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Dr.
Brian
Sims,
neonatologist
with the
department
of
pediatrics
at The
University
of
Alabama
at
Birmingham
hospital,
recounts
the
birth of
Curtis
Means,
on
Wednesday,
March
23,
2022, in
Birmingham,
Ala. “A
baby
that’s
trying
to live
will
show you
that.
You’ll
see that
the
baby’s
trying
to take
a
breath,”
Sims
said.
“We
support
the
babies
that
give us
those
signs.”
(AP
Photo/Butch
Dill) |
|
The
tiniest
babies:
Shifting
the
boundary
of life
earlier
apnews.com
BIRMINGHAM,
Ala. -
Michelle
Butler
was just
over
halfway
through
her
pregnancy
when her
water
broke
and
contractions
wracked
her
body.
She
couldn’t
escape a
terrifying
truth:
Her
twins
were
coming
much too
soon.
Dr.
Brian
Sims
entered
the
delivery
room and
gently
explained
that
babies
born so
early
likely
won’t
live. He
told
Butler
he could
keep
them
comfortable
as they
died.
But she
pleaded
through
tears:
“Give my
twins a
chance
to
survive.”
And he
did.
Until
recently,
trying
to save
babies
born
this
early
would
have
been
futile.
Butler
was in
the
fifth
month of
her
pregnancy,
one day
past 21
weeks
gestation.
That’s
seven
weeks
earlier
than
what
doctors
once
considered
“the
lower
limit of
viability,”
the
earliest
an
infant
could
possibly
survive
outside
the
womb.
But over
the last
half
century,
medical
science
has
slowly
shifted
that
boundary
downward.
And
that’s
made
viability
— a word
many
associate
with the
abortion
debate —
key to
decisions
about
desperately
wanted
babies
at the
very
edge of
life.
Growing
numbers
of
extremely
premature
infants
are
getting
lifesaving
treatment
and
surviving.
A
pivotal
study in
the
Journal
of the
American
Medical
Association
this
year,
which
looked
at
nearly
11,000
such
births
in a
neonatal
research
network
that is
part of
the
National
Institutes
of
Health,
found
that 30%
of
babies
born at
22
weeks,
56% born
at 23
weeks
and 71%
born at
24 weeks
lived at
least
until
they
were
healthy
enough
to be
sent
home
home if
doctors
tried to
save
them.
Those
gains
happened
gradually
and
quietly
as the
notion
of
viability
got a
lot more
attention
in the
abortion
arena.
Viability
is
mentioned
36 times
in the
initial
draft of
the
leaked
majority
opinion
by the
U.S.
Supreme
Court in
a
Mississippi
case
that
would
strike
down Roe
v. Wade.
The
decades-old
abortion
ruling
says the
Constitution
protects
a
woman’s
right to
an
abortion
before
viability,
a
standard
Mississippi
argues
is
arbitrary.
But
viability
has
nothing
to do
with the
vast
majority
of
abortions;
more
than 99%
of
abortions
occur at
or
before
21
weeks,
according
to
federal
statistics.
So
although
viability
is
central
to
abortion
law, the
crux of
the
argument
around
the
procedure
comes
down to
disagreement
about
whether
and in
which
cases
someone
should
have the
choice
to
terminate
a
pregnancy.
Meanwhile,
viability
is a
growing
real
concern
for
those
who care
for
premature
babies
as
science
keeps
moving
the line
lower
and
lower.
And in
this
realm,
too,
it’s
ethically
fraught.
Beyond
the risk
of
death,
babies
at
“borderline
viability”
are
highly
susceptible
to
disabilities
such as
cerebral
palsy,
cognitive
impairments,
blindness
and
severe
lung
problems.
Often,
parents
and
doctors
face a
heartbreaking
question
they
must
answer
together:
How do
they
decide
what to
do?
“There’s
a lot of
things
we can
do, a
lot of
interventions,”
said Dr.
Barbara
Warner,
a
newborn
medicine
expert
at
Washington
University
medical
school
in St.
Louis.
“Should
we do
them?”
In the
case of
Butler’s
twins,
the
answer
was yes.
Curtis
and
C’Asya
Means
came
into the
world on
July 5,
2020, at
the
University
of
Alabama
hospital
in
Birmingham,
each
weighing
less
than a
pound
and
small
enough
to fit
in an
adult’s
hand.
Their
divergent
paths
reflected
both
sides of
extreme
prematurity.
C’Asya
lived
just one
day.
Butler
keeps
her
ashes in
a tiny
pink-and-silver
urn.
Curtis
is the
earliest
surviving
“micropreemie”
in the
world
and is
now
teething,
trying
solid
foods
and
tooling
around
the
house in
his
walker.
