received: Thursday, 28 August, 2008, 5:21 PM
>
>
>
>
>
>
> Hey you beautiful girls, did you manage to get together today? I
> was beaming when I saw you two were planning to meet in person.
> That's just so special, that this group can start spreading out
> into 'real life' (oh I know everything here is very real too my
> friends) and real hugs can be felt between very special parents.
>
> I also hope you got some pics!
>
> --- In as_ap@yahoogroups. com.au, Chris & Vanessa Murphy
> <chrisandvanessamur phy@> wrote:
> >
> > Absolutely! She is lovely.
> > It certainly didn't fill me with any additional fears - like you
> say, you want your doctors to be informed. And given my
professional
> interest in research in the area of pregnancy, I was keen to find
> out more from the source!
> > I am going to meet Pettina today - she sounded lovely on the
phone
> and it is great that we have this network of people who have been
> through what we're going through.
> > Vanessa
> >
> >
> > --- On Wed, 27/8/08, Lea Coleman <leannec72@ ..> wrote:
> >
> > From: Lea Coleman <leannec72@ ..>
> > Subject: Re: [as_ap] Re: Results from a worldwide Anecephaly
> study - very interesting
> > To: as_ap@yahoogroups. com.au
> > Received: Wednesday, 27 August, 2008, 9:15 PM
> >
> >
> >
> >
> >
> >
> >
> >
> > Monika is just the most wondering and inspiring woman wouldn't
you
> agree, I have just got so much admiration for her!  How amazing
is
> her English!!!!  It never ceases to amaze me just how
articulate
> she is in a second (perhaps 3rd) language, she does better than
many
> from english speaking countries haaa.
> >  
> > I am glad you feel reassured after reading more........ ....the
> effort she is putting in is to help mums like yourself to make
> informed choices, I am sorry if reading the report filled you with
> additional fears Vanessa, that wasn't the intention, instead it
was
> meant to give you some ideas to make decisions based on many
> people's realities, not what your doctors read in a book or online
> or heard at a convention!
> >  
> >  
> > Lea xxxxxx
> > Mum to Sage, Nara, angel baby ~Ben~ and rainbow baby Arden
> > Give sorrow words; the grief that does not speak whispers the
o'er-
> fraught heart and bids it break.  ~William Shakespeare
> >  
> >
> >
> >
> >
> > ----- Original Message ----
> > From: Chris & Vanessa Murphy <chrisandvanessamur p hy@yahoo.
com.au>
> > To: as_ap@yahoogroups. com.au
> > Sent: Wednesday, 27 August, 2008 8:09:17 PM
> > Subject: Re: [as_ap] Re: Results from a worldwide Anecephaly
> study - very interesting
> >
> >
> >
> >
> >
> >
> > Hi everyone,
> > Further to our emails yesterday, I did contact the study author
> and she very kindly wrote me a long reply. I thought I'd share it
> with you - for those that might be interested in a bit more
> info/explanation on the study results, here it is! If not, please
> feel free to ignore! Some of my questions are inserted in the
reply.
> > I certainly feel somewhat reassured by getting some more
> information from them about membrane rupture and still birth.
> > Vanessa
> >  
> > Dear Vanessa,
> > thank you very much for your interest about the report.
> > I'm so sorry about the diagnsosis of your son and the hardship
and
> pain you are going trough :-(   What's his name?
> >  
> > I have a question about your finding regarding the risk of still
> birth
> > following artifical rupture of membranes. You indicate that
there
> was a
> > higher risk of still birth after rupture, as opposed to
> spontaneous rupture
> > of membranes. I did not see much raw data or explanation for
this
> in the
> > original publication, but it also seems that further data has
been
> collected
> > since this time.
> >  
> >
> > Yes, I continue to collect data and have now data about 418
babies.
> >  
> > I began to gather those data because too many times, when
reading
> the stories of other affected families, I came across
misinformation
> that the doctors had told the parents. You know, those doctors had
> maybe seen one or two cases in their practice, read one or two
> articles about anencephaly and because in those few cases it
> happened like this or like that, for them it must always be like
> that.
> > Having read hundreds of stories and been in touch with as much
> affected families, I could see that things were different. How
many
> parents had been told that their baby would die in utero and if
not
> had almost no chance to be born alive? The stories of the parents
> showed that death in utero is rather an exception. So I began to
> gather as much information about the birth of babies with
> anencephaly as possible.
> > I don't work in the medical field but before I became I stay at
> home mom, I used to be a laboratory assistant (worked with plants
> and their diseases). This work in the fundamental research taught
me
> some basics of statistics etc.
> > When I had gathered data about ~ 150 babies, I contacted a Swiss
> specialist for NTDs, Prof Eugen Boltshauser,  and he
immediately
> answered that this data should be published. As it was the first
> publication of this kind about anencephaly, we decided to keep it
> rather short and to emphasize on the fact that carrying to term
can
> be a good way for families, and what the expectations of life are.
I
> would have loved to go more into details, but Boltshauser felt it
> would be better for a first try to keep it more general. As I have
> no experience in publishing, I would not have been able to do this
> alone, and the article would probably never have been accepted by
> the BJOG without his support.
> >  
> > To answer your question, it may be the easiest if I give you the
> current stats. Please excuse if there are English mistakes, I'm
from
> Switzerland and English is a foreign language for me. So if there
