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By the time you read this, Olivia Grace Soppi-Huntley will probably be resting comfortably at home in her crib, under the watchful gaze of her mom, Sara Huntley. Exactly what you'd expect for a June baby, right? Thing is, little Olivia entered the world a few months early. Sunday, February 25, at 3:04 a.m. to be precise. She then spent the first few months of her natural gestation in an assortment of artificial wombs at the neonatal intensive care unit, or NICU, on the second floor of

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University Hospitals Rainbow Babies & Children's Hospital. The unit boasts the best survival rates for highrisk newborns in the United States, according to data from the National Institutes of Health-sponsored Neonatal Network medical centers. "No one ever wants to be a neonatologist's patient," says Dr. Jonathan M. Fanaroff, neonatologist and one of22 attending physicians in the NICU, which admits more than 1,000 newborns annually. "By definition, it means there was something abnormal."

Olivia's early arrival started the afternoon of February 24, when Sara woke from a nap to experience what she considers the most frightening moment of her first 27 years. After eating a bowl of cereal, she felt increasingly intense stomach pains, which she, still being more than three months away from giving birth, mistook for indigestion. Antacid and a piece of bread to absorb stomach acid failed to help. When the discomfort became "really horrible," she called her

NorthernOhioLive

June 2007


mother,

Joy, who

lives

up

in

heart

rate,

temperature,

rate,

oxygen

saturation

bought

her own home. Mom quickly that

grew

and

where

diagnosed

Sara

nearby

Berea,

it was time

The

to call

that fluctuate symphony

emergency

department

blood

pressure in waves and LCD numbers

the doctor. at Southwest

breathing and

staff

Hospital in l3erea deter-

sounds

constantly. An ongoing

of beeps, dings and pings-

that

resemble

car makes when

the

noises

a

you leave the door-

mined that the cause of Sara's abdom-

open - lets nurses know when some-

inal cranlps was an enlarged liver and

thing is wrong.

ill kidneys. Her blood pressure was an alarming

198 over 108. She had all of

the symptoms a condition

of HELLP

hypertension for

unknown,

which

ca use

and the only "cure"

herself on an ambulance to

about

eight

down

at

Case Medical

in University

"I learned

fingers.

found

House

Hospitals

is

racing across

MacDonald

University Center

perfectly

is to

the baby. Sara soon

town

a

in pregnant the

to suck, but her respirator

poised

tube is in

the way. She's tucked into rolled-up

mate-

rial to keep her from rolling around,

still struggle

to inhale on their own.

On a recent

Sunday, Olivia gave her

before

I did," C-sec-

mother

Olivia

moment

removed

of her mother's

She

(or one

pound,

weighed

680

eight

grams

ounces),

and

one foot. She was whisked

Rainbow's

NICU

(commonly

nick-you),

remained

at

while

herself

most frightening

in her life. While

rest skin

from

that her lungs

Sarah was

her - letting

to skin,

on her

the baby mother's

chest - Olivia yanked out the respirator tube. She stopped turned

breathing

and

blue. Sara cried quietly, trying

not to give her daughter

any indica-

tion of fear, as a team of respiratory

her

MacDonald

specialists, physicians and nurses converged almost instantly.

days, so that staff could

to her serious but temporary from which

the second

"kangarooing"

is 37 to 40

gestation

weeks).

condition,

miniature

appears

hours

tion (full-term

attend

exquisite, thumb

oxygen

womb, just 25 weeks into her gesta-

for several

her

Her

disconnect

an emergency

pronounced

to

is

detailed

the precious

the comforts

mother

vessels. Her body

proportioned,

that I was giving birth

tion, the obstetrician

to

it seems

her little mus-

accidentally

Performing

measured

revealing

and her head is braced so she cannot

Circle.

recalls Sara.

from

skin is so thin

cles and blood

related to preeclampsia,

dangerous women, remove

Syndrome,

Olivia's transparent,

she has SInce

fully recovered.

It's just

one more

up-and-down

moment

on a NICU

parent's

roller

coaster

ride. Doctors,

nurses

and a

social worker

warned

her it would

be like this, but that hasn't made

+++

any easier. "I just prepared

On a Tuesday

afternoon

in early

April, Olivia is all wrapped

up inside

an isolette, a plastic surrogate that

faintly

resembles

womb

with stations

all of whom

a

isolettes

like Olivia's, or in open plastic cribs. In place

of an umbilical

Olivia is tethered variety

120

cord,

by thin wires to a

of monitors

that

chart

a month

her

of daily

visits

with

her daughter. systems

for six neonates,

lie in covered

now," Sara says, after more

"We're

a terrarium.

