Annette, I'm sorry that you are having such a difficult time. I am glad
though, that this paediatrician has been so open with you. It gives you time
to find out what your options are and to get the help that you need. For
most this opportunity never comes. We were lied to about many of Becky's
conditions and particularly about her heart. Others have been told that
things that could be repaired, can't be. It seems that doctors are using the
'must not prolong death' part of their commitment without full consultation
with the parent and in a pretty haphazard fashion. This is the part that
saddens me most. Parents must be informed honestly of every test result, of
every defect and all of the medical options, even if it is in best sought in
another location, especially of a hospitals decision to withhold treatment.
If this isn't law, it needs to be.
I think one of the problems is that the doctors are trying to 'save' the
family from difficult decisions and yes, to protect the child from families
that can't say 'enough'. Full disclosure will not solve this problem
completely. It will still be the hardest thing that they will ever be called
on to do, it will still be the hardest thing parents will ever have to do,
but, it is still the right way to handle the situation. For both the family
and the medical personel.
Catherine, Becky's mom. (27 years, Trisomy 13 Mosaic)
Building ___ooOOoo__ Rainbows
www.trisomyonline.org
Families Helping Families On-line