> are things that are not clear, that I did not write well, please
> feel free to ask. The texts on the site are proof-readed, but for
> this mail I will just write as I can.
> >  
> > So, I have data about the birth and life of 418 babies. 29 (7 %)
> of them died in utero during the pregnancy, before any labor or
> induction.
> >  
> > This lets 389.
> >  
> > 127 among them had been born by c-section.
> > 8 (7 %) were born still, but for 3 of them the c-section was
only
> performed after complication during labor, and 4 others had other
> major birth defects.
> > The reasons for the c-section were in a few cases medical
reasons
> like the position of the baby, twin pregnancy with the baby with
> anencephaly presenting first, complications during labor, previous
c-
> sections,. .. .
> > In most cases, the parents requested the c-section because they
> wanted to have maximal chances that their baby survives his birth,
> because they thought that a vaginal birth would be too much
> psychological distress, or sometimes the doctors told them that a
> baby with anencephaly could not be born vaginally (just one of
many
> misinformation that makes me so sad).
> >  
> > The other 262 were born by a vaginal birth.
> > In 110 cases the amniotic bag was ruptured artificially, 34
(31%)
> among them were stillborn.
> > In the 152 cases were the bag ruptured by its own, 32 (21%) were
> stillborn.
> > The gap is not VERY big, but there is a significant difference.
> >  
> > I am wondering how you ascertain that the baby was still
> > born and presumably died during the labour, as distinct from
died
> in utero
> > prior to labour (question 11).
> >  
> > For most of the data, I not only get just the answers to the 14
> questions on the report page, but the whole story of the pregnancy
> and birth. So the distinction is easy to make. In case of a death
in
> utero, the parents get the sad news that their baby died in utero
> and then go to the hospital to induce labor.
> > Artificial rupture is not the standard induction. Usually, the
> induction starts with some medication (in the US, they often use
> pitocin). As you have read for sure, often the birth of a baby
with
> anencephaly doesn't start on itself. So parents chose to induce
with
> the help of some medication at a moment that they feel right. Many
> parents dont want to wait 40 weeks or even longer, but induce
> before. And even if many women who had given birth to healthy
> children say that once labor starts, it's quite similar to the
labor
> and birth they had with their healthy children, induction
sometimes
> takes a LONG time before effective pains start and open the
cervix.
> It's a highly emotional time, for the parents, but also for the
> medical staff. My opinion is that in such long inductions, the
> medical staff wants to help the mother (or just make things going
on
> because they're tired themselves of the situation) and brake the
> bag. Not because it would be really needed
> > from the medical point of view, but because they want things
> going on.
> > But this is just my opinion, and beeing that I always had very
> quick labors and births (Anouk was my 4th child, I had her induced
> at 40 weeks and once the pains started she was born within 30
min),
> I'm not on the right place to "judge" anybody. If I could
recommand
> anything (but again, I have no medical training, just researched
> anencephaly for over 8 years), I'd say to wait with the induction
> until 40 weeks. This gives the baby time to gain weight, and gives
> the mother's body more chances for beeing ready to give birth.
> > I hope that I didn't give you too much information you didn't
even
> want. Just tried to explain the report.
> > Please feel free to write me again whenever you want, to ask
> further questions or just tell me about your journey with your son.
> > If you're living in the US, please visit the website of "Now I
lay
> me down to sleep"  http://www.nowilaym edowntosleep. org 
They
> provide professional photographers who will come for free to
provide
> beautiful photography and videography services in a compassionate
> and sensitive manner. They really do a great job.
> >  
> > Warm regards,
> >
> > Monika Jaquier
> > http://www.anenceph alie-info. org
> >  
> > ----- Original Message ----- From: "Vanessa Murphy"
> <vemurphy@gmail. com>
> > To: <webmaster@anenceph a lie-info. org>
> > Sent: Monday, August 25, 2008 5:29 AM
> > Subject: report_anencephaly
> > - Hide quoted text -
> >  
> >
> > I have read with great interest your article in the BJOG 2006
and
> note with
> > interest that information is still being collected from parents
of
> > anencephalic babies. I am currently 37 weeks pregnant with a
baby
> boy with
> > anencephaly. I am also a medical researcher myself, also in the
> field of
> > pregnancy, and as a result sought out any published literature
> that I could
> > find on the topic. I will certainly be happy to email my answers
> to your
> > questions and participate in your survey after my baby is born.
> > I have a question about your finding regarding the risk of still
> birth
> > following artifical rupture of membranes. You indicate that
there
> was a
> > higher risk of still birth after rupture, as opposed to
> spontaneous rupture
> > of membranes. I did not see much raw data or explanation for
this
> in the
> > original publication, but it also seems that further data has
been
> collected
> > since this time. I am wondering how you ascertain that the baby
> was still
> > born and presumably died during the labour, as distinct from
died
> in utero
> > prior to labour (question 11). My thought was that perhaps if
the
> baby had
> > already died prior to labour, there was more reason for the
> doctors to
> > artifically rupture membranes to assist the birth to continue,
