NiCKiDEE5206
Experienced User , Rather EHEALTHy
Joined: 31 Jan 2007
Posts: 207
Location: Port Saint Lucie, Florida
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Update From Ultrasound
Posted: 04-09-07 14:18pm
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For those of you who read what happened
during my 18 week ultrasound.
.I just got back from the specialist, and
he said there is definitely some defects
with the brain and the spine has a curve
towards the end. He says there might be a
cleft lip forming and the eyes are far
apart. He gave me a name that might fit in
with what the baby has, it's called
trisomy 13. I guess that means there is
multible abnormalities and from what he
seen, trisomy 13 best fits. I looked that
up and it says 80% of babies die their
first month being born. I had an amnio
done and I will get the results back in 7
days. So I will know exactly everything
what's going on.  I wish this never
happened to me. They said this can happen
to anyone. But why me?!
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Bridget
Moderator
Joined: 27 Jan 2006
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Posted: 04-09-07 14:22pm
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i'm so sorry, randee.
unfortunately i don't really have any
advice, but maybe you should try to find a
trisomy 13 forum so you can talk to other
women who have been through this.
we're all here for you.
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Willa Weintraub
Extremely EHEALTHy
Joined: 05 Mar 2007
Posts: 3399
Location: The Beach!
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Posted: 04-09-07 14:32pm
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i'm sorry,that is something horribleall I
can say is I hope things pull through and
you have a strong child.
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Mommy35
Extremely EHEALTHy
Joined: 23 Sep 2006
Posts: 3165
Location: Vacationland, USA,
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Posted: 04-09-07 14:46pm
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I'm really sorry the results were not
better. Maybe the amnio will prove
everyone wrong.
Good luck
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michelle1981
Supporter
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Location: Toronto, Canada
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Posted: 04-09-07 15:20pm
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| Mommy35
wrote: | I'm really sorry the results
were not better. Maybe the amnio will
prove everyone wrong.
Good luck |
I'll definitely be thinking positive for
you!
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ebarnhard33
Active User, Really EHEALTHy
Joined: 08 Nov 2006
Posts: 541
Location: Denver, CO
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Posted: 04-09-07 15:41pm
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I'm so sorry you got bad news .
Hopefully it isn't .trisomy 13, and the
amnio should pin-point exactly what it is.
Try to stay strong, and keep us updated.
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musikmaker
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Joined: 30 May 2006
Posts: 1743
Location: Chicago, US
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online
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Posted: 04-09-07 16:23pm
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The doctors told my aunt that my cousin
positively had trisomy 13 but a year later
my cousin is beautiful! They said that
they could see it all in the u/s and that
the tests came back that she had it.
Doctors can be wrong but definately get
educated on the matter. I hope that it all
works out for you.
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mommyto3soontobe4boys
Experienced User , Rather EHEALTHy
Joined: 10 Feb 2007
Posts: 185
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Posted: 04-09-07 17:21pm
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I am sorry to hear this, however as
previously stated doctors can be wrong.
When I was pregnant with my first son I
had a level 2 ultrasound done and the dr's
were trying to convince me that my son
would have sever mental retardation
because he had extra skin on the back of
his neck and they wanted me to consider an
abortion. I would not listen to them and I
told them that it did not matter because
no matter what he was still my son and I
would love him for who he was no matter
how short or long a period of time I would
have with him. After he was born he still
had the extra skin on his neck but it was
because he was a big baby not because he
had severe mental retardation. He does
have a mild learning disorder but it is
believed to be caused by ADHD. So I would
like to wish you the best of luck and tell
you to enjoy what ever the time may be
that you have with your little one.
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hopefulmjz
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Posted: 04-09-07 21:44pm
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I'm very sorry you got bad news. I wish
things could have went better for you. But
as the others said, doctors aren't perfect
and they can be wrong too. Lets hope
that's the case here. I hope the amnio
gives them a little better understanding
as to what's going on. PM me if you ever
need to talk. I don't know anything about
the syndrome, but I do know how to listen.
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NiCKiDEE5206
Experienced User , Rather EHEALTHy
Joined: 31 Jan 2007
Posts: 207
Location: Port Saint Lucie, Florida
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Posted: 04-09-07 23:21pm
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| hopefulmjz
wrote: | | I'm very sorry you got bad
news. I wish things could have went better
for you. But as the others said, doctors
aren't perfect and they can be wrong too.
Lets hope that's the case here. I hope the
amnio gives them a little better
understanding as to what's going on. PM me
if you ever need to talk. I don't know
anything about the syndrome, but I do know
how to listen. |
Well, the specialist who was looking at
the ultrasound said the baby will
definitely have some abnormalities with
the brain but as far as everything else he
had seen, he will wait until the amnio
comes back to know for sure what's wrong.
But if there will be some problems with
the baby's brain, does that mean people
will look at him differently? Will he look
like something is wrong or will he look
like a normal baby? Because I don't know
if baby's who have that disability, look
like something is wrong or look normal.
