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never let go
BY KELLEY BENHAM • TIMES
TIMES STAFF
STAFF WRITER
WRITER
CHERIE
DIEZ
CHERIE
DIEZ| Times
| Times
DAY ONE: The doctors did what they could to delay my baby’s birth, but she arrived four months too soon. At 23 weeks’ gestation, she was so early our doctors would not insist on trying to save her. It might be
kinder, we were told, to let her die. She weighed 1 pound, 4 ounces. We didn’t know if she would live even an hour. The footprints at the top of this page are actual size.
DAY ONE: The doctors did what they could to delay my baby’s birth, but she arrived four months too soon. At 23 weeks’ gestation, she was so early our doctors would not insist on trying to
save her. It might be kinder, we were told, to let her die. She weighed 1 pound, 4 ounces. We didn’t know if she would live even an hour. The footprints at the top of this page are actual size.
PART ONE
PART ONE
lost and found
lost and found
When a baby is born at the edge of viability, which is the greater act of love: to save her, or to say goodbye?
O
ur baby came
into viewwhich
in black andis
white,
after week, in
the grainy
wedge onto save her, or to
When a baby is born at the edge
of swirling
viability,
theweekgreater
act
of love:
the ultrasound monitor. First a dark featureless pool, then a tiny orb, then budding arms and
legs and finally long fingers and a recognizable profile. Precisely on schedule, I felt her squirm
and thump.
After years of grueling and unnatural fertility treatments, the promise of her unfolded easily.
We learned her gender in week 16, cataloged her anatomy in week 20. I scrubbed the baseboards in the spare bedroom and stopped buttoning my jeans. I tried to imagine her as a real
child, in my hands and in my life. I drew, in ballpoint pen, her cartoon outline on my skin — with big eyes, a sprout
of hair, and an umbilical tether to my navel that made her look like a startled space walker. That was the extent to
which I understood her: only in outline, the details waiting to be filled in.
say goodbye?
Our baby by came swirling into view in black and
white, week after week, in the grainy wedge on the
ultrasound monitor. First
a dark
featureless
then
Suddenly
there was
blood. Blood onpool,
my hands.
Blood
on
a
thin
cotton
hospital
gown.
Blood
in
red
rivulets
and
a tiny orb, then budding
arms
and
legs
and
finally
long
blood in dark clumps. Bright beads of blood on the docfingers and a recognizable
on schedtor’s blue profile.
latex gloves. Precisely
Blood in such startling
quantity
we could only imagine there was no life, no baby, not
ule, I felt her squirm anymore.
and thump.
After years of grueling
and unnatural
fertility
treatMy obstetrician
looked stricken
that day
in March
2011 when he rushed into a triage room at Bayfront
ments, the promise ofMedical
her Center.
unfolded
easily.
I clenched and vomited as he explained
that our
had no
chance
of surviving her
outside the
We learned her gender
inbaby
week
16,
cataloged
womb — if she wasn’t already gone. A tech tried for long
anatomy in week 20.minutes
I scrubbed
the
baseboards
in searchto summon a heartbeat on the monitor,
ing
every
quadrant
of
my
abdomen.
I
don’t
rememthe spare bedroom and stopped buttoning my jeans.
I
tried to imagine her as a real child, in my hands and
in my life. I drew, in ballpoint pen, her cartoon outline
on
skin
- with
big eyes,
ber ifmy
we held
our breath
or gasped
or spoke a
or sprout
sobbed. of hair, and an
Iumbilical
remember only
the
frozen
shock
when
a
heartbeat
tether to my navel that made her look like a
flooded the room, a sound like a galloping horse.
startled
space
walker.
was
the extent to which I
In just a few
hours, our
baby hadThat
been lost
and then
found. On the monitor, she bobbed and floated in a pixunderstood
her: only in outline, the details waiting to
elated haze. But next to her loomed a mysterious shape
be
filled
in. there two days before: a clot of blood
that had
not been
the size of a fist, created as the placenta had begun to
Suddenly there was blood. Blood on my hands.
tear loose from my body. A nurse pumped drugs into an
IV
to stall the
and gradually
took a tenuous
Blood
onlabor,
a thin
cottonthey
hospital
gown. Blood in red
hold. But it was clear to everyone that the reprieve was
rivulets
and
blood
in
dark
clumps.
Bright beads of
temporary. My baby and I were coming apart.
Continued
next
page
blood on the doctor’s blue latex gloves. Blood in such
.
4 | Sunday, December 9, 2012 | Tampa Bay Times
SSB
never let go: PART ONE
most mornings, she needs a good jolt of coffee to
get going. But today, all it took was a look at her
assignment sheet: 23 weeker.
When she was pregnant with her son, she said,
she had nightmares that he was born at 23 weeks.
She readied a mobile incubator that would
keep the baby warm and monitored on the short
ride to the NICU. She made a nest of blankets and
spread a pillowcase over it to catch the blood.
The baby’s arm would be so small she’d use a rubber band for a tourniquet. She got out a No. 1 blood
pressure cuff, small enough to fit around her finger.
She set the warmer to 37 degrees Celsius, laid out
catheters for IVs and wires for monitors. She drew
a mixture of sugar and dextrose in a 60 mL syringe
— a snack to get the baby started. And she drew 1.4
mL of an artificial lung surfactant — a milky mix of
fats and proteins that would help prevent the baby’s
sticky lungs from collapsing.
A respiratory technician was prepping the ventilator and a neonatologist and a nurse practitioner were studying the chart. When Gwen had
everything ready, she stepped to the doorway to
watch the C-section.
Some of what happened next would be out of
her control. Some babies came out fighting and
some did not. You never know what’s coming out
of that belly, she thought.
www.tampabay.com/neverletgo
chest heaved mechanically.
She weighed 570 grams — 1 pound, 4 ounces.
She was 11.4 inches long — the length of a Barbie doll.
I saw Gwen roll the incubator past. Inside was
a raw dark creature, a blur in a too-big hat. My
husband looked at me and looked at the baby.
“Go with her,” I said. “Please go.”
startling quantity we could only imagine there was no
life, no baby, not anymore.
My obstetrician looked stricken that day in March
2011 when he rushed into a triage
room at Bayfront
baby at 23 weeks’ gestation has just begun
to hear, but can’t yet see. It may recogMedical Center. I clenched andnize
vomited
as he
its mother’s voice.
It hasexa dawning awareness of whether it is right side up or
FLYWEIGHT: Our baby was bruised by the delivery and emerged looking like a wasted prizefighter.
plained that our baby had no
chance
of surviving
upside
down. The surface
of its brain is smooth,
Extremely preterm babies like her are vulnerable in every system of their bodies. Her immature brain,
just beginning to develop the hills and valleys
lungs and intestines were all at risk of bleeding and scarring. Her eyes were fused shut; a mask
that becomealready
wrinkles and folds.
It responds
to
protected them from the lights correcting her jaundice. Her skin, thin like papyrus, easily tore. The
outside the womb - if she wasn’t
gone.
A
tech
pain, but has no capacity for memory or for comdoctors said some babies fight and some do not. Ours came out angry, squawking and kicking.
plex
thought.
Its
lungs
look
like
scrawny
saptried for long minutes to summon
a heartbeat on the
lings compared to the full, bushy trees of normal
lungs. Its bones are soft. It swallows. Its hair and
monitor, searching every quadrant
ofstarting
mytoabdomen.
and bruises
her body. Tubes
of her embryos I’m holding became my daughter. Reproductive
eyelashes are just
grow and its fingerBABYonPICTURES:
One snaked
of the out
5-day-old
mouth, her belly button, her hand. Wires moored
nails and fingerprints are just forming. Its body
endocrinologists
at the
University
created
embryos in a petri dish from
I don’t remember if we held
our
ordown.
gasped
Tape obscured
her face.
Her chinof South Florida
is covered
withbreath
a soft protective
It is recog- or her to monitors.
ABOUT
THEthese
JOURNALISTS
was long and narrow, her mouth agape because
nizably human, but barely.
my
husband’s
sperm
and
the
egg
of
a
donor.
We
knew
we
were
manipulating
Kelley
Benham
French,
38, has been a nature in our
of
the
tubes.