and
> that
> > rather than the rupture causing the still birth, the prior death
> was
> > associated with more artificial rupturing.
> > I would be interested in your take on this. As a mother,
naturally
> I hope
> > and pray that my son will be born alive. I have yet to discuss
> your finding
> > with my obstetrician, but as I understand it, a standard
induction
> of labour
> > involves artificial rupture of membranes as part of the process.
> > Thanks for your time and your data collection.
> > Vanessa Murphy
> >
> > --- On Mon, 25/8/08, Lea Coleman <leannec72@yahoo. com.au> wrote:
> >
> > From: Lea Coleman <leannec72@yahoo. com.au>
> > Subject: Re: [as_ap] Re: Results from a worldwide Anecephaly
> study - very interesting
> > To: as_ap@yahoogroups. com.au
> > Received: Monday, 25 August, 2008, 7:43 PM
> >
> >
> >
> >
> >
> >
> > Ahh girls, I can understand the tears!  It was hard reading,
but
> so informative and honestly, if I am faced with questions from
> someone about what to do I will draw on that info for their advice
> for sure.
> >  
> > Vanessa, I was particularly keen to share it with you as you, I
am
> sorry if it has caused you concern that wasn't the intention of
> course!  I think that knowing every statistic in the book
doesn't
> change what will be.......... ..but you have the information and
can
> discuss it further with your doctors if you so wish.
> >  
> > Liz, I think no matter what we choose during our anen
pregnancies
> we are all left with 'what ifs' in regards to the choices we
didn't
> make.  I often catch myself wondering how different my life may
be
> now if I'd taken the other options available to me.......... I
have
> very few regrets and choosing to carry on with my pregnancy isn't
> one of them, but I can understand why others choose to say goodbye
> to their darling babies earlier than I did. 
> >  
> > Again, I think the brilliant thing about this information is
that
> we can share it and use it to give counsel to others...... ....as
> Liz so beautiful shows in her touching message, health care
> professionals don't always give us as much information as we want
or
> need when it comes to the crunch.
> >  
> >  
> >
> >
> >  
> > Lea xxxxxx
> > Mum to Sage, Nara, angel baby ~Ben~ and rainbow baby Arden
> > Give sorrow words; the grief that does not speak whispers the
o'er-
> fraught heart and bids it break.  ~William Shakespeare
> >  
> >
> >
> >
> >
> > ----- Original Message ----
> > From: Elizabeth <epsmith@bigpond. com>
> > To: as_ap@yahoogroups. com.au
> > Sent: Monday, 25 August, 2008 7:12:55 PM
> > Subject: [as_ap] Re: Results from a worldwide Anecephaly study -
> very interesting
> >
> > Like Tammie i read as much as i could before my eyes started
> filling
> > up with tears. As i didn't go to full term with Angela i didn't
do
> > the questionaire. I've been thinking alot lately about all of
the
> > regrets that i have when it comes to not going to full term. I
> wish
> > that the doctors had gave me so much more information than what
> they
> > did. I regret that i didn't get to see, cuddle or kiss Angela
good
> > bye but at the same time i don't think that i would have handled
> it
> > emotinally if i did go to full term with her. Its some thing
that
> i
> > will never know the answer too. I don't know if it is because i
am
> > pregnant again and my hormones are up the wall but i haven't
been
> > able to get it out of my head for weeks now. Don't get me wrong,
i
> am
> > so happy that we have another little man on the way but i still
> can't
> > get the "what if" out of my mind! Thanks Lea for finding this
> link.
> > As heartbreaking as it was to read all the information, it was
> still
> > helpfull.
> >
> > --- In as_ap@yahoogroups. com.au, Tammie Robertson
> <abbey_april@ ...>
> > wrote:
> > >
> > > I read as much as I could but the tears filled my eyes and
> suddenly
> > I could not see the page I was reading. It is just so sad I wish
> > there was something we could do to help these babies. 
> > >
> > >
> > >
> > > ----- Original Message ----
> > > From: Lea <leannec72@ .>
> > > To: as_ap@yahoogroups. com.au
> > > Sent: Sunday, 24 August, 2008 11:52:48 PM
> > > Subject: [as_ap] Results from a worldwide Anecephaly study -
> very
> > interesting
> > >
> > >
> > > Please take a peek at this link
> > >
> > > http://www.anenceph alie-info. org/e/report. php
> > >
> > > I would strongly recommend reading these findings, it's so
> > > interesting, I participated in this study through the
> Anencephaly
> > Info
> > > org (you can go to their main site from the link).
> > >
> > > I was fascinated to read the statistics regarding live birth
of
> > anen
> > > babies depending on delivery choices for those who choose to
> > continue
> > > their pregnancies til term....it gave me goosebumps.
> > >
> > > there is also an opportunity to respond to the questionaire
for
> > anyone
> > > interested.
> > >
> > > I hope you are all travelling well, my love and thoughts are
> with
> > each
> > > of you always.
> > >
> > > Lea xxxxxx
> > >
> > >   
> > >
> > >
> > >      Win a MacBook Air or iPod touch with Yahoo!7.
> > http://au..docs. yahoo.com/ homepageset
> > >
> >
> >
> >
> > ------------ --------- --------- ------
> >
> > Yahoo!7 Groups Links
> >
> >
> >
> >
> >
> >
> > Win a MacBook Air or iPod touch with Yahoo!7- Find out more.
> >
> >
> > Win a MacBook Air or iPod touch with Yahoo!7- Find out more.
> >
> >
> > Win a MacBook Air or iPod touch with Yahoo!7- Find out more.
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > Win a MacBook Air or iPod touch with Yahoo!7.
> http://au.docs. yahoo.com/ homepageset
> >
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>       Win a MacBook Air or iPod touch with Yahoo!7.
http://au.docs.yahoo.com/homepageset
>