‘A SLOW
EVOLUTION’
Each
year in
the U.S,
about
380,000
babies
are born
prematurely,
or
earlier
than 37
weeks of
a
typical
40-week
pregnancy.
About
19,000
arrive
before
the
third
trimester.
Babies
born so
soon
faced
bleak
prospects
until
the
latter
half of
the 20th
century.
That’s
when
incubator
technology
evolved,
neonatology
became a
specialty
and two
medications
began to
be
widely
used:
steroids
during
pregnancy
to speed
up fetal
lung
development,
and
synthetic
“surfactant”
given to
babies
to keep
their
airways
open.
“I don’t
think I
could
point to
a single
new
technology
or new
medication
or
approach
that has
been the
driver
of
keeping
infants
alive at
these
really
low
limits
of
gestation,”
said Dr.
Elizabeth
Foglia,
a
neonatologist
at
Children’s
Hospital
of
Philadelphia.
“It’s
just a
slow
evolution”
that
cascaded
into “a
sea
change.”
For many
years,
the
“edge of
viability”
remained
around
24
weeks,
she
said.
During
her
pediatric
residency
from
2006-2009,
“those
were the
patients
that
were
sort of
the
earliest
we would
intervene
and the
patients
we were
most
worried
about.”
Nicholas
Hall’s
twins,
Graham
and
Reece,
were
born at
25 weeks
in 2006.
Graham
spent
his
45-day
life
connected
to a
breathing
tube,
getting
nutrients
through
an IV.
“He
could
never
rest,”
said the
Bloomington,
Indiana,
dad, who
with his
now
ex-wife
started
a
nonprofit
to
support
parents
called
Graham’s
Foundation.
Reece
survived.
But she
spent
119 days
in the
NICU,
needed
emergency
surgery
for a
buildup
of fluid
in her
brain,
and came
home on
oxygen.
She
still
has a
hearing
problem
called
auditory
processing
disorder.
Complications
remain
common
even as
three
decades
of
research
show a
progressive
increase
in
survival
rates
for
babies
born at
22 to 25
weeks.
Care for
these
babies
also
remains
intense.
Even
today,
up to a
year in
the
hospital
isn’t
unusual
for
micropreemies,
and
costs
can run
into the
millions
of
dollars.
Most of
these
infants
spend
time on
ventilators,
are
warmed
in
isolettes
and get
fluids
and
nutrition
through
tubes.
Their
skin, as
delicate
as a
burn
victim’s,
needs
meticulous
care.
Hospitals
have
differing
practices
on when
to
provide
this
sort of
care to
the very
youngest
micropreemies,
which
leads to
varying
survival
rates.
One
survey
found
that
about 6
in 10
U.S.
hospitals
actively
treated
22-week
babies
in 2019,
up from
26% in
2007.
The data
doesn’t
include
the few
surviving
babies
born
during
the 21st
week of
pregnancy.
“If
you’re
an
institution
that’s
fully
committed
to
resuscitation
at 22
weeks,
then
studies
show
pretty
clearly
that
just by
virtue
of
offering
the full
spectrum
of
intensive
care,
you are
going to
be more
likely
to have
babies
who
survive,”
Foglia
said.
TINY
FIGHTER
Sims,
who
treated
Butler’s
twins,
said it
would
have
been
“perfectly
reasonable”
not to
try to
save
them. In
such
cases,
whether
to
resuscitate
or
continue
lifesaving
care is
a shared
decision
between
parents
and the
medical
team.
“But
even
when we
don’t
try
anything,
a baby
that’s
trying
to live
will
show you
that.
You’ll
see that
the
baby’s
trying
to take
a
breath,”
Sims
said.
“We
support
the
babies
that
give us
those
signs.”
As soon
as
Curtis
and
C’Asya
arrived,
Sims
gave
each a
little
bit of
oxygen.
Curtis’
heart
rate
quickly
rose.
His
smaller
sister
didn’t
respond
as well.
Other
medical
measures
for the
twins,
such as
ventilators
and
surfactant,
couldn’t
compensate
for her
immature
lungs.
“They
told me
it was
up to me
to make
the
call”
about
withdrawing
treatment,
Butler
said. “I
actually
was
praying
silently
to
myself.
God came
to me
and told
me, ‘If
you give
me
C’Asya,
I’ll
give you
Curtis.’”
Butler
cradled
her
daughter
for
hours
after
she
died. It
was the
first
time she
held
her.
Curtis
stayed
in the
NICU for
nine
more
months.
Butler
made the
90-minute
trek
from her
home in
rural
Eutaw to
Birmingham
several
times a
week.
She read
books to
Curtis
and
often
held him
inside
her
shirt so
his skin
touched
hers.
Curtis
went
home
tethered
to
oxygen.