Dried
blood
crusted
the
corner
of
I
was
still
in
recovery
when
Tom
returned
from
spoke or sobbed. I remember
only the frozen shock her mouth and the top of her diaper. The diawriter and editor at the Times since 2003.
the NICU, crying.
determination to have a child. Later, when things
wrong,
we’d wonder
if we pushed too
She iswent
the winner
of a number
of national
per was smaller than a playing card, and it swal“She’s so perfect,” he said. His voice was a
when a heartbeat flooded the
room,
a
sound
like
a
awards for her writing, including the Ernie
hard.
lowed her.
She had no body fat, so she resembled
squeak. “She’s so beautiful.”
Pyle Award for Human Interest Writing and
a shrunken old man, missing his teeth. Her skin
I just stared at him. My sweet, emotional husthe National Headliner Award. She edited
galloping
was nearly translucent, and through her chest I
band, in the grip of something terrifying and overfelt a sickeninghorse.
tug. I knew that we were two
two series that were finalists for the Pulitzer
could see her flickering heart.
whelming. He’d been to a place I couldn’t fathom.
separate people now.
Prize: “Winter’s Tale”
in 2009is
andnothing
“For Their
no doctor
will
intervene,
because
there
he or
She kicked
and jerked. She
stretched
her arms
“That’s
my baby
girl up there,”
heand
kept saying.
Tom said.
He was peering
In“She’s
justkicking,”
a few
hours,
our baby
had
been
lost
then
Own
Good” in 2010.
wide, palms open, as if in welcome or surrender.
“That’s my daughter.”
over the surgical drape at the gaping red meat of
Cherie
Diez
has
worked
at
the
Times
for
I
recognized
her.
I
knew
the
shape
of
her
head
my
abdomen,
and
at
the
creature
that
had
just
can do.
found.
On the monitor, she bobbed and floated in a and theshe
more than 20 years. Many of her stories
curve of her butt. I knew the strength of
emerged from it. Someone said she cried, but I
won international awards, including
her kick. I Other
knew how she
had fit inside
me, and in thehave
didn’t hear it. I tasted prune vomit in my mouth.
used to imagine what I would say to her
babies
ripen
womb
into the third trimespixelated
haze.
But
loomed
mysterious
top honors in both Pictures of the Year and
felt an acute sensation that she had been cut out,
Pretty soon someone
slipped
a piecenext
of paper to her
when
I first saw her.aShe’d
be wrapped in a
National Press Photographers competitions.
and of how wrong that was.
in front of me, and an ink pad, and asked for a
blanket and wearing a hat, and she’d feel
but arrive
a little
baby
iswith
born
shape
hadwerenot
beenfoot-there
days
before:
a clot
1997ashe
collaborated
Thomaslater than
I hadter
crazy thoughts.
Should we prepare
a birthearly. InIf
fingerprint. that
On the paper
two still-wet
solid two
in my arms,
like a puppy.
She might open
one
French to produce “Angels and Demons,”
announcement? What would we name her? If she
prints, each an inch and a half long. Startling evieye and peek up at me, perplexed but curious. She
the
Pulitzer
Prize-winning
series
on
the doctors
about
25
weeks,
studies
show
that
almost
all
died, would we get a birth certificate? Would there
dence
that she was
here. size of a fist, created
would know my
my smell, know Ihad
was
of
blood
the
asvoice
theandplacenta
murder of an Ohio mother and her two teen
be a funeral? Would we get a box of ashes, and if so,
“My baby,” I kept saying, “my baby, my baby.”
her mother, and because she knew that, she would
daughters in Tampa
what size
box? Was
she aware of us?
Did shelegally
recogGwen tookto
the tiny
blood-spotted
from my
notbody.
be afraid. I’d
hit with a force
that would
feel
morally
and
obligated
toBay.try to save its life.
begun
tear
loosebundle
from
Abenurse
pumped
nize me like I recognized her? Was she afraid? Did
the delivery nurse. She unwrapped her, laid her
unmake me and remake me, right there.
she wonder where I had gone? If she ever got out of
on heat packs, and slipped her into a plastic bag
Instead I waited in recovery while she fought for
THE
STORY
ONLINE
Some preemies have serious medical problems, but
drugs
into
anprevent
IV to
labor,
andbeyond
gradually
this box, would she know I was her mother?
up to her neck
to help
heat stall
and fluidtheher
life somewhere
my reach. After they
seven
Scan this code with
She was alien and familiar. She was terrifying
loss. Gwen rubbed and dried her like a mother
hours Tom took me up to the NICU in a wheelchair,
your mobile device
most
few
days or weeks
in tothe hospital learnand beautiful. She spend
was completeaand
interrupted.
cat roughs
uptenuous
a kitten, but more
gently, soBut
as not it was
still in myclear
cotton surgical
gown,
lugging an IV pole.
took
a
hold.
to
everyone
that
see our online coverage
I felt the icy hush that comes with looking at a
to tear her skin. The baby was dusky blue, then
Tom pushed my wheelchair up to the deep sink
at
tampabay.com/
you
are not
to see. I was and
peeking into
dark red. Gwen pinched the tiny greenish umbilI could scrub my hands. There were posted
ing
tomeant
breathe
eat and neverletgo.
then they
go home.
the
reprieve was temporary.soinstructions
My
baby
and I were com-secret
You will
God’s pocket.
ical cord between her thumb and forefinger and
and a disposable scrub brush and
find photo galleries,
“You canIn
touchbetween
her,” Gwen said. those scenarios
felt it throb. She counted 17 beats in six seconds.
I felt determined to do it properly, for the full 30
is
a
zone
multimedia, resources, between life
ing
apart.
I reached in through the porthole. I saw how
“Heart
rate is 170,” she called out. It was strong,
seconds, in the hottest possible water, as if precise
places to share reactions, personal
white and swollen my hand was. I let it hover
a good sign.
compliance with the rules might tip the odds.
death,
between
viability
andandfutility.
If a baby
experiences
more.
over herand
for a second,
then pulled
away, as if from
The baby was trying to breathe but her lungs
I saw her plastic box halfway across the room.
a fire. Finally I placed the tip of my pinky into her
were not ready and her muscles were weak.
I didn’t see anything else, just this tunnel of space
INFOGRAPHIC
is born after the 22nd weekPREEMIES
of pregnancy
but before
Through
the stethoscope
her breathing sounded
and of everything
changing
that marked
A normal
pregnancy
lastsand
40timeweeks.
I was
only
half-tinyShepalm.
grabbed on.
squeaky and coarse. A respiratory technithe distance between us. Here I was one person and
Scan this code with your
cian threaded a tube the size of thick spaghetti
there I would become someone else. The soap was
mobile device
to view
the
25th,
not
even
the
smartest
doctors
in
the world
way
through there.
her mouth and into her chest. Into the
hard to rinse, and I let the water run for a long time.
Kelley Benham can be reached at benham@tampabay.
and share the graphic.
tube she placed the milky fluid that would coat
Tom wheeled me to her portholed plastic box.
com or (727)
893-8848.
You
may
also
find
and
can say what will happen to
it. New technologies can
thelungs.
doctors
had
intervened,
my herself
babyas Gwen,
would
theIf
baby’s
She connected
her tonot
a small
The nurse introduced
but I
share this graphic at
portable ventilator that delivered oxygen at a
barely heard her. There, through the clear plastampabay.com/
sometimes
keep
these
micropreemies
alive, but many
WEDNESDAY: In a neverland of sick babies
constant pressure,
her finger over a But
tic, was
my odds
daughter. She
red and
angular,
neverletgo.
have
beenand
a tapped
miscarriage.
the
forwasher
had
not NEXT
hole in the tube to pace the breaths. The baby’s
angry like a fresh wound. She had a black eye
SUNDAY: Calculating the value of a life
end up disabled, some catastrophically so. Whether to
improved by much.
Early arrival kills more newborns than anything else, provide care to these infants is one of the fundamental
controversies in neonatology.
and complications from prematurity kill more babies
Babies born at the edge of viability force us to
in the first year than anything else.
debate
the most difficult questions in medicine and in
Some babies are born so early they are beyond reslife. Who deserves to live, and at what cost? Who decue. If a baby is born at or before the 22nd week, it is
usually considered a miscarriage or a stillbirth. Almost cides whether a life is worth saving, or worth living?