HI Lisa

it wasgreat to read your post. I know how difficult those first
months of pregnancy are. I am currently 28 weeks with my first post
baby. I will be thinking of you.

--- In as_ap@..., Lea Coleman <leannec72@...> wrote:
>
> Lisa, that was an amazing first post, I am so glad you 'finally'
took the leap into talking with us all. I'm so pleased that you and
Pete have been reading....I think whilever someone is getting what
they need out of the group at the time it doesn't matter how they
participate, just as long as they know they belong.
> Reading about how quickly things went with your decision making
with Alice was familiar, it's all such a blur, but at the time every
minute seems to be an excruiciatingly painful eternity don't you
think? 
> It sounds to me like my post asking our beloved lurkers to say hi
couldn't have come at a more important time to you and Pete, with
Alice's due date tomorrow you're going to need a few shoulders to
lean on, so here we are, big shoulders in this group love!  
> What are you planning to do to remember Alice tomorrow Lisa? 
> Being 9 weeks pregnant at this time must be nerve wracking, have
you already had at least a dating scan?  Are you having a NT scan
in a couple of weeks? Man that wait does your head in doesn't it. 
Let us all know when you're booked in for so we can make sure we're
here for you beforehand....we'll all have our fingers crossed for
you.
> Anyway, I hope tomorrow passes gently for you, that you find a
special way to remember a precious little girl who changed your
lives on the anniversary of her due date....and that you feel her
presence near you always.
> Welcome officially to the group, and let Pete know he's welcome to
natter with us anytime, we'd love a man's perspective.
>
>  
> Lea xxxxxx
> Mum to Sage, Nara, angel baby ~Ben~ and rainbow baby Arden
> Give sorrow words; the grief that does not speak whispers the o'er-
fraught heart and bids it break.  ~William Shakespeare
>  
>
>
>
> ----- Original Message ----
> From: pete1701e <praftery@...>
> To: as_ap@...
> Sent: Thursday, 28 August, 2008 8:03:47 PM
> Subject: [as_ap] Re: Lurking members - please say hi to us :-)
>
> Hi Everyone,
>
> Firstly thank you to all for your personal stories and all the
> information that is posted here.  My name is Lisa and my husband
Pete
> and I lost a baby in March this year at 14 weeks.  My husband
signed
> up to the group a while ago now but we have never posted
anything...
> what to say?  It has been helpful, sad, supportive, hopeful - so
many
> things - reading your stories.  I have shed many tears which i
know is
> not a bad thing.
>
> Our baby, who we named Alice, would have been due tomorrow, so it
has
> been a tough week thinking how i might have otherwise been
preparing
> for  her birth.  I don't think i regret our decision to
terminate the
> pregnancy but sometimes i wonder.  It seemed to happen very fast,
we
> didn't really have to rush the decision but there didn't seem a
great
> deal of time either.
>
> On the positive side of things we are blessed to have a 2 and half
> year old beautiful daughter named Bridget, who is just a bundle of
> joy.  I am 9 weeks pregnant, which is also wonderful and i think
makes
> this time when Alice was due a little easier.  Of course it is
also
> the worrying and stressful time waiting for that scan.  My
optimism
> and positivity seems to change almost day by day, it's impossible
to
> imagine going through this again, yet i know it's an unfortunate
> possibility.
>
> I must remind myself though that our life is pretty wonderful.  We
> live in a beautiful place on the south coast of NSW and lead a
pretty
> relaxed lifestyle.  Pete and I are both teachers at the same
school 5
> minutes down the road, with me working 2 days a week.
>
> Well, there it is, i did and it, and feel good that i finally
have.  I
> know Pete reads your posts as often as I do and will hopefully get
on
> here for a chat sometime soon too.
>
> Kind wishes,
> Lisa
>
>
> ------------------------------------
>
> Yahoo!7 Groups Links
>
>
>
>
>       Win a MacBook Air or iPod touch with Yahoo!7.
http://au.docs.yahoo.com/homepageset
>

Hey,
That is a great idea.  I will email my details to you when I get
some time.  I will also post some photos from Troy's 2nd birthday.

Just thought I'd put something out there that I have read a while
ago and that has been on my mind ever since.  When I had first found
out that Isabell had anencephaly, I went straight on the internet to
look it up.  In 2 different studies done in Australia they had found
that anencephaly could be caused in some cases by a maternal fever
within the first 2-3weeks of pregnancy. It also stated that the
first 2-3 weeks was the most crucial time for the nueral tube to
form and for some reason a maternal fever could interrupt this
process.
Troy had picked up some sort of bug that had caused the whole family
to become violently ill.  Fever, vomiting hot cold flushes.  Troy
got it first, myself then my partner.  When I went through my diary,
I had discovered that I was 2 weeks pregnant at that stage.

The next day when we went to the early pregnancy unit I brought this
up to the doctor as the possible cause to the anencephaly.  He
merely scoffed and said that it was just something that happened.  I
later brought it up with the lovely midwife that was looking after
us and she also said that it was not the case and was just something
that happened.

I have just gone through a whole heap of web sites and can not for
the life of me find the information that I first sought out and had
read this information in.  So, basically, I am just wondering
whether anyone else may have been in the same situation as myself in
the first few weeks of pregnancy.  I know it seems as if I am
fishing for a solution but it has been nagging at me ever since.  O
kay, I will leave it at that for now because I already feel a bit
better just having asked.
Take care everyone
Jenny

--- In as_ap@..., "Lea" <leannec72@...> wrote:
>
> Hi everyone, I am sorry I seem to be posting up a storm this
> evening, can you tell my children are giving me a moments peace?
>
> I thought I might create a file with everyone's details on it,
> contact info, names of members, partners, children and important
> dates.  From that I think it'd be nice to get our calendar working
> and perhaps start getting some reminders about our special dates
> such as anniversaries & birthdays for our anen babies for example.
>
> Of course it won't be compulsory to give me the details, and you
> make pick and choose what info you do and don't want listed.  You
> can give me your phone and address so people can contact you, or
> just the basics.
>
> So, is anyone interested?
>
> If you are, please send me an email to leannec72@... ,
> entitle the email AS~AP DETAILS please.  You can create a word
> document or just send it as an email, either way I'm happy to put
> something together.
>
> Knowing each other's details makes keeping up a lot easier, and as
> you all become close friends you may find you want to perhaps send
> cards and things on special dates.
>
> Any suggestions of other things you'd like to see happening at the
> group would be greatly appreciated.
>
> Lea xxxxxx
>

Hi Everyone,

Firstly thank you to all for your personal stories and all the
information that is posted here.  My name is Lisa and my husband Pete
and I lost a baby in March this year at 14 weeks.  My husband signed
up to the group a while ago now but we have never posted anything...
what to say?  It has been helpful, sad, supportive, hopeful - so many
things - reading your stories.  I have shed many tears which i know is
not a bad thing.

Our baby, who we named Alice, would have been due tomorrow, so it has
been a tough week thinking how i might have otherwise been preparing
for  her birth.  I don't think i regret our decision to terminate the
pregnancy but sometimes i wonder.  It seemed to happen very fast, we
didn't really have to rush the decision but there didn't seem a great
deal of time either.

