2. 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, mis-
took for indigestion. Antacid and a
By the time you read this, Olivia University Hospitals Rainbow Babies piece of bread to absorb stomach acid
Grace Soppi-Huntley will probably & Children's Hospital. The unit failed to help.
be resting comfortably at home in her boasts the best survival rates for high- When the discomfort became
crib, under the watchful gaze of her risk newborns in the United States, "really horrible," she called her
mom, Sara Huntley. Exactly what according to data from the National
you'd expect for a June baby, right? Institutes of Health-sponsored
Thing is, little Olivia entered the Neonatal Network medical centers.
world a few months early. Sunday, "No one ever wants to be a
February 25, at 3:04 a.m. to be pre- neonatologist's patient," says Dr.
cise. Jonathan M. Fanaroff, neonatologist
She then spent the first few and one of22 attending physicians in
months of her natural gestation in an the NICU, which admits more than
assortment of artificial wombs at the 1,000 newborns annually. "By defini-
neonatal intensive care unit, or tion, it means there was something
NICU, on the second floor of abnormal."
118 NorthernOhioLive June 2007

3. mother, Joy, who lives nearby in heart rate, temperature, breathing
Berea, where Sara grew up and rate, oxygen saturation and blood
bought her own home. Mom quickly pressure in waves and LCD numbers
diagnosed that it was time to call that fluctuate constantly. An ongoing
the doctor. symphony of beeps, dings and pings-
The emergency department staff sounds that resemble the noises a
at Southwest Hospital in l3erea deter- car makes when 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 Olivia's skin is so thin it seems
alarming 198 over 108. She had all of transparent, revealing her little mus-
the symptoms of HELLP Syndrome, cles and blood vessels. Her body is
a condition related to preeclampsia, a perfectly proportioned, detailed
dangerous hypertension in pregnant down to her exquisite, miniature
women, for which the ca use is fingers. Her thumb appears poised
unknown, and the only "cure" is to to suck, but her respirator tube is in
remove the baby. Sara soon found the way.
herself on an ambulance racing across She's tucked into rolled-up mate-
town to MacDonald House at rial to keep her from rolling around,
University Hospitals Case Medical and her head is braced so she cannot
Center in University Circle. accidentally disconnect herself from
"I learned that I was giving birth the precious oxygen that her lungs
about eight hours before I did," still struggle to inhale on their own.
recalls Sara. On a recent Sunday, Olivia gave her
Performing an emergency C-sec- mother the second most frightening
tion, the obstetrician removed Olivia moment in her life. While Sarah was
from the comforts of her mother's "kangarooing" her - letting the baby
womb, just 25 weeks into her gesta- rest skin to skin, on her mother's
tion (full-term gestation is 37 to 40 chest - Olivia yanked out the respira-
weeks). She weighed 680 grams tor tube. She stopped breathing and
(or one pound, eight ounces), and turned blue. Sara cried quietly, trying
measured one foot. She was whisked not to give her daughter any indica-
to Rainbow's NICU (commonly tion of fear, as a team of respiratory
pronounced nick-you), while her specialists, physicians and nurses con-
mother remained at MacDonald verged almost instantly.
for several days, so that staff could It's just one more up-and-down
attend to her serious but temporary moment on a NICU parent's roller
condition, from which she has SInce coaster ride. Doctors, nurses and a
fully recovered. social worker warned her it would
be like this, but that hasn't made it
+++ any easier. "I just feel a little more like an alien experience."
prepared now," Sara says, after more In the womb, Olivia's lungs would
On a Tuesday afternoon in early than a month of daily visits with grow, but they wouldn't need to oxy-
April, Olivia is all wrapped up inside her daughter. genate and ventilate her body. Her
an isolette, a plastic surrogate womb "We're asking a baby's organ stomach wouldn't need to absorb
that faintly resembles a terrarium. systems to work earlier than they food. Most important, her immune
She's in Nursery Two in the NICU, a normally would," explains Dr. system isn't fully developed, so she
room with stations for six neonates, Fanaroff. "So it's frustrating for and her fellow neonates are acutely
all of whom lie in covered isolettes the parents." Of the disorientation prone to infection.
like Olivia's, or in open plastic cribs. suffered by parents who suddenly "We try as much as possible to
In place of an umbilical cord, find their baby hooked up to wires simulate environmental conditions
Olivia is tethered by thin wires to a and tubes with lights flashing and in utero," says Dr. Richard Martin,
variety of monitors that chart her strange noises, Fanaroff says, "It feels director of neonatology at Rainbow.
120 NorthernOhioLive, June 2007