When does a fetus become a human being, with its
A
CHERIE DIEZ | Times
I
I
CHERIE DIEZ | Times
VIGIL: I saw my daughter for the first time when she was about seven hours old, when my husband, Tom, wheeled me to her bedside. She was dwarfed by technology. I knew the doctors had had no choice but
to deliver her, and that they were doing all they could to save her, but I kept thinking how wrong it was that she’d been cut from my body before she was ready. I wanted to put her back inside, to keep her safe.
ABOUT
STORY Intensive Care Unit admissions pod is the first landing spot for most premature babies at All Children's Hospital. It's a place where caregivers balance science and
FRONTIER:THIS
The Neonatal
All of my recollections in this story have been verified with the people involved, with photos and video taken at the time, and with thousands of pages of medical records. I
also relied on my own journal entries and notes taken by my husband, Thomas French, a journalist and author. To supplement my understanding of extreme prematurity, I
interviewed doctors, bioethicists and epidemiologists, I talked to other parents of micropreemies, and I read dozens of journal articles and books. Scenes for which I was not
present, such as Gwen Newton’s resuscitation of our baby, were described to me by the people who were present and verified by medical records. The statistic in the top
of the story about the number of babies born at the edge of viability comes from the National Center for Health Statistics’ U.S. birth certificate data from 2006, supplied by
Harvard epidemiologist Tyler J. VanderWeele. The statistics cited by Dr. Aaron Germain are from the Eunice Kennedy Shriver National Institute of Child Health and Human
Development Neonatal Research Network. Times researcher Natalie Watson contributed to this report. Times photographer Cherie Diez was at the hospital on the day our
baby was born as a friend of the family. Only much later did she and I return to the hospital as journalists.
For more detailed information about sources and research, go to tampabay.com/neverletgo.
compassion. Even as machines keep the babies alive, families are encouraged to touch and hold them as soon as they are stable enough. Incubators are kept covered when possible to protect
preemies' developing nervous systems from an assault of light and sound. Most babies eventually move to private rooms within the unit.
4 | Sunday, December 9, 2012 | Tampa Bay Times
SSB
never let go: PART ONE
most mornings, she needs a good jolt of coffee to
www.tampabay.com/neverletgo
chest heaved mechanically.
She weighed 570 grams — 1 pound, 4 ounces.
get going. But today, all it took was a look at her
own
rights?
When does lifeShebegin?
was 11.4 inches long — the length of a Barassignment
sheet: 23 weeker.
bie doll.
When she was pregnant with her son, she said,
I saw Gwen in
roll the
incubator
past. Inside
was
sheAbout
had nightmares
that he
was750
born at 23
weeks.
one
in
babies
arrives
that
awful
wina raw dark creature, a blur in a too-big hat. My
She readied a mobile incubator that would
husband
looked
at
me
and
looked
at
the
baby.
keep
the
baby
warm
and
monitored
on
the
short
dow
of time, suspended between
what is medically
“Go with her,” I said. “Please go.”
ride to the NICU. She made a nest of blankets and
spread a pillowcase over it to catch the blood.
possible
and
what
is
morally
right.
The baby’s arm would be so small she’d use a rubber band for a tourniquet. She got out a No. 1 blood
baby at 23 weeks’ gestation has just begun
Onecuff,of
was
12,
2011,
Bayfront
pressure
smallthem
enough to fit
aroundborn
her finger. on April
to hear,
but can’t
yet see.at
It may
recogShe set the warmer to 37 degrees Celsius, laid out
nize its mother’s voice. It has a dawncatheters for IVs and
wires for monitors.
She
drew
ing awareness of whether it is right side up or
FLYWEIGHT: Our baby was bruised by the delivery and emerged looking like a wasted prizefighter.
Medical
Center.
My
daughter.
a mixture of sugar and dextrose in a 60 mL syringe
upside down. The surface of its brain is smooth,
Extremely preterm babies like her are vulnerable in every system of their bodies. Her immature brain,
just
beginning
to
develop
the
hills
and
valleys
— aThis
snack to get
the
baby
started.
And
she
drew
1.4
lungs and intestines were all at risk of bleeding and scarring. Her eyes were fused shut; a mask
summer I returned, not
as a parent, but as a
that become wrinkles and folds. It responds to
mL of an artificial lung surfactant — a milky mix of
protected them from the lights correcting her jaundice. Her skin, thin like papyrus, easily tore. The
pain, but has no capacity for memory or for comfats and proteins that would help prevent the baby’s
journalist,
to the hospital where
myItsdaughter
wassap- doctors said some babies fight and some do not. Ours came out angry, squawking and kicking.
plex thought.
lungs look like scrawny
sticky lungs from collapsing.
lings compared to the full, bushy trees of normal
A respiratory technician was prepping the venborn.
interviewed
people
who
took
care of
her
lungs. Its
bones are
soft. It swallows.
Its hair
and
tilator andI
a neonatologist
and a nursethe
practitioand bruises on her body. Tubes snaked out of her
eyelashes are just starting to grow and its fingerner were studying the chart. When Gwen had
her belly button, her hand. Wires moored
nails
and
fingerprints
are
just
forming.
Its
body
everything
ready,
she
stepped
to
the
doorway
to
about
the scientific and ethical
challenges of trying mouth,
her to monitors. Tape obscured her face. Her chin
is covered with a soft protective down. It is recogwatch the C-section.
ABOUT THE JOURNALISTS
long and narrow, her mouth agape because
human, but barely.
Some of what happened next would be out of
to
save babies born so soon.nizably
I pored
over her medical was
Kelley Benham French, 38, has been a
of the tubes. Dried blood crusted the corner of
I was still in recovery when Tom returned from
her control. Some babies came out fighting and
writer
and editor at the Times since 2003.
her mouth and the top of her diaper. The diathe NICU, crying.
some did not. You never know what’s coming out
She is the winner of a number of national
chart
and
read dozens of journal
onHisextreme
per was smaller than a playing card, and it swal“She’s soarticles
perfect,” he said.
voice was a
of that belly,
she thought.
awards
for her writing, including the Ernie
lowed her. She had no body fat, so she resembled
squeak. “She’s so beautiful.”
Pyle Award for Human Interest Writing and
a shrunken old man, missing his teeth. Her skin
I just stared
My sweet, emotional
husprematurity. I learned the things
theat him.
doctors
had been
THE
STORK
TEAM:
When
our
baby
was
born,
a
special
team
was waiting
inedited
the delivery room to
the National
Headliner
Award. She
was nearly translucent, and through her chest I
band, in the grip of something terrifying and overfelt a sickening tug. I knew that we were two
two series that were finalists for the Pulitzer
her flickering
heart. nurse Gwen Newton, along
whelming. He’d
beenbeen
to a place Itoo
couldn’t
fathom. tocould see
people
now.
stabilize
her.
Stork
with
a
neonatologist,
a
nurse
practitioner and
tooseparate
kind
to
tell
us,
and
the
things
I’d
dazed
Prize: “Winter’s Tale” in 2009 and “For Their
She kicked and jerked. She stretched her arms
“That’s my baby girl up there,” he kept saying.
“She’s kicking,” Tom said. He was peering
Own
Good” innurse.
2010. They warmed her, put her on a
wide, palms
open, as if in
welcome or
surrender.
“That’s my daughter.”
a
respiratory
therapist,
took
the
baby
from
the
delivery
over the surgical drape at the gaping red meat of
comprehend.
Cherie Diez has worked at the Times for
I recognized her. I knew the shape of her head
my abdomen, and at the creature that had just
vitalthesigns
andofwhisked her
tothan
the 20
NICU
in Many
a mobile
In this photo,
more
years.
of herincubator.
stories
and theventilator,
curve of hertook
butt.her
I knew
strength
emerged from it. Someone said she cried, but I
When
the
doctors
stalled
my
labor,
they
gave
us
a
have
won international awards, including
her kick.