On the positive side of things we are blessed to have a 2 and half
year old beautiful daughter named Bridget, who is just a bundle of
joy.  I am 9 weeks pregnant, which is also wonderful and i think makes
this time when Alice was due a little easier.  Of course it is also
the worrying and stressful time waiting for that scan.  My optimism
and positivity seems to change almost day by day, it's impossible to
imagine going through this again, yet i know it's an unfortunate
possibility.

I must remind myself though that our life is pretty wonderful.  We
live in a beautiful place on the south coast of NSW and lead a pretty
relaxed lifestyle.  Pete and I are both teachers at the same school 5
minutes down the road, with me working 2 days a week.

Well, there it is, i did and it, and feel good that i finally have.  I
know Pete reads your posts as often as I do and will hopefully get on
here for a chat sometime soon too.

Kind wishes,
Lisa

Hi everyone, I am sorry I seem to be posting up a storm this
evening, can you tell my children are giving me a moments peace?

I thought I might create a file with everyone's details on it,
contact info, names of members, partners, children and important
dates.  From that I think it'd be nice to get our calendar working
and perhaps start getting some reminders about our special dates
such as anniversaries & birthdays for our anen babies for example.

Of course it won't be compulsory to give me the details, and you
make pick and choose what info you do and don't want listed.  You
can give me your phone and address so people can contact you, or
just the basics.

So, is anyone interested?

If you are, please send me an email to leannec72@... ,
entitle the email AS~AP DETAILS please.  You can create a word
document or just send it as an email, either way I'm happy to put
something together.

Knowing each other's details makes keeping up a lot easier, and as
you all become close friends you may find you want to perhaps send
cards and things on special dates.

Any suggestions of other things you'd like to see happening at the
group would be greatly appreciated.

Lea xxxxxx

Hey Tammie, I've come to give you a gentle poke *pokes Tammie less
than gently* to post some pics for the new man in your life!!!!

The birth of a rainbow baby is so special, I for one love to share in
the joy of subsequent babies coming along, it gives me a great sense
of hope....and I don't know anyone who deserves the happiness of
holding a beautiful healthy baby in their arms more than our AS~AP
members do you?

*more poking*

Hey you beautiful girls, did you manage to get together today?  I
was beaming when I saw you two were planning to meet in person.
That's just so special, that this group can start spreading out
into 'real life' (oh I know everything here is very real too my
friends) and real hugs can be felt between very special parents.

I also hope you got some pics!

