[tri-med] Re: Bonnie- a twin family contact for support

That=B9s the story with these kids
All the texts book tell of these trisomy kids being "Not compatible with
life"
When you find out prenatal you are told,
-they shouldn't make it to term, (so lets help it along)
When they do arrive, you are told,
_they shouldn't have made it to term, and they won't live long, ( so there
is not point in doing anything to prolong the life)

You have stepped into a new role...like it or not, You as a parent need to
become your childs best Advocate....not a difficult role, but a new one and
you will need to learn many things...to stay on top of what is needed for
your child...Never be afraid to ask questions...and if you don't like what
you hear, ask for a second opinion...I love second opinions...and sometimes
a third....
But they really don't know how each one of these kids will do .....

With loving parents, Doctors willing to go the extra mile, you can see some
of these kids do fairly well...and every family here would probably say the=
y
would do it all  over again...

ThereseAnn mom to Natalia
http://www.pray4natalia.com



On 1/28/06 4:56 AM, "Irene Smith" <67.irene@xxxxxxxxx> wrote:

> OOPS, I just re-read my email....Caroline was NOT expected to make it to
> term.
> A little early here for me after being up too many times with my little o=
nes
> last night!
>=20
>=20
>=20
> On 1/28/06, Irene Smith <67.irene@xxxxxxxxx> wrote:
>>=20
>> Bonnie,
>>=20
>> Welcome to the list.  This list is a Godsend.  I can't say enough about
>> it.
>>=20
>> My second daughter Caroline (I have 3 daughters) has a rare chromosome
>> disorder, a partial trisomy 17p.  There are no other 17s on the list (th=
at I
>> have ever heard of) but my daughters issues are VERY similar to those of=
 T13
>> and 18.  She was diagnosed via an amnio and was expected to make it to
>> term.  She is now 2 1/2.  She is very delayed, she is tube fed, she does=
n't
>> walk or talk, but she isn't even close to being the "vegetable" the expe=
rts
>> claimed she would be.  Our first year with Caroline was a little tough, =
but
>> things have calmed down a lot.  It is still hard sometimes, since I also
>> have a 7 mo now, but life isn't nearly as "miserable" as everyone made m=
e
>> feel it would be.
>>=20
>> I live in a small town in Western PA, about an hour south of Erie.  I gr=
ew
>> up in Erie and still visit my family there about once a week.  What part=
 of
>> Western NY are you in?  Since Erie is on the border of NY, I was just
>> curious how close you may be.  I would love to be able to help you in an=
y
>> way I can.  I am also 38 (almost 39) and know what it feels to be consid=
ered
>> "of advanced maternal age" (haha, I hate that term).
>>=20
>> Please take care and congratulations on your twins!!!!!!!!!!!
>>=20
>> Irene
>> Christina (4), Caroline (2 with partial trisomy 17p) and Kallie (born
>> 6/23/05)
>> Caroline's site:  http://www.caringbridge.org/visit/carolinesmith
>>=20
>> On 1/28/06, Bonnie Klein <bsklein@xxxxxxxxxxxx> wrote:
>>>=20
>>> Hi Everyone
>>>=20
>>> Thanks for all your concerns and prayers.  I can not sleep this
>>> morning.  I live in Western New York state.  It is only 6:45 am.  So fa=
r the
>>> only risks of carry both - which is what I think I want to do- is prema=
ture
>>> labor.  I am already at risk for that due to the fact my 22 mo old went=
 6
>>> weeks early and now twins.  The specialist that I am seeing due to twin=
s and
>>> my age --ha ha 39---- said to me wouldn't you be upset with yourself if=
 you
>>> lost twin A because you did not terminate twin B and they were born at =
29
>>> weeks... So far everything looks fine with twin A.  I did get an apt to=
 see
>>> a DR in NY city on Tuesday for an ultrasound and consult.  I guess havi=
ng
>>> the twins makes it a harder decision for me.  I do not want to end up l=
osing
>>> both as I tried for children for a long time and it just didn't happend=
 and
>>> now I do have one beautiful little girl and hopefully two more..
>>>=20
>>> Bonnie
>>>=20
>>> -----Original Message-----
>>>> From: David & Tracey Pass <pass@xxxxxxxxxxxxx>
>>>> Sent: Jan 27, 2006 6:23 PM
>>>> To: tri-med@xxxxxxxxxxxxx
>>>> Subject: [tri-med] Re: Bonnie- a twin family contact for support
>>>>=20
>>>> Bonnie,
>>>> You stick to your guns!!  Have they given you the risk ratios for
>>> selective
>>>> termination?  You may just lose your other precious one too.  They can
>>> do
>>>> serial USS to make sure that both babies remain 'viable'.  It's up to
>>> YOU
>>>> don't let them bully you.  I'm sure it must be hard for you (we didn't
>>> have
>>>> prenatal diagnosis so we didn't have these fights) but if you want to
>>>> continue then tell them so and don't let them make the decisions for
>>> you.  I
>>>> wish I could be there for you what part of the US are you in?  Maybe a
>>> list
>>>> member could meet up with you somewhere???
>>>>=20
>>>> Don't worry about the world coming to an end tomorrow it's already
>>> tomorrow
>>>> in Australia
>>>> Charles Schultz
>>>>=20
>>>> "Life is like a box of chocolates you never know what you're gonna
>>> get!"
>>>> Forrest Gump's mother.
>>>>=20
>>>> Tracey, <///>< RM/RN Mum to Jenny (18) currently wandering in the
>>>> 'wilderness', Louise T18 (in heaven since July 1990), Jono (14), Jesse
>>> (12),
>>>> Jimmy & Pippa angel dogs, Millie (our faithful girl) and wife to David
>>> my
>>>> soulmate & best friend for 26 years now!!! :O))
>>>>=20
>>>> <///><><///><///><><///><///><><///><///><><///><///><><///>
>>>>=20
>>>> OUR GOD REIGNS
>>>>=20
>>>> homepages - www.geocities.com/cuddlefishtoo/index.html
>>>>=20
>>>>=20
>>>>                  Building ___ooOOoo__ Rainbows
>>>>                       www.trisomyonline.org
>>>>                  Families Helping Families On-line
>>>>=20
>>>=20
>>>=20
>>> ________________________________________
>>> PeoplePC Online
>>> A better way to Internet
>>> http://www.peoplepc.com
>>>                  Building ___ooOOoo__ Rainbows
>>>                       www.trisomyonline.org
>>>                  Families Helping Families On-line
>>>=20
>>>=20
>>=20
>>=20
>> --
>>=20
>=20
>=20
>=20
> --
> Irene
> Christina (4), Caroline (2 with partial trisomy 17p) and Kallie (born
> 6/23/05)
> Caroline's site:  http://www.caringbridge.org/visit/carolinesmith
>=20
>                 Building ___ooOOoo__ Rainbows
>                      www.trisomyonline.org
>                 Families Helping Families On-line
>=20

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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