I knew
how
sheGwen
had fitdelivers
inside me,
and new baby to
didn’t hear it. I tasted prune vomit in my mouth.
used to imagine what I would say to her
taken
this
fall,
another
the NICU.
top honors in both Pictures of the Year and
felt an acute sensation that she had been cut out,
Pretty soon someone slipped a piece of paper
when I first saw her. She’d be wrapped in a
National Press Photographers competitions.
and of how wrong that was.
in front of
me, and an inkof
pad, hope,
and asked for
a
blanket
and wearing a Our
hat, andbaby
she’d feel
slim
measure
but
no
assurances.
In 1997 she collaborated with Thomas
I had crazy thoughts. Should we prepare a birth
fingerprint. On the paper were two still-wet footsolid in my arms, like a puppy. She might open one
French to produce “Angels and Demons,”
announcement?
What
would
we
name
her?
If
she
prints,
each
an
inch
and
a
half
long.
Startling
evieye
and
peek
up
at
me,
perplexed
but
curious.
She
could
die quickly, could diewould
slowly,
could suffer need-died, would we get a birth certificate? Would there
the Pulitzer Prize-winning series on the
dence that she was here.
know my voice and my smell, know I was
tried to discharge me. “Your
baby is not viable,” he
murder of an Ohio mother and her two teen
be a funeral? Would we get a box of ashes, and if so,
“My baby,” I kept saying, “my baby, my baby.”
her mother, and because she knew that, she would
lessly,
live vegetatively.
could
broken
daughters in Tampa Bay.
Gwen tookcould
the tiny blood-spotted
bundle from
not be She
afraid. I’d
be hit withbe
a force
that would in what size box? Was she aware of us? Did she recog“soher?
you
might
nize mesaid,
like I recognized
Was she
afraid? Didas well deliver at home.”
the delivery nurse. She unwrapped her, laid her
unmake me and remake me, right there.
any
of her
her
or mind.
she wonder where I had gone? If she ever got out of
on heatpocket
packs, and slipped
intobody
a plastic bag
Instead I waited in recovery while she fought for
STORY ONLINE
Byshethe
23rd
week, I wasTHE
taunted
by that incessant
this box, would
know I was
her mother?
up to her neck to help prevent heat and fluid
her life somewhere beyond my reach. After seven
Scan this code with
She was alien and familiar. She was terrifying
loss.
Gwen would
rubbed and dried
her likesquawking
a mother
hours Tom
took me
up toworld
the NICU in aunfinwheelchair,
She
come
into
the
your
mobile
device
to
and beautiful.
She was on
complete
andhospital
interrupted.
cat roughs up a kitten, but more gently, so as not
still in my cotton surgical gown, lugging an IV pole.
lullaby
the
loudspeaker,
a reminder of how
see our online coverage
I felt the icy hush that comes with looking at a
to tear her skin. The baby was dusky blue, then
Tom pushed my wheelchair up to the deep sink
ished
and
vulnerable.
Conceived
artificially,
she
would
at
tampabay.com/
secret you are not meant to see. I was peeking into
dark red. Gwen pinched the tiny greenish umbilso I could scrub my hands. There were posted
natural this process was supposed
to be. Nothing about
neverletgo. You will
God’s pocket.
ical cord between her thumb and forefinger and
instructions and a disposable scrub brush and
find photo galleries,
have
toShegrow
womb.
would
reveal
“You can touch her,” Gwen said.
felt it throb.
counted 17in
beatsan
in sixartificial
seconds.
I felt
determinedShe
to do it properly,
for the
full 30
multimedia,
resources,
it
had
been
natural
for
me.
To
get
this
far had taken
I
reached
in
through
the
porthole.
I
saw
how
“Heart rate is 170,” she called out. It was strong,
seconds, in the hottest possible water, as if precise
places to share reactions, personal
a good
compliance
the rules might tip
the odds.
to
ussign.the wonders of medicine
andwithscience,
and
the white and swollen my hand was. I let it hover
experiences
and
more.
over herfour
for a second,
then pulled
away, as if from four in-vitro procedures, an egg
The baby was trying to breathe but her lungs
I saw her plastic box halfway across the room.
years,
$40,000,
a fire. Finally I placed the tip of my pinky into her
were not ready
and her muscles
were weak.
I didn’t see anything
else,us
just this
tunnel
of space
limits
of those
things.
She would
show
the
ferocity
INFOGRAPHIC
tiny palm.
Through the stethoscope her breathing sounded
and time and of everything changing that marked
donor,
lawyers,
counselorsPREEMIES
and contracts.
Now my
She grabbed on.
squeaky and coarse. A respiratory technithe distance between us. Here I was one person and
Scan this code with your
of
most
primal
cianour
threaded
a tube the
size of thickinstincts.
spaghetti
there I would become someone else. The soap was
mobile device to view
body
trying
to spit outandthe
baby we’d made. It felt
through her mouth and into her chest. Into the
hard to rinse, and I let the water run for a long time.
Kelley Benham
can bewas
reached at
benham@tampabay.
share the graphic.
Ashesci-fi
baby
inthatanwould
engineered
world,
she’d
tube
placed the
milky fluid
coat
Tom wheeled
me to her
portholedteach
plastic box.me,
com or (727) 893-8848.
You may also find and
like biological mutiny. share this graphic at
the baby’s lungs. She connected her to a small
The nurse introduced herself as Gwen, but I
portable ventilator
that delivered oxygen
at a what
barely heard
her. There, through
plastampabay.com/
against
all possible
odds,
it means
to betheaclearmom.
WEDNESDAY:
In a neverland anchored
of sick babies
constant pressure, and tapped her finger over a
tic, was my daughter. She was red and angular,
neverletgo.
I
stayed
to
the
hospital bed by a strap
hole in the tube to pace the breaths. The baby’s
angry like a fresh wound. She had a black eye
NEXT SUNDAY: Calculating the value of a life
around my belly that charted the volcanic activity
The Baby Place at Bayfront Medical Center is dewithin on a computer monitor. The contractions came
signed for celebrations. The rooms are private, with
and went, and when they got bad enough, the doctors
sleeping couches and flat screen TVs. Sliding panels
stalled the labor by elevating my feet above my head
obscure all evidence of the mess and peril of birth.
and flooding me with magnesium sulfate, which made
Mothers are wheeled out holding fat drowsy newme feel like my blood and skin were on fire. That’s
borns, dutiful dads follow with the balloons. Every
how I was - inverted, scalding - when doctors concedtime a baby is born, the loudspeaker carries the tined the baby was coming soon, and a neonatologist viskling of a lullaby.
ited to advise my husband and me of what lay ahead.
It’s easy to pretend, in that cozy place, that all babies
Dr. Aaron Germain was thin and kind, with a look of
come wailing into the world pink and robust, and are
constant worry. I viewed him as an ambassador from
bundled and hatted and handed to teary mothers and
the Land of Sick Babies, a place I could not imagine.
proud dads. But sometimes it doesn’t go that way at
He told us he knew how badly we wanted our child,
all. That’s why behind the sliding panels there are
and an army of specialists with the most advanced
devices for oxygen, suction and epinephrine. That’s
technology was ready upstairs to try to save her life.
why there’s a morgue on the ground floor. That’s why
But we needed to decide whether saving her was
Bayfront’s labor and delivery unit is actually housed
what we really wanted. The effort would require
across the street, inside All Children’s Hospital. When
months of aggressive intervention, and could leave us
a baby is born in trouble, as mine was bound to be, it
with a child who was alive, but very damaged.
is already in the place that cares for some of the sickFew doctors would insist on intervening. The choice
est and most fragile children in the state.
was ours to make.
After the day I almost lost the baby, the doctors
He went through the list of possible calamities, each
made it clear that for now I had one purpose in life:
with its own initials. IVH, PVL, RDS, CLD, ROP, CP.
