|
Thanx Jim for beating me to the punch, I was
about to post similar info after collecting more data.
----- Original Message -----
Sent: Friday, April 01, 2005 4:57
PM
Subject: RE: [QUAD-L] The blame
game
Nearly all babies born with the
incurable condition, often diagnosed in utero, die shortly after
birth
Sun Hudson, the nearly 6-month-old at
Texas Children's Hospital in Houston, diagnosed and slowly dying with a
rare form of dwarfism (thanatophoric dysplasia)
What is
thanatophoric dysplasia?
Thanatophoric dysplasia is a severe inherited
skeletal disorder characterized by extremely short limbs and folds of extra
skin on the arms and legs.
Infants with this condition have
disproportionately short arms and legs with extra folds of skin. Other signs
of the disorder include a narrow chest, small ribs, underdeveloped lungs, and
an enlarged head with a large forehead and prominent, wide-spaced eyes.
Infants with type 1 thanatophoric dysplasia also have curved thigh bones and
flattened bones of the spine (platyspondyly). An unusual head shape called a
cloverleaf skull is seen with type 2 thanatophoric dysplasia.
The
term thanatophoric is Greek for "death bearing." Infants with this
condition are usually stillborn or die shortly after birth from respiratory
failure; however, some children have survived into childhood with a lot of
medical help. These children are severely mentally retarded due to a variety
of brain abnormalities and have difficulty breathing on their
own.
Under chapter 166 of the Texas Health and Safety Code, if an
attending physician disagrees with a surrogate over a life-and-death treatment
decision, there must be an ethics committee consultation (with notice to the
surrogate and an opportunity to participate). In a futility case such as
Sun Hudson's, in which the treatment team is seeking to stop treatment deemed
to be nonbeneficial, if the ethics committee agrees with the team, the
hospital will be authorized to discontinue the disputed treatment (after a
10-day delay, during which the hospital must help try to find a facility that
will accept a transfer of the patient). These provisions, which were
added to Texas law in 1999, originally applied only to adult patients;
in 2003; they were made applicable to disputes over treatment decisions
for or on behalf of minors.
Since Bush became president in
2001 how can he be responsible for a baby being removed from life-support in
2005 when the provision for minors was added in 2003?
At
12:59 PM 4/1/2005, QuadPirate wrote:
No he died "after" they removed
life support not before so to say that he died from anything else is mute
unless you can see in the future.
It clearly states in your post "nearly"
all babies die from this not every baby so they don't know if he would've
survived or not but they sure made the percentage higher.
Mark
-------Original Message-------
As for the baby
that was removed from life-support in accordance with the 1999 Act:
- Sun was born with a fatal form of dwarfism
characterized by short arms, short legs and lungs too tiny, doctors said.
Nearly all babies born with the incurable condition, often diagnosed in
utero, die shortly after birth, genetic counselors say.
- Sun was delivered full term at St. Luke's Episcopal Hospital, but
Hudson, 33, said she had no prenatal care during which his condition might
have been discovered.
- He was put on a ventilator while doctors figured out what was wrong
with him, and Hudson refused when doctors recommended withdrawing
treatment.
- Texas Children's contended that continuing care for Sun was medically
inappropriate, prolonged suffering and violated physician ethics. Hudson
argued her son just needed more time to grow and be weaned from the
ventilator.
So it was the baby's fatal
condition that he was born with that killed him not the removal of
life-support.
|