She's in Nursery Two in the NICU, room

than

it

feel a little more

to work

normally

a baby's earlier

would," "So

the parents." suffered

it's

than

organ they

with

wouldn't

food. Most

her body. Her need

important,

Dr.

system

for

and her fellow neonates

who

lights

suddenly

up to wires flashing

and

strange noises, Fanaroff says, "It feels

to absorb

her immune

explains

Of the disorientation

by parents

and ventilate

stomach

need to oxy-

frustrating

find their baby hooked and tubes

In the womb, Olivia's lungs would grow, but they wouldn't genate

asking

Fanaroff.

like an alien experience."

isn't fully developed,

so she

are acutely

prone to infection. "We simulate in utero," director

try as much

as possible

environmental

says Dr. Richard of neonatology

NorthernOhioLive,

to

conditions Martin,

at Rainbow.

June 2007


"But it's a little naive to suppose we can

do

that

entirely,

the physiologic

because

demands

of

that are so

Sara's

experience

assessment

been

Eliason, a pediatric

medical team. say she's made a

sounding

Olivia's

herself by ask-

of the nurses who proprimary

care,

all of the information given,

including

Companion the

by

mother

of

er will benefit Olivia," observes Amy Rainbow

several members

ing questions reading

of her

thus far is simply "over-

great effort to inform vide

L. Madden,

J

a preemie.

of the

whelming," NICU

Susan

Parents

"Sara is very willing to do whatev-

different postnatally." While

The Preemie

and she's

her "bible,"

Olivia that under

who board

social worker

will serve

and advocate

is discharged.

she's handling

at

as Sara's until

"L'rn amazed herself

so well

all of this pressure," says Sara's

mother.joy, They're

especially impressed,

they

121


add, considering chosen

his daughter's parents

Olivia's

to be minimally

father

has

involved

in

care, despite the fact his

and sisters have all supported

Sara and Olivia. her head, Sara has taped a photo herself

with

Olivia's

doesn't

need

to

know

nurse

father.

know

of

"She

we're

not

she says. "She just needs to

that mommy

and daddy

love

her, and want her to get healthy."

corning humidity

Amanda

Olivia's baby's

In the corner of Olivia's isolette by

together,"

"She's percent

from

McGuiness,

primary thin

moisture

care

skin,

she

to evaporate

ing Olivia susceptible Her

previous

even higher 75 percent

water,

100

in the womb," says one

nurses. adds,

of

The allows

quickly, makdisbursed

concentration,

neonate

residence.

scale, because

an

roughly

It also featured

As

a

McGuiness A tiny teddy bear, Sara's first gift to her daughter,

stands

in the corner

near her feet. It's wrapped biohazard

bag

the

humidity

high

the isolette.

122

to

protect and

as a keepsake

some day. "Probably

a

to show Olivia her first

date," Sara quips. McGuiness

her thorough

com-

assessment

and

chats with Sara as they wait for the respiratory

she was too

one of the the size of a

before

team

to remove

from the ventilator,

tiny to remove for weighing.

+++

napkin,

pletes

humidity, than her current

built-in

diapers, about

This afternoon,

to dehydration.

isolette

as she is. Sara is keeping doll-size

Olivia

at least until she

needs it again. The goal is to let her lungs work for as long as possible for themselves

so they eventually

won't

primary

care

nurse,

need the mechanical

provides

regular

assess-

team was on its way, but was called off

ments of Olivia's vital stats, feeds her,

to help a new patient

changes

boy

her diapers,

and essentially

whose

stimulation.