Stay pregnant. In their calmest and firmest bedside
The magnesium sulfate burned through me, sucking
voices the doctors said I had to make it another month
the will from every cell. Blood in the brain. Hole in
VIGIL:
I saw
my daughter loosely
for the first timeconsidered
when she was about seven
old, when
husband, Tom, wheeled me to her bedside. She was dwarfed by technology. I knew the doctors had had no choice but
to
24
weeks,
thehours
limit
ofmyhuman
to deliver her, and that they were doing all they could to save her, but I kept thinking how wrong it was that she’d been
cut from
my bodyRespiratory
before she was ready. I wanted
to put her Chronic
back inside, to keep
her safe.
the
heart.
distress.
lung
disease.
viability outside the womb. Deliver earlier than that,
Ventilator. Wheelchair. Blind. Deaf. Developmental
and
I would
watch my baby struggle and die.
ABOUT
THIS STORY
delays.
Autism.
Seizures.
Cerebral palsy.
All of my recollections in this story have been verified with the people involved, with photos and video taken at the time, and
with thousands
of pages of medical
records. I
Irelied
layon still
in bed
and
theThomas
calendar
as my
also
my own journal
entries and
noteswatched
taken by my husband,
French, a journalist
and author. To supplement my understanding of extreme prematurity, I
partScenes
of forher
interviewed doctors, bioethicists and epidemiologists, I talked to other parents of micropreemies, and I read dozens of journalEvery
articles and books.
whichwas
I was notunderdeveloped, fragile and
present, such
as Gwen Newton’s
of our baby,then
were described
by the people who
present and verified by medical records. The statistic in the top
baby
survived
toresuscitation
21 weeks,
22. toImechecked
inwereand
of the story about the number of babies born at the edge of viability comes from the National Center for Health Statistics’ U.S.
birth certificate
data from
2006, supplied by would exact a toll. She might
weak.
Every
treatment
Harvard
epidemiologist
Tyler J. VanderWeele
. The statistics
by Dr. Aaron
Germain
the Eunice Kennedy Shriver National Institute of Child Health and Human
out
of
the hospital
twice,
andcited
then
back
in.areIfrom
Googled
Development Neonatal Research Network. Times researcher Natalie Watson contributed to this report. Times photographer
Cheriebut
Diez was
at the hospital
on thelikely
day our
live,
she
would
have, to use the medical
baby was born as a friend of the family. Only much later did she and I return to the hospital as journalists.
images
of
half-formed
babies.
I
bled
and
cramped.
For more detailed information about sources and research, go to tampabay.com/neverletgo.
term, profound morbidities.
One tactless doctor made the situation plain when he
A
CHERIE DIEZ | Times
I
I
CHERIE DIEZ | Times
Odds she would die, no matter how hard they tried:
better than half.
Odds she would die or be profoundly disabled: 68
percent.
Odds she would die or be at least moderately disabled: 80 percent.
There was a 20 percent chance she could live and
be reasonably okay. I pictured her in the slow class
at school, battling asthma or peering through thick
glasses. We would buy her pink sparkly ones and tell
her they were cool.
I contemplated that figure: 20 percent. It didn’t seem
hopeless. Then again, imagine a revolver with five
chambers. Now put four bullets in it and play Russian roulette. Would we bet on a 20 percent chance if
losing might mean losing everything we cared about?
Would we torture our baby with aggressive treatment
just so she could live out her life in a nursing home or
on a ventilator? Would we lose our house? Would our
marriage fall apart?
Dr. Germain gamely counseled us as we searched for
loopholes in the statistics. Girls do better than boys, he
said, but white babies like ours fare worse than black
babies. Our daughter would be delivered by C-section
so her body didn’t get mangled in the birth canal, and
I would be injected with steroids before she was born
to strengthen her lungs. But the figures the doctor had
given us already accounted for those advantages.
But what were the odds, we wanted to know, for a
middle-class girl baby with good parents, who sing
songs and read stories? With two big brothers and
aunts and uncles and a friendly, big-eared dog? The
baby who slumbered inside me, her heartbeat galloping along over the speakers, reminding us that she was
perfectly fine in there, and safe, and how wrong it was
that soon she would be wrenched into the bright, cold
air, and made to breathe?
Dr. Germain spoke softly and didn’t rush. I wanted
to shake him and his probabilities, to make him yelp
and tell us what to do.
He just couldn’t say. The answers we wanted
weren’t in the data.
“The statistics don’t matter,” he said, “until they
happen to you.”
What echoed in my head was something Dr. Ger-
main never said: Saving her might be the most selfish
act in the world.
After the doctor left, my husband sat on the edge
of the bed and held my hand as we tried to work our
way toward a decision. I started with shedding my
expectations. We were a family of high achievers. My
husband, Tom French, was a Pulitzer Prize-winning
writer. His two sons, Nat and Sam, were salutatorian
and valedictorian, respectively, at Gibbs High. Now
they were off at college. We had envisioned a similar
path for our daughter - horseback riding, piano lessons
and the dean’s list. All that was gone now, and we
grappled with the fundamentals. Would we try to keep
her alive? If she lived, would she walk or talk? Would
she one day give us a look that said, Why did you put
me through this?
People always ask me if I prayed. I prayed the way
people in foxholes are said to pray. I prayed with
every thought and every breath. And I prayed with the
certainty that I had no business praying, that I hadn’t
earned the right. I’d never been religious. Worse, I
knew we had defied the natural order in our determination to have a child. Through so many in-vitro
procedures, with so many tests and needles and vials
of drugs, we’d created life in a petri dish. To be given
a child just long enough to watch her die felt like punishment for our hubris.
I was crying when I asked Tom, “Did we want her
too much?”
I don’t remember sleeping that night. As dawn crept
closer, we both swallowed the thing we couldn’t say. I
knew once I said it our baby would be gone, and we’d
be the parents who’d turned our backs. Tom climbed
in next to me on the skinny bed and wrapped his arms
around me and all of the wires as best he could.
“I don’t know how to do this,” he said.
Our baby’s heart kept beating. I held out my iPhone
and used its voice recorder to capture the sound, in
case it was the only evidence of my daughter I would
ever have.
I’m here, it seemed to be telling us. I’m still here.
Google was of no use. The research was confusing
and out of date. The blogs and news sites trumpeted
miracle babies but offered little nuance or detail. Noth-
THE ODDSMAKER AND THE OPTIMIST: Dr. Aaron Germain, left, visited my husband and me in the hospital before our daughter was born to prepare us for the long odds she faced. The next day,
nurse practitioner Diane Loisel, above, counseled us about the medical challenges ahead, then helped us find a way forward. Here, in photos taken this fall, they work with other babies and
families at All Children's Hospital. Thirteen percent of babies born in Florida in 2011 were premature.
ing we read reflected the agony and complexity of the
situation we faced.
The next day, a second counselor arrived from the
neonatal intensive care unit. Nurse practitioner Diane
Loisel found us still choking on indecision and grief.
Diane had a relaxed, no-makeup look, a contrast to
the crisp, professional bearing of the neonatologist.
Given the stakes, I thought, could we get another doctor in here? As soon as she started to talk, I felt foolish. She was so straightforward and so patient, it was
clear that her only priority was our baby.
Diane told us she had worked with small and sick
babies for 30 years. When she started, 23 weekers
never made it out of the delivery room. Any baby
born weighing less than 1,000 grams - about 2 pounds
- was considered not viable and allowed to die. But
now science had advanced, raising new questions for
everybody.
Some parents insisted the doctors do everything possible, and then insisted on the impossible too. Diane
told us it sometimes made her angry to see tiny babies
subjected to futile intervention, to see them go into
nursing homes or to families ill equipped to care for
them. The more educated parents asked more questions, considered quality of life. Diane often wondered
if asking parents to make such life-and-death decisions
was cruel.
When it came to babies born at 23 weeks, research
showed, there was little consensus from one hospital
to the next or even among doctors working the same
shift in the same unit.
Some were born limp and blue, and some came out
pink and crying. In those first hours and days, much
could be revealed. And there was a window of time,
while the baby was on a ventilator and still very fragile, when doctors and families could reverse course
and withdraw life support.
“You don’t have to decide right now,” she said. “It’s
a process.”
She seemed to be offering an escape from the torment we had suffered all night. Enough of the unbearable coin toss. We could let them intervene and see
how it went. If our baby was born too weak, we could
decide later to let her go.
“We don’t want her to suffer,” Tom said. “But we
want our baby to have a chance.”
