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Neonatal junctional epidermolysis bullosa: treatment conundrums and ethical decision making.
[junctional epidermolysis bullosa]
Junctional
epidermolysis
bullosa
(
JEB
)
,
generalized
severe
(
previously
called
JEB
,
Herlitz-
type
)
has
an
extremely
poor
prognosis
,
with
a
mean
age
of
death
at
5
months
old
and
most
dead
before
age
3
years
.
We
describe
a
typical
case
of
a
neonate
with
JEB
who
developed
failure
to
thrive
before
his
death
from
fungal
septicemia
at
4
months
of
age
.
This
case
highlights
the
ethical
considerations
of
invasive
treatments
such
as
gastrostomy
tube
placements
,
intubations
,
and
central
line
placements
in
neonates
with
JEB
.
We
review
the
literature
as
well
as
discuss
the
ethical
conundrums
in
the
care
of
patients
with
JEB
and
other
severe
forms
of
epidermolysis
bullosa
.