Butler,
a single
mom with
two
older
kids,
made
sure the
levels
didn’t
drop,
gave him
medicines
five
times a
day and
regularly
set his
feeding
pump to
dispense
the
right
amount
of food
into a
tube in
his
stomach.
More
than a
year
later,
Curtis
is down
to one
medication
for high
blood
pressure
and two
inhalers.
He can
be
unhooked
from
oxygen
for an
hour a
day. At
22
months
old and
around
20
pounds,
he’s an
active
toddler
who
crawls,
pulls
himself
up and
plays
with his
older
sister
and
brother.
When
Butler
woke him
one
morning,
he
fussed
and
fumbled
with the
feeding
tube
that
still
provides
much of
his
nutrition.
But soon
he was
scooting
his
walker
around
the
kitchen
and
curiously
opening
cabinets
as
Butler
scrambled
eggs,
one of a
growing
number
of soft
and
pureed
foods he
can now
ingest.
“Wanna
eat-eat?”
she
coaxed,
offering
a tiny
bit of
egg.
He
eagerly
popped
it in
his
mouth,
then
smiled
and
grabbed
a much
bigger
helping
from her
plate.
BITTERSWEET
PROGRESS
In the
future,
doctors
expect
more
micropreemies
like
Curtis
to
survive.
One
reason?
Saving
them
will
become
more
accepted
and
common.
Last
year,
the
influential
American
College
of
Obstetricians
and
Gynecologists
updated
its
recommendations
to say
steroids
before
birth
may be
considered
if
resuscitation
is
planned
at 22
weeks.
Previously,
the
measure
was not
recommended
for
babies
that
young.
And down
the
road,
scientists
are
working
on
lifesaving
equipment
tailored
to
smaller
bodies
and an
artificial
womb
they
hope
could
someday
grow a
fetus
outside
of a
person.
Such
advances
are sure
to
deepen
ethical
dilemmas.
“There
always
will be
a limit
of
viability.
Where
that
limit is
may
change
over
time as
technology
evolves
and our
ability
to care
for less
and less
mature
babies
evolves,”
Foglia
said.
But
wherever
that
limit
is,
“survival
may be
possible
but not
guaranteed.
And
survival
without
disability
is
certainly
not
guaranteed.”
Hall
said
doctors
shouldn’t
keep
trying
to move
the
viability
line
down
until
they can
truly
reduce
the
long-term
medical
problems
associated
with
extremely
premature
babies
born
today.
Cori
Laemmle
of Fort
Wayne,
Indiana,
who gave
birth to
twin
boys in
2020 at
22
weeks,
said
decisions
about
whether
to treat
such
infants
should
consider
the
individual
circumstances
and be
guided
by a
question:
“Are the
interventions
going to
do more
harm
than
good?”
Washington
University’s
Warner
said
everyone
needs to
think
about
how the
babies
might
suffer.
This was
why
Laemmle
and her
husband
decided
to let
one of
her
twins go
— he was
crashing
with a
collapsed
lung.
The
other
twin
responded
well to
treatment.
He’s now
getting
speech
and
physical
therapy
and
hitting
the
usual
milestones
in all
areas
but
speech.
Doctors
are
hopeful
that
Curtis
Means –
he has
his
father’s
last
name –
will
also
continue
to
thrive.
Dr.
Brett
Turner,
his
pulmonologist,
now sees
him
every
two or
three
months
to
manage
his
ongoing
lung
disease.
“As he
grows …
those
visits
will
slowly
all be
able to
be
spaced
out,”
Turner
said.
“Hopefully,
he’ll
require
fewer
and
fewer
doctors
to care
for
him.”
At home,
his
35-year-old
mother
spends
less
time
tending
to
Curtis’
medical
needs
and more
time
just
hanging
out with
him.
One
afternoon,
she
pulled
Curtis
out of
his
walker
and into
her
arms. He
grabbed
at her
face.
She
kissed
his
hand.
She
pulled
down his
Winnie-the-Pooh
shirt,
and they
touched
palms in
a high
five.
Butler,
who is
studying
to be a
cosmetologist,
envisions
Curtis
going to
school
in a few
years
and
becoming
a doctor
someday.
But as
he
grows,
she
always
wants
him to
remember
the twin
who will
never
see such
a
future.
“Anytime
he has a
party,
it’s
going to
be about
her
too,”
with
both
names on
the
cakes,
Butler
said. “I
mention
her name
every
day for
him, to
let him
know he
was a
twin and
‘your
twin is
your
angel.’
And when
he gets
bigger,
I’m
going to
get him
a
necklace
where he
can keep
her
ashes
with
him.”
___
The
Associated
Press
Health
and
Science
Department
receives
support
from the
Howard
Hughes
Medical
Institute’s
Department
of
Science
Education.
The AP
is
solely
responsible
for all
content.
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