[tri-med] Heart Surgery - Pam

I remember when I was pregnant with Caroline, we thought she had a
hypoplastic left heart (she didn't).  We were not going to intervene with
surgery as this surgery is very risky and complicated even on an otherwise
healthy and normal baby.  We met with some neonatologists to discuss our
birth plans.  One of them told us that there were actually parents of T18
and 13 who want to go ahead with this surgery.  We were shocked and thought
that was awful.

That was before we entered our own world of trisomy and have "met" so many
people on this list.  I used to have such an inaccurate view of the quality
of life of these child.  I used to think that the child were ALL pretty much
nonresponsive and not able to do anything on their own.   Now I know
differently.  My Caroline is very responsive. She is developing - slowly
but surely. Parents look at drs and counselors as the "experts" on the life
of a trisomy child, but they are not even close to being experts.  It is too
bad that the drs don't strongly recommend that parents with such a child
talk to other parents like the ones on this list to get a more accurate view
on daily life with trisomy children.  The dr's see many trisomy children
only when they are having health issues.  Those that are doing fine don't
need the dr.  The dr's don't see our children day in and out.  They don't
know that even though life may be more difficult with a trisomy child, it
also can be a joy as when our children hit a new milestone, it creates an
incredible amount of joy, more joy than you can ever imagine!!!  Life can be
hard, but life is still good.

I still probably would not put Caroline through hypoplastic surgery as it is
so difficult and I don't really think it is fair even if the child has a
normal amount of chromosomes, however, there are definitely many many types
of surgeries that should be undergone and should never be refused just
because the dr thinks our child isn't worth their effort.  Our children are
worth every effort!!!  They deserve a chance at life as much as any other
human being on earth does.

Irene
(Christina - almost 3  y.o. and Caroline - 14 mo. with partial trisomy 17p)
http://www.babiesonline.com/babies/c/carolinerochelle

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

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