--- In as_ap@..., Chris & Vanessa Murphy
<chrisandvanessamurphy@...> wrote:
>
> Absolutely! She is lovely.
> It certainly didn't fill me with any additional fears - like you
say, you want your doctors to be informed. And given my professional
interest in research in the area of pregnancy, I was keen to find
out more from the source!
> I am going to meet Pettina today - she sounded lovely on the phone
and it is great that we have this network of people who have been
through what we're going through.
> Vanessa
>
>
> --- On Wed, 27/8/08, Lea Coleman <leannec72@...> wrote:
>
> From: Lea Coleman <leannec72@...>
> Subject: Re: [as_ap] Re: Results from a worldwide Anecephaly
study - very interesting
> To: as_ap@...
> Received: Wednesday, 27 August, 2008, 9:15 PM
>
>
>
>
>
>
>
>
> Monika is just the most wondering and inspiring woman wouldn't you
agree, I have just got so much admiration for her!  How amazing is
her English!!!!  It never ceases to amaze me just how articulate
she is in a second (perhaps 3rd) language, she does better than many
from english speaking countries haaa.
>  
> I am glad you feel reassured after reading more........ ....the
effort she is putting in is to help mums like yourself to make
informed choices, I am sorry if reading the report filled you with
additional fears Vanessa, that wasn't the intention, instead it was
meant to give you some ideas to make decisions based on many
people's realities, not what your doctors read in a book or online
or heard at a convention!
>  
>  
> Lea xxxxxx
> Mum to Sage, Nara, angel baby ~Ben~ and rainbow baby Arden
> Give sorrow words; the grief that does not speak whispers the o'er-
fraught heart and bids it break.  ~William Shakespeare
>  
>
>
>
>
> ----- Original Message ----
> From: Chris & Vanessa Murphy <chrisandvanessamurp hy@yahoo. com.au>
> To: as_ap@yahoogroups. com.au
> Sent: Wednesday, 27 August, 2008 8:09:17 PM
> Subject: Re: [as_ap] Re: Results from a worldwide Anecephaly
study - very interesting
>
>
>
>
>
>
> Hi everyone,
> Further to our emails yesterday, I did contact the study author
and she very kindly wrote me a long reply. I thought I'd share it
with you - for those that might be interested in a bit more
info/explanation on the study results, here it is! If not, please
feel free to ignore! Some of my questions are inserted in the reply.
> I certainly feel somewhat reassured by getting some more
information from them about membrane rupture and still birth.
> Vanessa
>  
> Dear Vanessa,
> thank you very much for your interest about the report.
> I'm so sorry about the diagnsosis of your son and the hardship and
pain you are going trough :-(   What's his name?
>  
> I have a question about your finding regarding the risk of still
birth
> following artifical rupture of membranes. You indicate that there
was a
> higher risk of still birth after rupture, as opposed to
spontaneous rupture
> of membranes. I did not see much raw data or explanation for this
in the
> original publication, but it also seems that further data has been
collected
> since this time.
>  
>
> Yes, I continue to collect data and have now data about 418 babies.
>  
> I began to gather those data because too many times, when reading
the stories of other affected families, I came across misinformation
that the doctors had told the parents. You know, those doctors had
maybe seen one or two cases in their practice, read one or two
articles about anencephaly and because in those few cases it
happened like this or like that, for them it must always be like
that.
> Having read hundreds of stories and been in touch with as much
affected families, I could see that things were different. How many
parents had been told that their baby would die in utero and if not
had almost no chance to be born alive? The stories of the parents
showed that death in utero is rather an exception. So I began to
gather as much information about the birth of babies with
anencephaly as possible.
> I don't work in the medical field but before I became I stay at
home mom, I used to be a laboratory assistant (worked with plants
and their diseases). This work in the fundamental research taught me
some basics of statistics etc.
> When I had gathered data about ~ 150 babies, I contacted a Swiss
specialist for NTDs, Prof Eugen Boltshauser,  and he immediately
answered that this data should be published. As it was the first
publication of this kind about anencephaly, we decided to keep it
rather short and to emphasize on the fact that carrying to term can
be a good way for families, and what the expectations of life are. I
would have loved to go more into details, but Boltshauser felt it
would be better for a first try to keep it more general. As I have
no experience in publishing, I would not have been able to do this
alone, and the article would probably never have been accepted by
the BJOG without his support.
>  
> To answer your question, it may be the easiest if I give you the
current stats. Please excuse if there are English mistakes, I'm from
Switzerland and English is a foreign language for me. So if there
are things that are not clear, that I did not write well, please
feel free to ask. The texts on the site are proof-readed, but for
this mail I will just write as I can.
>  
> So, I have data about the birth and life of 418 babies. 29 (7 %)
of them died in utero during the pregnancy, before any labor or
induction.
>  
> This lets 389.
>  
> 127 among them had been born by c-section.
> 8 (7 %) were born still, but for 3 of them the c-section was only
performed after complication during labor, and 4 others had other
major birth defects.
> The reasons for the c-section were in a few cases medical reasons
like the position of the baby, twin pregnancy with the baby with
anencephaly presenting first, complications during labor, previous c-
sections,. .. .
> In most cases, the parents requested the c-section because they
wanted to have maximal chances that their baby survives his birth,
because they thought that a vaginal birth would be too much
psychological distress, or sometimes the doctors told them that a
baby with anencephaly could not be born vaginally (just one of many
misinformation that makes me so sad).
>  
> The other 262 were born by a vaginal birth.
> In 110 cases the amniotic bag was ruptured artificially, 34 (31%)
among them were stillborn.
> In the 152 cases were the bag ruptured by its own, 32 (21%) were
stillborn.
> The gap is not VERY big, but there is a significant difference.
>  
> I am wondering how you ascertain that the baby was still
> born and presumably died during the labour, as distinct from died
in utero
> prior to labour (question 11).
>  
> For most of the data, I not only get just the answers to the 14
questions on the report page, but the whole story of the pregnancy
and birth. So the distinction is easy to make. In case of a death in
utero, the parents get the sad news that their baby died in utero
and then go to the hospital to induce labor.
> Artificial rupture is not the standard induction. Usually, the
induction starts with some medication (in the US, they often use
pitocin). As you have read for sure, often the birth of a baby with
anencephaly doesn't start on itself. So parents chose to induce with
the help of some medication at a moment that they feel right. Many
parents dont want to wait 40 weeks or even longer, but induce
before. And even if many women who had given birth to healthy
children say that once labor starts, it's quite similar to the labor
and birth they had with their healthy children, induction sometimes
takes a LONG time before effective pains start and open the cervix.
It's a highly emotional time, for the parents, but also for the
medical staff. My opinion is that in such long inductions, the
medical staff wants to help the mother (or just make things going on
because they're tired themselves of the situation) and brake the
bag. Not because it would be really needed
