In a message dated 7/21/03 7:10:04 AM, karens@xxxxxxxxxxxxxxxx writes:
<< The reality is that such birth defects do occur and perhaps more commonly
than we are exposed to on the list. >>
One of the workshops we had at the conference was on medical ethics. There
was a discussion on what kind of support should be given and who should get it.
A sort of how bad is bad. I have got to give the guy credit or even daring to
walk in on our group. My hope is that he got a huge education from our point
of view and maybe even changed some of his deeper opinions on how bad is bad.
Of course, he didn't know he was addressing a loaded deck. Our dinner speaker
was a man who had adopted a little girl who was born with only a brain stem and
all had told the parents that she could not live. She brought the family
great joy for eight years. And may of us had our own stories of our terminal
kids
not being quite so terminal. Near the end of his lecture, he showed a picture
of a baby who had a similar defect (to our speaker's daughter) and even
worse, the skull had not closed so what was there was totally exposed, almost
like
a Star Wars character. He then asked if she should have had full life support
since her prognosis was so poor. I wonder if he really thought any of us would
have said, "Oh, go ahead, don't feed her." I thought he was rather
disparaging of the mother. She was poor, uneducated and after release from the
hospital
the baby lived in a skilled nursing facility. The mother did go to visit the
baby every day of her life, but every time she got sick and had to be
hospitalized, the mom insisted on full support for the baby. Finally someone
asked how
long the baby lived. She had survived over two years and her mom went to visit
her every day of her short life. When we heard that, the general consensus
was, the mom had most definitly done the right thing. The picture he showed of
this baby was indeed the most startling of all of the pictures he had shown. I
asked if the baby had been born with the same anomoly and a closed skull, or
born with something just as disabling only not so shocking looking, would we
have this discussion on whether or not the baby should get nutrition and water.
He replied, "Probably not". I think the picture on the web site should stay.
Nan---Mom to Dom, 19; Tri18 Mosaic, Bipolar Disorder and Ali, 19; Autism, TS,
ADHD
Building ___ooOOoo__ Rainbows
www.trisomyonline.org
Families Helping Families On-line