As Diane headed back to the NICU, she told me
later, she knew she had changed everything. She also
knew that once a mother had seen her baby for the first
time, there often was no turning back. She hoped we
wouldn’t blame her for the rest of our lives.
Another day went by. I imagined my baby gathering
a few more air sacs in her budding lungs, a few more
ripples in her developing brain. Every hour was crucial, but how many would be enough?
Tom and I discovered it was impossible to stay
miserable around the clock. We amused ourselves by
speculating about the romantic lives of the doctors and
nurses. One doctor looked like a lost Kennedy. Another one - I called him Dimples - kept the nurses laughing. We could hear them out in the hall. Our favorite
was a glossy-haired nurse we called Cupcake who
wore Grey’s Anatomy label scrubs. I imagined all of
them screwing in supply closets and gossiping at the
nurses’ station. One of the doctors, while sketching a
diagram of the untenable situation in my uterus, asked
if I had any questions.
“Just one,” I said. “Is it me or are the people on this
floor unusually hot?”
“Yes,” he said, “and thank God for it.”
All of these people had been between my legs, and I
was too wrecked to care. The absurdity of it made me
laugh, even though laughter was discouraged while on
bed rest.
That afternoon we watched DVDs and allowed ourselves to hope the doctors were wrong and we would
make it another week. As soon as the sky darkened
outside the window, I tried to sleep, to make the day
end before anything could ruin it.
Still tethered like Gulliver by IVs and wires, I
shifted left, then back to the right. Adjusted the bed up
and back down. Stole my husband’s pillow and asked
the nurse for extra blankets. A vague sense of unease
settled in and I shut my eyes and willed it away. The
monitor registered no unusual activity.
When the nurse came in for yet another blood pressure, I told her I felt strange.
Constipation, she said.
At first it was uncomfortable. Then it started to hurt.
The monitor mocked me with its refusal to acknowledge what I was feeling. I kept moving the straps
around, trying to pick up the signal, then gave up and
tossed them all off. I paced the floor, clutching an IV
pole, setting off alarms at the nurse’s desk.
I had a prescription for morphine, but the nurse
stuck to her constipation theory and refused to give me
any pain relief at all. I cramped for hours until she sent
my husband on a 2 a.m. trek through St. Petersburg in
search of prune juice. By the time Tom returned with
a 64-ounce bottle, I was screaming on the bathroom
floor.
The pain was sharp and low and I could feel the
baby kicking with both feet like a mule trying to take
down a barn door. “Please,” I told the baby. “Be still.”
The nurse appeared in the doorway. “What would it
feel like if there were feet coming out of me?” I asked
her. “Because that’s what this feels like.”
“No, honey,” she assured me. “That’s not what’s
happening.”
A doctor finally checked just before dawn. I was
sobbing and gulping air. I asked him if he could put
me in a coma, and make it all stop, and wake me up
in a couple of months when the baby was bigger. Or
maybe he could sew me shut. Or hang me upside
down. He pulled on his gloves and told me to be still
and to breathe.
“Please be careful please be careful please be careful.” I couldn’t get my breath. “Please be careful.”
He reached in and felt the baby’s feet, just where I
knew he would find them.
A second doctor confirmed it. “We have to go now,”
she said.
We’d made it 23 weeks and six days.
I watched the ceiling roll by as nurses whisked me
on my hospital bed to Operating Room 4. Doctors
debated whether there was time for anesthesia, then
someone rolled me over and put a needle in my spine
and the pain washed away.
4 | Sunday, December 9, 2012 | Tampa Bay Times
SSB
never let go: PART ONE
most mornings, she needs a good jolt of coffee to
get going. But today, all it took was a look at her
assignment sheet: 23 weeker.
When she was pregnant with her son, she said,
she had nightmares that he was born at 23 weeks.
She readied a mobile incubator that would
keep the baby warm and monitored on the short
ride to the NICU. She made a nest of blankets and
spread a pillowcase over it to catch the blood.
The baby’s arm would be so small she’d use a rubber band for a tourniquet. She got out a No. 1 blood
pressure cuff, small enough to fit around her finger.
She set the warmer to 37 degrees Celsius, laid out
catheters for IVs and wires for monitors. She drew
a mixture of sugar and dextrose in a 60 mL syringe
— a snack to get the baby started. And she drew 1.4
mL of an artificial lung surfactant — a milky mix of
fats and proteins that would help prevent the baby’s
sticky lungs from collapsing.
A respiratory technician was prepping the ventilator and a neonatologist and a nurse practitioner were studying the chart. When Gwen had
everything ready, she stepped to the doorway to
watch the C-section.
Some of what happened next would be out of
her control. Some babies came out fighting and
some did not. You never know what’s coming out
of that belly, she thought.
www.tampabay.com/neverletgo
chest heaved mechanically.
She weighed 570 grams — 1 pound, 4 ounces.
She was
11.4 inches
long — the length
of a BarIf I’d been able to sit up and
look
around,
I would
bie doll.
I saw Gwen roll the incubator past. Inside was
have seen a group from the aNICU,
called
Stork
raw dark creature,
a blur inthe
a too-big
hat. My
looked at me and looked at the baby.
Team, preparing to stabilizehusband
the
baby
in
a
room
next to
“Go with her,” I said. “Please go.”
the O.R.
baby at 23 weeks’ gestation has just begun
hear, but can’t
yet see.
It mayday.
recogGwen Newton was the Stork tonize
Team
nurse
that
its mother’s voice. It has a dawning awareness of whether it is right side up or
FLYWEIGHT: Our baby was bruised by the delivery and emerged looking like a wasted prizefighter.
She described it all for me later.
She
saidof most
upside down.
The surface
its brain ismornsmooth,
Extremely preterm babies like her are vulnerable in every system of their bodies. Her immature brain,
just beginning to develop the hills and valleys
lungs and intestines were all at risk of bleeding and scarring. Her eyes were fused shut; a mask
ings, she needs a good jolt of
coffee
to and
getfolds.going.
that become
wrinkles
It respondsBut
to
protected them from the lights correcting her jaundice. Her skin, thin like papyrus, easily tore. The
pain, but has no capacity for memory or for comdoctorsFLYWEIGHT:
said some babies
fight and
do not.
out angry,
squawkinglooking
and kicking.
Our baby
wassome
bruised
byOurs
thecame
delivery
and emerged
like a wasted prizeplex
Its lungs look like scrawny
saptoday, all it took was a looklings
atthought.
her
assignment
sheet:
compared to the full, bushy trees of normal
fighter. Extremely preterm babies like her are vulnerable in every system of their bodies. Her
lungs. Its bones are soft. It swallows. Its hair and
23 weeker.
immature
brain,Tubes
lungs
and out
intestines
and bruises
on her body.
snaked
of her were all at risk of bleeding and scarring. Her eyes were
eyelashes are just starting to grow and its fingerher belly button, her hand. Wires moored
nails and fingerprints are just forming. Its body
fused
shut; a mask protected them from the lights correcting her jaundice. Her skin, thin
When she was pregnant with
her
shedown.
said,
she mouth,
her to monitors. Tape obscured her face. Her chin
is covered
with ason,
soft protective
It is recogABOUT THE JOURNALISTS
was long
narrow, her
mouth
agape
nizably human, but barely.
likeandpapyrus,
easily
tore.
Thebecause
doctors said some
babies fight and some do not. Ours came out
Kelley Benham French, 38, has been a
of the tubes. Dried blood crusted the corner of
I was stillat
in recovery
when Tom returned from
had nightmares that he was born
23 weeks.
writer
and editor at the Times since 2003.
angry,
anddiaper.
kicking.
her mouth
andsquawking
the top of her
The diathe NICU, crying.
She is the winner of a number of national
per was smaller than a playing card, and it swal“She’s so perfect,”
he said. His keep
voice was a
She readied a mobile incubator
that
would
awards
for her writing, including the Ernie
lowed her. She had no body fat, so she resembled
squeak. “She’s so beautiful.”