>  from the medical point of view, but because they want things
going on.
> But this is just my opinion, and beeing that I always had very
quick labors and births (Anouk was my 4th child, I had her induced
at 40 weeks and once the pains started she was born within 30 min),
I'm not on the right place to "judge" anybody. If I could recommand
anything (but again, I have no medical training, just researched
anencephaly for over 8 years), I'd say to wait with the induction
until 40 weeks. This gives the baby time to gain weight, and gives
the mother's body more chances for beeing ready to give birth.
> I hope that I didn't give you too much information you didn't even
want. Just tried to explain the report.
> Please feel free to write me again whenever you want, to ask
further questions or just tell me about your journey with your son.
> If you're living in the US, please visit the website of "Now I lay
me down to sleep"  http://www.nowilaym edowntosleep. org  They
provide professional photographers who will come for free to provide
beautiful photography and videography services in a compassionate
and sensitive manner. They really do a great job.
>  
> Warm regards,
>
> Monika Jaquier
> http://www.anenceph alie-info. org
>  
> ----- Original Message ----- From: "Vanessa Murphy"
<vemurphy@gmail. com>
> To: <webmaster@anencepha lie-info. org>
> Sent: Monday, August 25, 2008 5:29 AM
> Subject: report_anencephaly
> - Hide quoted text -
>  
>
> I have read with great interest your article in the BJOG 2006 and
note with
> interest that information is still being collected from parents of
> anencephalic babies. I am currently 37 weeks pregnant with a baby
boy with
> anencephaly. I am also a medical researcher myself, also in the
field of
> pregnancy, and as a result sought out any published literature
that I could
> find on the topic. I will certainly be happy to email my answers
to your
> questions and participate in your survey after my baby is born.
> I have a question about your finding regarding the risk of still
birth
> following artifical rupture of membranes. You indicate that there
was a
> higher risk of still birth after rupture, as opposed to
spontaneous rupture
> of membranes. I did not see much raw data or explanation for this
in the
> original publication, but it also seems that further data has been
collected
> since this time. I am wondering how you ascertain that the baby
was still
> born and presumably died during the labour, as distinct from died
in utero
> prior to labour (question 11). My thought was that perhaps if the
baby had
> already died prior to labour, there was more reason for the
doctors to
> artifically rupture membranes to assist the birth to continue, and
that
> rather than the rupture causing the still birth, the prior death
was
> associated with more artificial rupturing.
> I would be interested in your take on this. As a mother, naturally
I hope
> and pray that my son will be born alive. I have yet to discuss
your finding
> with my obstetrician, but as I understand it, a standard induction
of labour
> involves artificial rupture of membranes as part of the process.
> Thanks for your time and your data collection.
> Vanessa Murphy
>
> --- On Mon, 25/8/08, Lea Coleman <leannec72@yahoo. com.au> wrote:
>
> From: Lea Coleman <leannec72@yahoo. com.au>
> Subject: Re: [as_ap] Re: Results from a worldwide Anecephaly
study - very interesting
> To: as_ap@yahoogroups. com.au
> Received: Monday, 25 August, 2008, 7:43 PM
>
>
>
>
>
>
> Ahh girls, I can understand the tears!  It was hard reading, but
so informative and honestly, if I am faced with questions from
someone about what to do I will draw on that info for their advice
for sure.
>  
> Vanessa, I was particularly keen to share it with you as you, I am
sorry if it has caused you concern that wasn't the intention of
course!  I think that knowing every statistic in the book doesn't
change what will be.......... ..but you have the information and can
discuss it further with your doctors if you so wish.
>  
> Liz, I think no matter what we choose during our anen pregnancies
we are all left with 'what ifs' in regards to the choices we didn't
make.  I often catch myself wondering how different my life may be
now if I'd taken the other options available to me.......... I have
very few regrets and choosing to carry on with my pregnancy isn't
one of them, but I can understand why others choose to say goodbye
to their darling babies earlier than I did. 
>  
> Again, I think the brilliant thing about this information is that
we can share it and use it to give counsel to others...... ....as
Liz so beautiful shows in her touching message, health care
professionals don't always give us as much information as we want or
need when it comes to the crunch.
>  
>  
>
>
>  
> Lea xxxxxx
> Mum to Sage, Nara, angel baby ~Ben~ and rainbow baby Arden
> Give sorrow words; the grief that does not speak whispers the o'er-
fraught heart and bids it break.  ~William Shakespeare
>  
>
>
>
>
> ----- Original Message ----
> From: Elizabeth <epsmith@bigpond. com>
> To: as_ap@yahoogroups. com.au
> Sent: Monday, 25 August, 2008 7:12:55 PM
> Subject: [as_ap] Re: Results from a worldwide Anecephaly study -
very interesting
>
> Like Tammie i read as much as i could before my eyes started
filling
> up with tears. As i didn't go to full term with Angela i didn't do
> the questionaire. I've been thinking alot lately about all of the
> regrets that i have when it comes to not going to full term. I
wish
> that the doctors had gave me so much more information than what
they
> did. I regret that i didn't get to see, cuddle or kiss Angela good
> bye but at the same time i don't think that i would have handled
it
> emotinally if i did go to full term with her. Its some thing that
i
> will never know the answer too. I don't know if it is because i am
> pregnant again and my hormones are up the wall but i haven't been
> able to get it out of my head for weeks now. Don't get me wrong, i
am
> so happy that we have another little man on the way but i still
can't
> get the "what if" out of my mind! Thanks Lea for finding this
link.
> As heartbreaking as it was to read all the information, it was
still
> helpfull.
>
> --- In as_ap@yahoogroups. com.au, Tammie Robertson
<abbey_april@ ...>
> wrote:
> >
> > I read as much as I could but the tears filled my eyes and
suddenly
> I could not see the page I was reading. It is just so sad I wish
> there was something we could do to help these babies. 
> >
> >
> >
> > ----- Original Message ----
> > From: Lea <leannec72@ .>
> > To: as_ap@yahoogroups. com.au
> > Sent: Sunday, 24 August, 2008 11:52:48 PM
> > Subject: [as_ap] Results from a worldwide Anecephaly study -
very
> interesting
> >
> >
> > Please take a peek at this link
> >
> > http://www.anenceph alie-info. org/e/report. php
> >
> > I would strongly recommend reading these findings, it's so
> > interesting, I participated in this study through the
Anencephaly
> Info
> > org (you can go to their main site from the link).
> >
> > I was fascinated to read the statistics regarding live birth of
> anen
> > babies depending on delivery choices for those who choose to
> continue
> > their pregnancies til term....it gave me goosebumps.
> >
> > there is also an opportunity to respond to the questionaire for
> anyone
> > interested.
> >
> > I hope you are all travelling well, my love and thoughts are
with
> each
> > of you always.
> >
> > Lea xxxxxx
> >
> >   
> >
> >
> >      Win a MacBook Air or iPod touch with Yahoo!7.
> http://au..docs. yahoo.com/ homepageset
> >
>
>
>
> ------------ --------- --------- ------
>
> Yahoo!7 Groups Links
>
>
>
>
>
>
> Win a MacBook Air or iPod touch with Yahoo!7- Find out more.
>
>
> Win a MacBook Air or iPod touch with Yahoo!7- Find out more.
>
>
> Win a MacBook Air or iPod touch with Yahoo!7- Find out more.
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>       Win a MacBook Air or iPod touch with Yahoo!7.
http://au.docs.yahoo.com/homepageset
>

