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

Wow, Lisa, you've received an incredible amount of responses to your post.
In my opinion, you and your husband will make the right decision, because it
is obvious that you love your baby.  Otherwise, why would you be spending
time searching the Internet for answers?

I had a prenatal diagnosis of full Trisomy 18 for my daughter Anna.  And, as
the others who have responded, my first set of doctors very strongly urged
termination.  My OB even said that even the Catholic Church, of which I am a
member, would say it was okay to terminate, because I would be putting her
"out of her suffering".  (This, by the way, is not true.) He told me I would
find no doctors to treat Anna, because nobody would think her life was worth
it.  The problem is, my husband and I thought her life was worth it.  We
decided that we did not know for sure what was going to happen and to leave
it in God's hands.  We found this list, which was a fantastic source of
truthful information.  Nobody with surviving children said there life was
easy, and they did not deny the statistics about the chances for our
daughter.  But, they offered a support system to help us get through our
pregnancy and deal with the situations that came up with Anna.

In our situation, my husband had already accepted a job in another state
when we got the diagnosis.  I was worried about finding an OB that would
support my decision in my new home, and a neighbor got me in contact with
the Right to Life office there.  They have lists of doctors that support
their cause. They referred us to the most wonderful doctor in the world, one
who respected and encouraged our decision to let Anna reach whatever
potential she had, whether it be 20 minutes or 20 years.  Through him, we
were able to find pediatricians, and other specialists that helped us
through her birth and her few short months with her.  My original OB was
wrong.  I did find doctors to treat Anna...I just had to look a little
harder.

Anna lived 81 days.  I will not lie, it was incredibly difficult.  Worry,
sleep deprivation, doctors' appointments, more worry.  But, I cannot
describe the outpouring of love we received during that time.  When she
died, many of her therapists, doctors, nurses, etc. wrote us that they were
so glad they had been a part of her life.  I think one of the strongest
testimonies came from my husband's sister-in-law, (one who is fairly
opinionated and has always made sure she took care of herself!)  She said,
"You know, when I first heard about Anna, I thought you guys were wrong not
to terminate the pregnancy.  But, after seeing how much love she brought
with her, I have to tell you that I was wrong.  You did the right thing."
The hardest thing I've ever had to endure is not having given birth to her,
it's losing her.

I agree with so many others who have posted.  Take some time to let the
initial shock and grief subside.  Make sure you understand completely the
information you have been given.  Have you had a Level 2 ultrasound?  That
may give you a better picture of some of the issues your baby is facing.
But, remember that prenatal diagnostics can make an incredible number of
mistakes.  You can't know for sure until birth what challenges lie ahead.
Most likely, your CVS diagnosis is correct, but there is a chance it is
wrong, especially since they aren't seeing anything through ultrasound.
Continue your search, discuss with your husband and others close to you.

I will pray for you and your husband.  My heart aches for you, because
although it was 8 years ago, the pain and grief of that diagnosis is still
strong.  Please keep in touch.

Take care.
Ceci, mom to angel Anna, T-18, 9/22/98 - 12/13/98, Maria, age 23 and on her
own, Joe, 12 years old and wife to John.

----Original Message----
From: "lisa potash" <lpotash@xxxxxxxxxxx>
Subject: [tri-med] New to list-please help
Date: Sun, 29 Oct 2006 09:16:40 -0600

Hi- We just found out at 17 ½ 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?s-pretty much
everyone we have talked to encourages termination.  I haven?t found anything
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 ultrasound
showed nothing which they tell us means the bad cells are probably internal
which is worse. The mosaic part makes it even harder since they say it masks
the issues and sometimes prolongs them.  As of today, I don?t feel it is
fair to try to have this baby born to just have it suffer and pass away so
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?t 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 matter
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.

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

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