Pyle Award for Human Interest Writing and
a shrunken old man, missing his teeth. Her skin
I just stared at him. My sweet, emotional husthefeltbaby
warm
and
monitored
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ride
to
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the National Headliner Award. She edited
was nearly translucent, and through her chest I
band, in the grip of something terrifying and overa sickening tug. I knew that we were two
I felt a sickening tug. I knew
two sepatwo series that
that werewe
finalistswere
for the Pulitzer
see her flickering heart.
whelming. He’d been to a place I couldn’t fathom.
separate people now.
Prize: “Winter’s Tale” in 2009 and “For Their
NICU.
She made
nest
and
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“That’s my baby
girl upspread
there,” he keptasaying.
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Tom said. Heawas
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Own
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in
2010.
rateopen,people
now.
wide, palms
as if in welcome
or surrender.
“That’s my daughter.”
over the surgical drape at the gaping red meat of
Cherie Diez has worked at the Times for
I recognized her. I knew the shape of her head
my abdomen, and
at the creature
had justthe blood.
lowcase
over
it to that
catch
more than
of her stories over the
and the curve
of her butt.kicking,”
I knew the strengthTom
of
emerged from it. Someone said she cried, but I
“She’s
said.
He20 years.
wasManypeering
have
won international awards, including
her kick. I knew how she had fit inside me, and
didn’t
hear it.
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vomit inwould
my mouth. be soused
to imagine
what I would
her
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baby’s
arm
small
she’d
usesaya torubber
top honors in both Pictures of the Year and
felt an acute
sensation
that
she
had
been
cut
out,
Pretty soon someone slipped a piece of paper
when I first saw her. She’d be wrapped in a
surgical drape at the gaping
red meat of my abdomen,
National Press Photographers competitions.
and of how wrong that was.
in front of me, and an ink pad, and asked for a
blanket and wearing a hat, and she’d feel
band
for
apaper
tourniquet.
She got
a like
No.
1 She
blood
presIn 1997 she collaborated with Thomas
I had crazy thoughts. Should we prepare a birth
fingerprint.
On the
were two still-wet footsolid inout
my arms,
a puppy.
might open
one
and
at
the
creature
that
had
just
emerged
French to produce
“Angels andfrom
Demons,” it.
announcement? What would we name her? If she
prints, each an inch and a half long. Startling evieye and peek up at me, perplexed but curious. She
the Pulitzer Prize-winning series on the
sure
cuff,
small enough to fit
around
her
finger.
She
died, would we get a birth certificate? Would there
dence that
she was here.
would
know my voice
and my
smell, know
I was set
she
butof anI Ohio
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hear
mother and
her twoit.
teen I tasted
be a funeral?Someone
Would we get a box ofsaid
ashes, and
if so, cried,murder
“My baby,” I kept saying, “my baby, my baby.”
her mother, and because she knew that, she would
daughters in Tampa Bay.
what size box? Was she aware of us? Did she recogGwen
took the tiny blood-spotted
bundle from Celsius,
not be afraid. I’d
be hitout
with a catheters
force that would
the
warmer
to 37 degrees
laid
nize meprune
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her?
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she
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the delivery nurse. She unwrapped her, laid her
unmake me and remake me, right there.
vomit in my mouth.
on heat
packs, and
and slipped
her intofor
a plastic
bag
InsteadShe
I waiteddrew
in recovery a
while
she fought for ofshe wonder where I had gone? If she ever got out of
THE STORY ONLINE
for
IVs
wires
monitors.
mixture
this box, would
she know Isoon
was her mother?
up to her neck to help prevent heat and fluid
her life somewhere beyond my reach. After seven
Pretty
someone slipped
a piece
of paper in
Scan this code
with
She was alien and familiar. She was terrifying
loss. Gwen rubbed and dried her like a mother
hours Tom took me up to the NICU in a wheelchair,
your mobile device to
sugar
and
dextrose
inso asanot60 mL
syringe
a snack
cat roughs up
a kitten,
but more gently,
still in my
cotton surgical-gown,
lugging an IVto
pole.get and beautiful. She was complete and interrupted.
see our
onlineasked
coverage for a fingerfront
and
anat ink
pad,
and
I felt the
icy hushof
that me,
comes with
looking
a
to tear her skin. The baby was dusky blue, then
Tom pushed my wheelchair up to the deep sink
at tampabay.com/
the
baby
started.
Andumbilshe drew
1.4
of There
an artifisecret you are not meant to see. I was peeking into
dark red.
Gwen pinched
the tiny greenish
so I could
scrubmL
my hands.
were posted
neverletgo.
You will
print. On the paper were two
still-wet
footprints, each
God’s pocket.
ical cord between her thumb and forefinger and
instructions and a disposable scrub brush and
find photo galleries,
“You can touch her,” Gwen said.
felt it throb.
She counted
17 beats in six seconds.
I feltmix
determined
tofats
do it properly,
for
the full 30
cial
lung
surfactant
a
milky
of
and
proteins
multimedia,
resources,
I reached
throughand
the porthole.
I saw how
“Heart rate is 170,” she called out. It was strong,
seconds, in the hottest possible water, as if precise
an ininch
a half
long. Startling
places to shareevidence
reactions, personal that she
and swollen my hand was. I let it hover
a good sign.
with the rules might tip the odds.
that
would help prevent thecompliance
baby’s
sticky lungs from white
experiences and more.
over her for a second, then pulled away, as if from
The baby was trying to breathe but her lungs
I saw her plastic box halfway across the room.
was here.
a fire. Finally I placed the tip of my pinky into her
were not ready and her muscles were weak.
I didn’t see anything else, just this tunnel of space
collapsing.
PREEMIES INFOGRAPHIC
tiny palm.
Through the stethoscope her breathing sounded
and time and of everything changing that marked
“My
She
grabbed
on. baby,” I kept saying,
squeaky and coarse. A respiratory technithe distance between us. Here I was one person and
Scan“my
this codebaby,
with your my baby.”
cian
threaded
a tube the size technician
of thick spaghetti was
there I would
become someone
else.ventilaThe soap was
A
respiratory
prepping
the
mobile device to view
through her mouth and into her chest. Into the
hard to rinse, and I let the water run for a long time.
Kelley Benham
can be reached
at benham@tampabay.
Gwen
took
the tiny blood-spotted
bundle from the
and share the graphic.
tube she
placed
milky fluid that would coat
wheeled me
to her portholed plastic
box.
com or (727) 893-8848.
You may also find and
tor
and
atheneonatologist
and The
aTomnurse
practitioner
were
the baby’s lungs. She connected her to a small
nurse introduced herself as Gwen, but I
share this graphic
at laid her on heat
delivery
nurse.
She
unwrapped
her,
portable ventilator that delivered oxygen at a
barely heard her. There, through the clear plastampabay.com/
studying
chart.
When
had
everything
ready,WEDNESDAY: In a neverland of sick babies
constant pressure,the
and tapped
her finger
over a Gwen
tic, was my
daughter.
She was red and angular,
neverletgo.
packs, and slipped her into a plastic bag up to her
hole in the tube to pace the breaths. The baby’s
like a fresh wound. She had a black eye
she
stepped to the doorwayangry
to watch
the C-section. NEXT SUNDAY: Calculating the value of a life
neck to help prevent heat and fluid loss. Gwen rubbed
Some of what happened next would be out of her
and dried her like a mother cat roughs up a kitten,
control. Some babies came out fighting and some did
but more gently, so as not to tear her skin. The baby
not. You never know what’s coming out of that belly,
was dusky blue, then dark red. Gwen pinched the
she thought.
tiny greenish umbilical cord between her thumb and
forefinger and felt it throb. She counted 17 beats in six
A
CHERIE DIEZ | Times
I
I
CHERIE DIEZ | Times
VIGIL: I saw my daughter for the first time when she was about seven hours old, when my husband, Tom, wheeled me to her bedside. She was dwarfed by technology. I knew the doctors had had no choice but
to deliver her, and that they were doing all they could to save her, but I kept thinking how wrong it was that she’d been cut from my body before she was ready. I wanted to put her back inside, to keep her safe.
