[tri-wings] Re: TRISOMY 17 BABY MICHAEL.......MISDIAGNOSED

((((((((((((((Theresa))))))))))))))))))

My heart so goes out to you! And I am so mad about the misdiagnosis and the
fail to treat.  When Rebecca was born it was before wide spread internet
access and I had no knowledge of T18..........they told me she would die and
as a nurse I accepted the Dr's prognosis.....................later as I
became more educated ( after the internet became more available ) I realized
that there was more.  We never pushed on the heart surgery that was never
offered and she was happy and healthful for her, 

 but after Rebecca died and I learned how bad her heart was I wished I had
pushed...............





Susan Mom to Rebecca T18 M 6/6/91-5/2/06 and Mark ADD/LD age 16


-----Original Message-----
From: tri-wings-bounce@xxxxxxxxxxxxx [mailto:tri-wings-bounce@xxxxxxxxxxxxx]
On Behalf Of Lace4Blitz
Sent: Wednesday, October 08, 2008 11:10 PM
To: tri-wings@xxxxxxxxxxxxx
Subject: [tri-wings] TRISOMY 17 BABY MICHAEL.......MISDIAGNOSED

I had to respond to your email below.......I had the Trisomy 17 baby. The 
doctors almost pushed me into aborting this pregnancy. Ultrasound showed 
major organ problems including a heart that was not repairable among other 
major organ problems. I was given the incompatible with life speach they
like to give. I asked the doctor incompatibale with whos life yours or mine.

She did not know what to say. I wanted to smack her she made me so mad. I 
did weeks of internet research on Trisomy itself.

17 is so rare (23 cases)there was very little info avaliable to us. Then I 
came across a story of another woman who was in pretty much the same 
situation as mine except it was a different Trisomy. She was given the same 
prognosis. She opted to carry the pregnancy to term. Her story stated if she

had it to do over again she would not have done anything different as she 
stated a few hours with
her child was better then none at all. After I read her story I cried so
hard. I was so sad for her.

That story changed my whole way of thinking and I too decided to carry my 
son to term against what all the doctors had advised me to do. He was born 
on my husbands birthday 9-9-08 and he lived for 9 days. They were the best 9

days of my life. If I had it to do over
again I would not have changed a thing either....cause 9 days with my
Michael was better then no days at all. At least we got to tell him how much
we loved him and we got to hold him.

This country is so hell bent on abortion laws and right to life yet doctors
are so eagar to take life away when it is not a perfect life. When I saw my
son for the first time I did not see anomalies...I saw a little baby boy who
was just cute as a button and eagar to be loved. Perfect to me but not to
the medical profession. Like they (doctors)are so perfect anyway. Right?

So because they (trisomy babies) are not perfect they dont deserve a chance?
Bull I say I would have loved him and cared for him anyway...anomolies or
not. That is my right as his mother. NOT some so called doctors opinion.
These so called medical professionals should take a walk in our shoes just
once and lets see what answers they have this time around.

I found a story about a lady who had an amnio. Came back Trisomy and
incompadible with life. She opted to abort. The autopsy came back and the
results showed the baby was perfectly healthy. Now how do you cope with
that? These amnio tests are NOT 100% reliable and are we taking away
innocent lives?

My son who passed away on 9-18-08 had chromosome blood tests done after he 
was born they came back normal...no Trisomy 17 was found. They did a buccal 
smear then and ran his chromosomes for over 1500 different syndromes and 
chromosome abnormalities. That test did not come back till after he passed 
away. They came back negative for Trisomy 17 also. No one wanted to treat
Michaels problems cause they pretty much told me he was not worth it since
he had Trisomy 17. No childrens hospitals would take him.

Well guess what we just found out a few days ago he did not have it. They 
may have been able to save his life had they been looking at the right 
things but everyone had blinders on and refused to see past the Trisomy 17 
which Michael did not have after all. We are still waiting on autopsy 
reports which may take weeks yet but the doctors have asured me this child 
had no chromosome abnormalities.

I can assure all of you on this site that I hope to take this up to the
highest US government body I can someday because I saw first hand how
Trisomy babies are brushed off like they dont even matter. Once his Trisomy
label went away after the first test people were scrambling to get him heart

surgery. He passed away waiting to be saved but it was too late.

I feel all of your pain and my own and maybe this was my sons purpose here
on this earth was to make my voice heard for all these babies who cant speak

for themselves but I can assure you all.....that if you listen hard enough
you will hear me loud and clear. I will fight for these kids till the day I
die now cause no person should ever be treated like my son and so many of
your children may have been.

I have spent weeks and months researching everything about every form of 
Trisomy and doctors are amazed at how much I can trip them up on. I know 
more about this then half of them do. I continue to search the interent 
everyday about all types of cases around the world and I will make these 
childrens voices heard loud and clear.

For all of you parents out there who know what I mean I hope you will join
me in my quest for justice and for our childrens voices to be heard one day
when I get this to the highest government body I can. I have already begun 
to write letters and getting ready to send emails and I will not stop till
the day I join my son in heaven. Our kids deserve to be heard!!!

Theresa











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

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