I just thought I'd shout out to our members who, although having
joined us here, have never said hello.  Please come and let us get to
know you...promise we won't bite.

It's not always easy to come say hi to strangers, especially when you
are grieving, often the simplest things become terrifying, but we are
here to help each other through those tough times.

Lea xxxxxx

I'd like to welcome Maree to AS~AP, I'm so sorry you've had the need
to find us, but I'm so glad you did.  I hope our group can help you
as you grieve for your baby, Hope.

Please feel free to come and tell us about yourself and your family
when you are ready.

My name is Lea, one of the co-founders of the group (there are two
of us, the other is also Leigh), and amazingly we are both mums to
surviving twins who lost their sibling to anencephaly.

My twins ~Ben~ & Nara were born at 34w3d gestation on 8 June 06 at
Mater Mothers in Brisbane by emergency c-sect after I went into
spontaneous labour.  Nara is doing well, and I'm happy to report
that the rest of our family are too, because for a while there I
thought the sun would never shine for us again.

I am married to Alistair 36, we have an almost 10 year old daughter
Sage, Nara is now a lively (woah that's an understatement) 2 year
old and we have had a subsequent baby, our darling boy Arden 7
months....we live in far northern NSW.

I look forward to getting to know you.

Lea xxxxxx

Like Tammie i read as much as i could before my eyes started filling
up with tears. As i didn't go to full term with Angela i didn't do
the questionaire. I've been thinking alot lately about all of the
regrets that i have when it comes to not going to full term. I wish
that the doctors had gave me so much more information than what they
did. I regret that i didn't get to see, cuddle or kiss Angela good
bye but at the same time i don't think that i would have handled it
emotinally if i did go to full term with her. Its some thing that i
will never know the answer too. I don't know if it is because i am
pregnant again and my hormones are up the wall but i haven't been
able to get it out of my head for weeks now. Don't get me wrong, i am
so happy that we have another little man on the way but i still can't
get the "what if" out of my mind! Thanks Lea for finding this link.
As heartbreaking as it was to read all the information, it was still
helpfull.

--- In as_ap@..., Tammie Robertson <abbey_april@...>
wrote:
>
> I read as much as I could but the tears filled my eyes and suddenly
I could not see the page I was reading. It is just so sad I wish
there was something we could do to help these babies.
>
>
>
> ----- Original Message ----
> From: Lea <leannec72@...>
> To: as_ap@...
> Sent: Sunday, 24 August, 2008 11:52:48 PM
> Subject: [as_ap] Results from a worldwide Anecephaly study - very
interesting
>
>
> Please take a peek at this link
>
> http://www.anenceph alie-info. org/e/report. php
>
> I would strongly recommend reading these findings, it's so
> interesting, I participated in this study through the Anencephaly
Info
> org (you can go to their main site from the link).
>
> I was fascinated to read the statistics regarding live birth of
anen
> babies depending on delivery choices for those who choose to
continue
> their pregnancies til term....it gave me goosebumps.
>
> there is also an opportunity to respond to the questionaire for
anyone
> interested.
>
> I hope you are all travelling well, my love and thoughts are with
each
> of you always.
>
> Lea xxxxxx
>
>
>
>
>       Win a MacBook Air or iPod touch with Yahoo!7.
http://au..docs.yahoo.com/homepageset
>

Please take a peek at this link

http://www.anencephalie-info.org/e/report.php

I would strongly recommend reading these findings, it's so
interesting, I participated in this study through the Anencephaly Info
org (you can go to their main site from the link).

I was fascinated to read the statistics regarding live birth of anen
babies depending on delivery choices for those who choose to continue
their pregnancies til term....it gave me goosebumps.

there is also an opportunity to respond to the questionaire for anyone
interested.

I hope you are all travelling well, my love and thoughts are with each
of you always.

Lea xxxxxx

Lea
I have tried and tried to find the group by myself but been
unsuccessful. I followed your link but it does not give me any
options to try and ask permission to join. I have no idea what you
can do. I am so computer illiterate.

--- In as_ap@..., Lea Coleman <leannec72@...> wrote:
>
> Anencephaly Support ~ Australian Parents
> See if this link works http://www.facebook.com/group.php?
gid=21320059870
> It just doesn't make sense, I couldn't even invite my own husband
to the group, he won't show up on my list of friends when I try to
add people *sigh*
>  
> Lea xxxxxx
> Mum to Sage, Nara, angel baby ~Ben~ and rainbow baby Arden
> Give sorrow words; the grief that does not speak whispers the o'er-
fraught heart and bids it break.  ~William Shakespeare
>  
>
>
>
> ----- Original Message ----
> From: Tammie Robertson <abbey_april@...>
> To: as_ap@...
> Sent: Thursday, 21 August, 2008 11:06:42 PM
> Subject: Re: [as_ap] Facebook frustration
>
>
> What is the exact name of the facebook asap
>
>
>
> ----- Original Message ----
> From: Lea <leannec72@...>
> To: as_ap@...
> Sent: Thursday, 21 August, 2008 10:55:37 PM
> Subject: [as_ap] Facebook frustration
>
>
> Hi all
>
> Well I created the group, there are 2 members...myself and
Justine. I
> have tried to add those of you who I have on my friends list there
and
> when I select the invite friends function my list of friends isn't
> complete, meaning I can't add those who aren't there.
>
> Is anyone on here knowledgeable where facebook is concerned who
can
> explain this to me?
>
> Grrrrrrrrrr it should be easy, why isn't it easy? *frustrated
teeth
> clenched cackle*
>
>
> ________________________________
> Win a MacBook Air or iPod touch with Yahoo!7- Find out more.
>
>
>       Win a MacBook Air or iPod touch with Yahoo!7.
http://au.docs.yahoo.com/homepageset
>

Hi all

Well I created the group, there are 2 members...myself and Justine.  I
have tried to add those of you who I have on my friends list there and
when I select the invite friends function my list of friends isn't
complete, meaning I can't add those who aren't there.

Is anyone on here knowledgeable where facebook is concerned who can
explain this to me?

Grrrrrrrrrr it should be easy, why isn't it easy? *frustrated teeth
clenched cackle*

Sorry Vanessa i have not recieved your email. It is possible that i
gave you the wrong adress. I hope you get this soon so we can arrange
a meet.
try me on pettles8@... or pettinabeves@...