[tri-med] Re: T-18 help

>>>You have to ask yourself what kind of balance you want for your daughter.

or instance, my husband and I decided not to have her on meds - she was 
ever quite herself on them.  We decided against the oxygen b/c she HATED 
t!  We decided that we'd rather her be happy and live as long as God let 
er than inundate her with all that stuff.  However, had she tolerated 
oth, we certainly would have gone that route.
Each parent is different.  Know that whatever decisions you make for your 
aughter is out of love.  <<<<<<<<<


this is so true!

my Rebecca was born with the DX of t18 and 4 holes in her heart PDA PFO ASD
AND VSD. ( we did later on learn she was mosaic  but a small percentage of
normal cells ) She was happy and healthy and was never hospitalized for
illness only surgery and tests.  She was on a lot of meds for her GE reflux
but no heart meds or oxygen. She lived until she was 14 1/2 years old.  We
live in Ontario Canada so we have socialized Medicare so the options open to
us are different then in the states. When Rebecca was born they told me that
she would die before she turned one and since that was in the days of no
wide spread internet and the fact that I am an RN I believed them. No heart
surgery was ever suggested or offered.  And because of the above I never
pushed on the heart surgery as surgery is risky to anyone  and can be more
so for our triers.  Some of our triers have had surgery for things and have
not had good out comes so it is a very personal decision and we decided that
since she was healthy and happy not to push for it. It was also always in
the back of my mind that if she got surgery some other child might have to
wait too long  ( after talking to the mom of a baby in NICU who was waiting
for a heart transplant) ( our wait lists can be very very long)   Over the
years she was seen by cardiology and we were told that some of the holes had
closed and we were always told that the remaining ASD was small and
membranous she had very few echo's because cardiology at the hospital for
sick children in Toronto ( a world class hospital ) did not think it was
necessary and that was 2 different cardiologists ( 3 total over the years) I
never even thought to get a second opinion as she was doing so well.
We were fine with our decisions.  People would after hearing how the stats
on t18 is that only 10 % will live to be 1 yr old ask me would cause her to
die and I would always say that it would be her heart giving out or
pneumonia............well it was both, she had pneumococcal pneumonia and
her heart could not handle it............she died in her sleep 32 hrs after
being seen in our local ER for temp and being treated for an ear infection!
Do I have regrets? Of course I do!  But I am sure I would no matter what
decisions were made, as my mom says "hind sight is 20/20" the autopsy showed
that her heart was really bad ( from the prelim) I have yet to pick up the
official report, early on I wanted now I just can't bring myself to pick it
up.  My mom says that Rebecca lived on love and she was truly loved and
dearly missed. 


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


 

                  Building ___ooOOoo__ Rainbows
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