[tri-med] Re: New to list-please help

Lisa,
I'm glad you found the list-sorry you had to seek us out. You are in a very
difficult situation. Let me just tell you a little bit about our situation.
I really try and stay in the "middle" of the termination debate--you have t=
o
do whatever you feel is right for you and what is right for you may not be
right for the next person. Now as for us.....
We did not have a pre-diagnosis before Mitchell was born, so all of this wa=
s
a big surprise when he was born. Mitchell was born w/a cleft lip and palate=
.
He was later dx with trisomy 13 mosaic. (a day or 2 after he was born) Has
this life been tough--for sure. But, I can honestly say that I don't know
where my life would be without Mitchell. He will be 2 years old in December=
.
Please please go to our website and just look at him, you can read our
journal history as well to get a "feel" of what those first couple
weeks/months were like. I'm not going to lie--that first week finding out
the dx. It really was horrible. The first year was extremely tough but all =
I
had to do was take one look at Mitchell's smiling face and I'd do it all
over again in a heartbeat. He comes with challenges, mainly medical but at
this point I feel we have them under control and he (and we) live a fairly
"normal" life. (whatever that is)
Also, have you been to the "living with trisomy 13" website? There are
numerous children "living" with trisomy 13....I believe many of the parents
say the same thing. I can't describe how Mitchell is different personality
wise from a typical child. He really is magical-I really enjoy watching how
the medical community lights up when they see him..I guess magical is the
word. He has a way of making them work for him. :) I could go on and on.
You have to reach down in your heart and feel what is best for you and your
family. But please look at the living w/trisomy site as well as check out
Mitchell's caringbridge site. We just put a video of Mitchell walking
talking and laughing on the living w/trisomy 13 site-go to the video and
presentation section and select Mitchell. Take caare of yourself, I will be
thinking of you.=20
Katie Mom to Mitchell t13 mosaic

Www.caringbridge.org/mn/mitchelljohncragg

Www.livingwithtrisomy13.org




On 10/29/06 9:16 AM, "lisa potash" <lpotash@xxxxxxxxxxx> wrote:

> Hi- We just found out at 17 1=8E2 weeks that our baby is positive after cvs=
 and
> amnio for trisomy 13 mosaic. We are at Northwestern which is supposed to =
be
> the best around.  The doctors there and genetic counselors/ob=B9s-pretty mu=
ch
> everyone we have talked to encourages termination.  I haven=B9t found anyth=
ing
> on the web either that is helping to make our decision to proceed. We are
> planning to wait the two weeks until the culture grows and have another
> ultrasound but are told to expect confirmation only.  Our 17 week ultraso=
und
> showed nothing which they tell us means the bad cells are probably intern=
al
> which is worse. The mosaic part makes it even harder since they say it ma=
sks
> the issues and sometimes prolongs them.  As of today, I don=B9t feel it is
> fair to try to have this baby born to just have it suffer and pass away s=
o
> quickly. I am also afraid what effect that will have on the rest of our
> family.  They tell us that mental retardation is almost a definite so it
> doesn=B9t sound like the baby would even know it was here.  The docs say I =
may
> make it to term since it is mosaic.
> Any advice if you have a trisomy 13-mosaic? I am finding that it does mat=
ter
> if it is 13 and if it is mosaic.  Also, any other doctors/hosp that you
> would recommend? I did get a second opinion from Evanston and it was the
> same.
>=20
> Thanks
>=20
>=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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