ABOUT THIS STORY
All of my recollections in this story have been verified with the people involved, with photos and video taken at the time, and with thousands of pages of medical records. I
also relied on my own journal entries and notes taken by my husband, Thomas French, a journalist and author. To supplement my understanding of extreme prematurity, I
VIGIL:
I sawdoctors,
my daughter
forand
theepidemiologists,
first time when
shetowas
hours old,and
when
mydozens
husband,
Tom,
wheeled
me toScenes
her bedside.
interviewed
bioethicists
I talked
otherabout
parentsseven
of micropreemies,
I read
of journal
articles
and books.
for which She
I waswas
not dwarfed by technology. I knew the doctors had had
such as Gwen Newton’s resuscitation of our baby, were described to me by the people who were present and verified by medical records. The statistic in the top
nopresent,
choice
tothedeliver
her,
and that
allcomes
theyfrom
could
save her,
butforIHealth
kept thinking
howbirth
wrong
it was
that
cutbyfrom my body before she was ready. I wanted to put her
of the
storybut
about
number
of babies
bornthey
at the were
edge ofdoing
viability
theto
National
Center
Statistics’ U.S.
certificate
data
fromshe'd
2006, been
supplied
Harvard
epidemiologist
Tylersafe.
J. VanderWeele. The statistics cited by Dr. Aaron Germain are from the Eunice Kennedy Shriver National Institute of Child Health and Human
back
inside,
to keep her
Development Neonatal Research Network. Times researcher Natalie Watson contributed to this report. Times photographer Cherie Diez was at the hospital on the day our
baby was born as a friend of the family. Only much later did she and I return to the hospital as journalists.
For more detailed information about sources and research, go to tampabay.com/neverletgo.
seconds.
“Heart rate is 170,” she called out. It was strong, a
good sign.
The baby was trying to breathe but her lungs were
not ready and her muscles were weak. Through the
stethoscope her breathing sounded squeaky and
coarse. A respiratory technician threaded a tube the
size of thick spaghetti through her mouth and into
her chest. Into the tube she placed the milky fluid that
would coat the baby’s lungs. She connected her to a
small portable ventilator that delivered oxygen at a
constant pressure, and tapped her finger over a hole in
the tube to pace the breaths. The baby’s chest heaved
mechanically.
She weighed 570 grams - 1 pound, 4 ounces. She
was 11.4 inches long - the length of a Barbie doll.
I saw Gwen roll the incubator past. Inside was a raw
dark creature, a blur in a too-big hat. My husband
looked at me and looked at the baby.
“Go with her,” I said. “Please go.”
A baby at 23 weeks’ gestation has just begun to hear,
but can’t yet see. It may recognize its mother’s voice.
It has a dawning awareness of whether it is right side
up or upside down. The surface of its brain is smooth,
just beginning to develop the hills and valleys that become wrinkles and folds. It responds to pain, but has
no capacity for memory or for complex thought.
Its lungs look like scrawny saplings compared to the
full, bushy trees of normal lungs. Its bones are soft.
It swallows. Its hair and eyelashes are just starting to
grow and its fingernails and fingerprints are just forming. Its body is covered with a soft protective down. It
is recognizably human, but barely.
I was still in recovery when Tom returned from the
NICU, crying.
“She’s so perfect,” he said. His voice was a squeak.
“She’s so beautiful.”
I just stared at him. My sweet, emotional husband,
in the grip of something terrifying and overwhelming.
He’d been to a place I couldn’t fathom.
“That’s my baby girl up there,” he kept saying.
“That’s my daughter.”
I used to imagine what I would say to her when I
first saw her. She’d be wrapped in a blanket and wearing a hat, and she’d feel solid in my arms, like a puppy. She might open one eye and peek up at me, perplexed but curious. She would know my voice and my
smell, know I was her mother, and because she knew
that, she would not be afraid. I’d be hit with a force
that would unmake me and remake me, right there.
Instead I waited in recovery while she fought for her
life somewhere beyond my reach. After seven hours
Tom took me up to the NICU in a wheelchair, still in
my cotton surgical gown, lugging an IV pole.
Tom pushed my wheelchair up to the deep sink so I
could scrub my hands. There were posted instructions
and a disposable scrub brush and I felt determined to
do it properly, for the full 30 seconds, in the hottest
possible water, as if precise compliance with the rules
might tip the odds.
I saw her plastic box halfway across the room. I
didn’t see anything else, just this tunnel of space and
time and of everything changing that marked the
distance between us. Here I was one person and there
I would become someone else. The soap was hard to
rinse, and I let the water run for a long time.
Tom wheeled me to her portholed plastic box. The
nurse introduced herself as Gwen, but I barely heard
her. There, through the clear plastic, was my daughter.
She was red and angular, angry like a fresh wound.
She had a black eye and bruises on her body. Tubes
snaked out of her mouth, her belly button, her hand.
Wires moored her to monitors. Tape obscured her
face. Her chin was long and narrow, her mouth agape
because of the tubes. Dried blood crusted the corner
of her mouth and the top of her diaper. The diaper was
smaller than a playing card, and it swallowed her. She
had no body fat, so she resembled a shrunken old man,
missing his teeth. Her skin was nearly translucent, and
through her chest I could see her flickering heart.
She kicked and jerked. She stretched her arms wide,
palms open, as if in welcome or surrender.
I recognized her. I knew the shape of her head and
the curve of her butt. I knew the strength of her kick.
I knew how she had fit inside me, and felt an acute
sensation that she had been cut out, and of how wrong
that was.
I had crazy thoughts. Should we prepare a birth announcement? What would we name her? If she died,
would we get a birth certificate? Would there be a
funeral? Would we get a box of ashes, and if so, what
size box? Was she aware of us? Did she recognize me
like I recognized her? Was she afraid? Did she wonder where I had gone? If she ever got out of this box,
would she know I was her mother?
She was alien and familiar. She was terrifying and
beautiful. She was complete and interrupted. I felt the
icy hush that comes with looking at a secret you are
not meant to see. I was peeking into God’s pocket.
“You can touch her,” Gwen said.
I reached in through the porthole. I saw how white
and swollen my hand was. I let it hover over her for
a second, then pulled away, as if from a fire. Finally I
placed the tip of my pinky into her tiny palm.
She grabbed on.
ABOUT THIS STORY
All of my recollections in this story have been verified with the people involved, with photos and
video taken at the time, and with thousands of pages of medical records. I also relied on my own
journal entries and notes taken by my husband, Thomas French, a journalist and author. To supplement my understanding of extreme prematurity, I interviewed doctors, bioethicists and epidemiologists, I talked to other parents of micropreemies, and I read dozens of journal articles and
books. Scenes for which I was not present, such as Gwen Newton’s resuscitation of our baby,
were described to me by the people who were present and verified by medical records. The
statistic in the top of the story about the number of babies born at the edge of viability comes
from the National Center for Health Statistics’ U.S. birth certificate data from 2006, supplied by
Harvard epidemiologist Tyler J. VanderWeele . The statistics cited by Dr. Aaron Germain are from
the Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal
Research Network. Times researcher Natalie Watson contributed to this report. Times photographer Cherie Diez was at the hospital on the day our baby was born as a friend of the family.
Only much later did she and I return to the hospital as journalists. For more detailed information
about sources and research, go to tampabay.com/neverletgo.
ABOUT THE JOURNALISTS
Kelley Benham French, 38, has been a writer and editor at the Times since 2003. She is the
winner of a number of national awards for her writing, including the Ernie Pyle Award for Human
Interest Writing and the National Headliner Award. She edited two series that were finalists for
the Pulitzer Prize: “Winter’s Tale” in 2009 and “For Their Own Good” in 2010.
Cherie Diez has worked at the Times for more than 20 years. Many of her stories have won
international awards, including top honors in both Pictures of the Year and National Press Photographers competitions. In 1997 she collaborated with Thomas French to produce “Angels and
Demons,” the Pulitzer Prize-winning series on the murder of an Ohio mother and her two teen
daughters in Tampa Bay.
THE STORY ONLINE
Scan this code with your mobile device to see our online coverage at
tampabay.com/neverletgo. You will find photo galleries, multimedia,
resources, places to share reactions, personal experiences and more.
PREEMIES INFOGRAPHIC
Scan this code with your mobile device to view and share the graphic.
You may also find and share this graphic at tampabay.com/neverletgo.