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spinabifidacentral · Spina Bifida Central -A Place To Find Support And Share Experiences
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Reply | Forward Message #1825 of 8113 |
Re: [Spina Bifida Central] New and need help

Hi,
I hope this repply is not to late.
I have 3 years old daughter that have spinabifida, I think your son just
experience something very similar to me, even the time when the doctor told him
( 20 weeks ) and also the doctor suggestion to terminate the pragnancy.
The fist time we heard that news, its like a hammer that bring me down, and
letter on, we start to think about what is the best for our baby, our financial
etc.
Please.. please ask your Son to email me in private, I am sure I can give a
lot of input for them.


Edy
zinhua@...

silverleaf003 <silverleaf003@...> wrote:
Hi, I am looking for any help ,opions,and experience any one can
offer. My son and his fiancee found out on Thursday they are carying a
baby with Spina Bifida. They and our family are devastated, and are
trying to make the best choice for their baby. The doctors are
recomending terminating the pregnancy and they only have till Wed. to
decide as she is in her 20 th week. Please share any info you can
about the quality of life for this child. Thank you, Lisa





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Wed Jun 7, 2006 11:48 am

zinhua
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Message #1825 of 8113 |
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I'd like to also add something to this impending (I HOPE NOT) tragedy.......nobody ever knows the accomplishments that a child with spina bifida can work out...
anton19542001
Offline Send Email
Jun 7, 2006
11:40 am

Hi, I hope this repply is not to late. I have 3 years old daughter that have spinabifida, I think your son just experience something very similar to me, even...
edy yusman
zinhua
Offline Send Email
Jun 7, 2006
11:48 am

I have 2 adopted daughters with SB and am trying to adopt another one now. My girls are both paralyzed from the top of the legs down but have no difference in...
Cindy Hawk
mom2sbdaughters
Offline Send Email
Jun 7, 2006
12:29 pm

Hi,I have a 20 year old grandson born with spina bifida,he has never walked,never run,but he has and still is a joy to my heart.His name is William,he has had...
sheila weaver
bad_girl56_3...
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Jun 7, 2006
1:15 pm

The doctors can tell you that a child is going to have Spina Bifida, but not to what extent. When I was born 38 years ago, my parents were told I would...
Switchbrdopr@...
caspersmom20112
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Jun 7, 2006
2:32 pm

Others have explain about a lot about having spinabifida family is fine, so I won't add more story there, for me there is one more aspect that stress me a lot,...
edy yusman
zinhua
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Jun 7, 2006
3:36 pm

Lisa, I am a grandmother to Makenna Rose w/SB...www.MakennaRose.org , her pictures after birth speak more than words. Makenna or as I like to call her, Rosebud...
Marsha Lee
marshamae3
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Jun 7, 2006
3:28 pm

Marsha not sure, I love your story, but I think you meant to send it to silverleaf.. but I will check your granddaughter out and I know know exactly what you...
Lisa Kay Edmison
momofdevin
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Jun 7, 2006
3:34 pm

The doctors at UCSF were able to tell us where the lesion was located and even before birth the outcome...which has been pretty accurate. We love the doctors....
Marsha Lee
marshamae3
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Jun 7, 2006
4:14 pm

I recommend they visit http://www.sbaa-communities.org/yaa/...
Sara Hartman
karma_rose_1
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Jun 7, 2006
4:26 pm

Well, the doctors told my husband & I the same thing about 4 years ago. Today, Logan is a healthy (almost) 4 year old! Nobody even knows he was born with...
Mandy Insley
mandyka76
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Jun 7, 2006
10:01 pm

Erma Bombeck says it best with a poem about how God picks Mom's for disabled children..... THESE MOMS SHARE SPECIAL GIFTS by Erma Bombeck (published...
Magi Karkosky
magisnow
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Jun 7, 2006
10:10 pm

National Institute of Neurological Disorders and Stroke Doctors have recently begun performing fetal surgery for treatment of myelomeningocele. Fetal...
Ashley Kersh-Fletcher
swenknet
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Jun 7, 2006
10:19 pm

hey Ashley! Thanks for that AWESOME info! Has anyone heard of a boy named Sam Aramas? I got pictures e-mailed to me from someone ( I dont remember who) of him...
leanne conzemius
leanneconz
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Jun 7, 2006
10:27 pm

www.MichaelClancy.com Michael Clancy the photojournalist who took the picture of Samual during in-utero surgery. The photo shown on the cover of Life...
Marsha Lee
marshamae3
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Jun 7, 2006
10:59 pm

I had forgotten that I was registered with this group. LOL Now it's bogging down my email! LOL I don't have sb myself but am a parent of a son with sb. I want...
Ashley Kersh-Fletcher
swenknet
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Jun 7, 2006
11:47 pm

Also, if you live near Philadelphia, PA, there's a wonderful place you can go to see if your son's fiancee is a candidate for the inutero surgery to correct...
Mandy Insley
mandyka76
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Jun 7, 2006
10:08 pm

I just wanted to add to this post that you cannot reverse spina bifida. It is a neural tube defect. I've read much information about this procedure and it is...
Ashley Kersh-Fletcher
swenknet
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Jun 7, 2006
10:11 pm

you are awesome ashley...thank you for adding that!!!! It's also an incredibly dangerous for both mother and unborn child. Ashley Kersh-Fletcher...
cari minsky
carester2002
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Jun 7, 2006
11:34 pm

Actually the healthiest I have ever been was when I was pregnant. The nine months flew bye. My oldest Cyerra was born natural. And my littlest Madison was...
Ashley Fraley
ashleylfraley
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Jun 8, 2006
1:24 am

My step daughter was born with spina bifada and they said the same thing. She is 10, in the 4th grade, walks with braces and enjoys most but not all the same...
Rachel Hayes
rachelhayes1110
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Jun 11, 2006
2:12 am

... a ... Hi all.... I haven't posted on here in a while but sometimes something catches your eye and you feel the need to respond...I am 30 years old and I ...
Gina
imajcfan26
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Jun 11, 2006
4:25 am

to Silverleaf............. the bottom line is, DONT LISTEN TO DOCTORS when it comes to SB! They THINK they know, but they DONT KNOW. There is so much that can...
anton19542001
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Jun 11, 2006
1:23 pm

... carying ... are ... Wed. to ... there ... dr's ... I ... real ... fortunate ... of ... would ... person ... a ... the ... April ... I ... seem ... alone! ...
azreal19792002
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Jun 13, 2006
6:02 am

Good Morning, I am just catching up on email and I would like to offer my experience...i'm 35 now with SB...In 1971 (when I was born), where I live, very...
Paula Walker
sweet_p0030
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Jun 11, 2006
2:01 pm
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