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ladylee70
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Posts: 1912
Location: Boise, Idaho,
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Posted: 04-10-07 00:26am
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It sounds like there maybe multiple
problems and it's difficult and perhaps
even dangerous for us to even speculate or
try to answer your question. Your question
is just so difficult to answer. There are
a number of conditions where you would be
able to see that there is something wrong
if it's with the brain such as severe
hydrocephalus (before treatment with a
shunt if too severe). There are also a
number of conditions where you wouldn't be
able to tell just by looking at an
individual. Let's take Mild Mental
Retardation, Learning Disability, or
Attention Deficit Hyperactivity Disorder
as examples. With the majority of people
who have been dx with MIMR, LD, or ADHD,
you are unable to tell just by looking at
the person that they have it. Their brains
are just wired differently. A lot of the
syndromes, however, do have certain
physical indicators such as Trisomy 13.
You stated that the doctor did say that
the eyes are a little wide apart and the
baby possibly might be developing a cleft
lip. Those are indicators that the baby
may look a bit different. The doctor is
able to see the ventricles on the
ultrasound and other parts of the brain
and can tell what doesn't look quite
right. The doctor probably doesn't want to
say too much until the tests come back.
With that said, I would listen to other
people on this thread. It sounds like
their are other people who have
experienced doctors telling them some bad
news and their babies turned out alright.
Your questions are just so difficult for
us to answer. Basically my answer to you
is that we just don't know. Even if your
baby was born with Trisomy 13, we don't
know the outcome for your little one. If
it were Trisomy, your baby would show some
physical indicators that are typical with
the syndrome. Every situation, every baby
is just so unique on how syndromes,
disabilities, etc. manifests themselves.
I diagnose and work with individuals who
have various types of disabilities and no
two kids are alike. There are certain
"hallmark" characteristics with each
disability but no two manifest in exactly
the same way. They are all very unique.
During this process, you will have many
questions that we can't answer and that is
completely understandable. People have
provided such great encouragement to you.
We are hear with you through this journey.
I can't imagine how hard everything is for
you right now. Hang in there as much as
you can. Please continue to keep us
updated.
I will be praying for you, your family and
your baby!
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Kia
Supporter
Joined: 23 Jun 2004
Posts: 6594
Location: Planet Tampaxia,
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Posted: 04-12-07 04:34am
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before you make your choice - I hope you
are fully informed on this condition.
Not all children with trisomy 13 die in
the first month
http://www.livingwithtrisomy
13.org/
there are some on there 19 and 22 years
old.
Also you realise that you must have
genetic counselling because trisomy 13
isn't a one off occurence.
If this is what your child genuinely has
then potentially every subsequent
pregnancy will also be affected by trisomy
13.
It is possible to acheive a normal
pregnancy but this will require the
assistance of a qualified genetic
counsellor and endocrinologist.
another helpful site to help you make an
informed decision is
http://www.trisomy.org/index.ph
p
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ThriftyGal
Extremely EHEALTHy
Joined: 21 Apr 2006
Posts: 2982
Location: Ontario, Canada
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Posted: 04-12-07 06:56am
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I am so sorry you got this news. It's
hard to understand why these things
happen. I'm sure none of us can imagine.
Look at the website .Kia posted. I looked
through it and those kids are beautiful
and completely lovable. look at this
little boy, http://www.livin
gwithtrisomy13.org/album11.htm, so
freaken cute! I just want to hug him!
It's happened before where dr's say a
child will be born with abnormalities, and
encourage abortion, and are completely
wrong once the child is actually born.
Even if the dr's are right, seriously,
some of the sweetest most loving people
are "disabled".
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onmyway_0x
Supporter
Joined: 12 Jan 2007
Posts: 759
Location: Canada
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Posted: 04-12-07 10:13am
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I am so sorry to hear your news darling!
I really don't have much to say except for
I wish you the best of luck with
everything, whatever the outcome.
If you ever need anyone to talk to I'm
here and I'm sure just about everyone else
is willing to lend an ear as well.
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Sunflower_pie81
Especially EHEALTHy
Joined: 17 Jan 2006
Posts: 5041
Location: to hell with this crap
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Posted: 04-12-07 10:15am
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She is having labor induced on friday.
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Willa Weintraub
Extremely EHEALTHy
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Posts: 3399
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Posted: 04-12-07 10:42am
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| Sunflower_pie81
wrote: | | She is having labor induced
on friday. |
huh?!?! how do you know?
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Bridget
Moderator
Joined: 27 Jan 2006
Posts: 10769
Location: ,
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Posted: 04-12-07 10:49am
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| Sunflower_pie81
wrote: | | She is having labor induced
on friday. |
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Willa Weintraub
Extremely EHEALTHy
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Posted: 04-12-07 10:52am
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that really *really* sucks.this happened
for a reason.
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ebarnhard33
Active User, Really EHEALTHy
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Posted: 04-12-07 11:22am
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She posted in the medical abortion forum,
and apparently she was told that the baby
has no chances for a decent quality of
life. I know this must be hard for her.
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lil_blaze2004
Supporter
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Posted: 04-12-07 12:08pm
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yes, she's being induced tomorrow. I
talked to her through some pm's.
Man I can't even look at that site you
posted kia. It makes me cry and thank my
blessings trey came out healthy. I don't
know what I would do in a situation like
nickie's.
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