[tri-med] Re: TRISOMY 17

Hello Theresa,

I'm afraid I'm not any help with Trisomy 17 information or the medical
issues you described, but I wanted to tell you that this is a good place to
be for help, encouragement and information.  While our children have
different "flavors" of Trisomy, they share many medical issues and someone
usually has information to help.

As you've found out, information about Trisomy in general is scarce and what
does exist is not very encouraging.  Unfortunately, the statistics don't
lie, but there are children who defy the odds.  Each child is different,
just like any "normal" person.

I, too, had a prenatal diagnosis so I know right now you're feeling
overwhelmed.  No one knows for sure what will happen, and that uncertainty
is difficult to live with.  I'm sure you found the SOFT website,
www.trisomy.org.  They have literature in general, and may have more
information about Trisomy 17 specifically that is not listed on their
website.

My daughter, Anna, lived for almost 3 months, and, needless to say, it was a
very life-changing experience.  This list helped me along the way.  Keep
asking questions and someone will eventually chime in.

Good luck, and take care of yourself and the precious life you are carrying.

Ceci, mom to angel Anna, T-18, 9/22/98 - 12/13/98, Maria, age 25 and on her
own, Joe, 13 years old and wife to John.

----Original Message----

From: "Lace4Blitz" <Lace4Blitz@xxxxxxxxxxx>
Subject: [tri-med] TRISOMY 17
Date: Mon, 26 May 2008 20:33:42 -0400

Hello,
   I am a 36 year old women who is currently 20 weeks pregnant. After
receiving an amnio I have since found out this baby has full Trisomy 17. The
lab has tested all available cells they had and each and every cell has the
extra 17th chromosome. I have been told by this hospital they have never had
a single case of this. They also said they have not heard of a case where
the baby has lived to 20 weeks. In addition the level 2 ultrasound showed
heart problems, club foot, and problems with the back of the brain, and a 2
vessel cord.

After searching the internet I can not find much information on this
problem.

I am interested to know if any hospital or research facility has any
additional information and can any additional research be done to maybe
learn more about this, possibly to help someone else down the road. I thank
you in advance for any help you may provide.

Theresa

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

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