The

in the NICU,

weight

of 500

grams

in a plastic

watches over her. Because she is now

makes

it from

able to ingest and process larger feed-

speaking,

heat

ings, there

so she

scales at 1,120 grams (or two pounds,

needs a bigger diaper. It's half as big

seven and a half ounces), nearly twice

in

is more

output,

Olivia since

seem

huge,

today

NorthernOhioLive

she

a

relatively tips

the

June 2007


her birth weight. Accordingly, Sara celebrates any such progressions, faithfully recording them in her My Early Arrival Journal, a gift from Eliason, including Olivia's minuscule feet and handprints at 38 weeks. Despite all of the tubes, wires and wrappings, Olivia will not be held down. "She's been a real wiggle worm today," McGuiness says."She's not very patient, this one." Sara remarks, "Wonder where she gets that from?" Several times, Olivia has even managed to perform a preemie push up, in which she puts her weight on her hands and sticks her butt into the air, as if trying to stand up in the isolette. Having observed these antics, Joy now calls her first granddaughter the Pilates Princess.

124

~sm3 '"

It

NorthernOhioLive

June 2007


+++ That

afternoon,

Dr.

arrives to see whether

Fanaroff

Olivia's ready

for extubation,

or removal of the ven-

tilation

tube

from

informs

Sara that the team should be

her

throat.

He

ready soon. Dr. Fanaroff is a walking, beacon

of hope

for NICU

because

he was born

into

talking parents, the very

same unit 37 years ago. The story gets better: His father, Dr. Avroy Fanaroff, is now

chairman

Rainbow, Martin,

and

struggled

olutionizing

a "godfather

when

excluded.

of they

his son

The

elder

changed all of that, revthe paradigm

tal intensive

care

for neona-

by encouraging

like Sara to spend

time with their children Olivia

Dr.

alone in a unit from which were

Fanarofflater

parents

at

in the field. The disci-

was still new

parents

with

for the advances

have pioneered pline

is, along

considered

neonatology"

of pediatrics

as much

as possible.

has also received

another

recent

innovation:

a treatment

of

inhaled

nitric

oxide to improve

her

chances

of surviving

without

chronic

piratory

problems

Martin

pre-maturity

lung disease or reslike asthma.

led the national

short-term

effects,

study on the

and

currently

completing

benefits

study. Though

Dr.

Rainbow's

the long-term still a couple

Dr. Martin says, the new NICU, augmented

diagnostic

capabilities,

will also become

el unit for other

with

and surgical

medical

a modfacilities.

"We will have a world-class

facility

that matches

of our

the reputation

staff and research Martin

states

capabilities,"

of the

unit,

Dr.

which

should open next summer.

of years away from the final results, Dr.

Martin Under

of its efficacy. Dr. Martin

Fanaroff's

and the elder

leadership,

Rainbow

recently began construction NICU art,

adjacent

44-bed

Transitional

on the fourth

transitional

unit, completed

ago, is a step-down a homey

rooms where

of a new

to the state-of-the-

Neonatal

Care Unit

vides

+++

says he is "cautiously

optimistic"

floor. The five years

facility that prosetting

neonates

in private move to pre-

By late April, Pilates - combined in reflects and-a-half switched

from

or

respirator,

CPAP,

in troduces

stay in private rooms with their chil-

for intensive

dren.

graduate gift from

Foundation,

"She's and

her 15-

011

ventilator

positive

a device

Prentiss

the

continuous gently

two-pound,

ounce gain

inch frame. She has been

little more

to a $7 million

with her NICU

a whopping

13-and-a-half

new 40-bed unit will allow parents to

Thanks

preemie

care - has paid off. Her daily weigh-

pare for discharge. When finished, the

the Elizabeth

Olivia's

which

oxygen

attached

to her

weight, support,

nose. A

and Olivia can

really turned to

more through

a little less need

to the transitional

is starting

to a

airway pressure,

do

care unit.

that corner, well,"

says

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Dr. Fanaroff. Sara, who has returned to her customer service job for a trucking company in Berea, is finally able to hold her daughter in the crook of her arm for short periods of time. Gazing lovingly into her daughter's face, which she's only seen up close a few times, Sara says,"I still hate that I can't just take her home." She plans on taking another six weeks of maternity leave when Olivia comes home. Though she's the beneficiary of all the assistance that science and medicine delivered by deeply compassionate nurses and doctors can offer, Olivia continues to display the innate tenacity that has allowed humans to prevail for thousands of years. That trait will help her thrive in the great big, unpredictable world that awaits her. •

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330.375.7722 95 Arch Street, Suite 250 Akron, OH 44304 Fax: 330.253.6706

330.452.6010 2600 West Tuscarawas, Suite 560 Canton, OH 44708 Fax: 330.454.8538

NorthernOhioLive

June 2007


Preemie Time