4. "But it's a little naive to suppose we The Preemie Parents J Companion by
can do that entirely, because of Susan L. Madden, the mother of
the physiologic demands that are so a preemie.
different postnatally." "Sara is very willing to do whatev-
While Sara's assessment of her er will benefit Olivia," observes Amy
experience thus far is simply "over- Eliason, a pediatric social worker at
whelming," several members of the Rainbow who will serve as Sara's
NICU medical team. say she's made a sounding board and advocate until
great effort to inform herself by ask- Olivia is discharged. "L'rn amazed
ing questions of the nurses who pro- that she's handling herself so well
vide Olivia's primary care, and under all of this pressure," says Sara's
reading all of the information she's mother.joy,
been given, including her "bible," They're especially impressed, they
121

5. add, considering Olivia's father has "She's corning from water, 100 as she is. Sara is keeping one of the
chosen to be minimally involved in percent humidity in the womb," says doll-size diapers, about the size of a
his daughter's care, despite the fact his nurse Amanda McGuiness, one of napkin, as a keepsake to show Olivia
parents and sisters have all supported Olivia's primary care nurses. The some day. "Probably before her first
Sara and Olivia. baby's thin skin, she adds, allows date," Sara quips.
In the corner of Olivia's isolette by moisture to evaporate quickly, mak- This afternoon, McGuiness com-
her head, Sara has taped a photo of ing Olivia susceptible to dehydration. pletes her thorough assessment and
herself with Olivia's father. "She Her previous isolette disbursed an chats with Sara as they wait for the
doesn't need to know we're not even higher concentration, roughly respiratory team to remove Olivia
together," she says. "She just needs to 75 percent humidity, than her current from the ventilator, at least until she
know that mommy and daddy love neonate residence. It also featured a needs it again. The goal is to let her
her, and want her to get healthy." built-in scale, because she was too lungs work for as long as possible for
tiny to remove for weighing. themselves so they eventually won't
+++ As a primary care nurse, need the mechanical stimulation. The
McGuiness provides regular assess- team was on its way, but was called off
A tiny teddy bear, Sara's first gift to ments of Olivia's vital stats, feeds her, to help a new patient in the NICU, a
her daughter, stands in the corner changes her diapers, and essentially boy whose weight of 500 grams
near her feet. It's wrapped in a plastic watches over her. Because she is now makes Olivia seem huge, relatively
biohazard bag to protect it from able to ingest and process larger feed- speaking, since today she tips the
the high humidity and heat in ings, there is more output, so she scales at 1,120 grams (or two pounds,
the isolette. needs a bigger diaper. It's half as big seven and a half ounces), nearly twice
122 NorthernOhioLive June 2007

6. 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 iso-
lette. Having observed these antics,
~sm3 '"
It
Joy now calls her first granddaughter
the Pilates Princess.
124 NorthernOhioLive June 2007

7. recent innovation: a treatment of Dr. Martin says, the new NICU, with
+++ inhaled nitric oxide to improve her augmented diagnostic and surgical
chances of surviving pre-maturity capabilities, will also become a mod-
That afternoon, Dr. Fanaroff
without chronic lung disease or res- el unit for other medical facilities.
arrives to see whether Olivia's ready
piratory problems like asthma. Dr. "We will have a world-class facility
for extubation, or removal of the ven-
Martin led the national study on the that matches the reputation of our
tilation tube from her throat. He
short-term effects, and Rainbow's staff and research capabilities," Dr.
informs Sara that the team should be
currently completing the long-term Martin states of the unit, which
ready soon.
benefits study. Though still a couple should open next summer.
Dr. Fanaroff is a walking, talking
of years away from the final results,
beacon of hope for NICU parents,
because he was born into the very
Dr. Martin says he is "cautiously +++
optimistic" of its efficacy.
same unit 37 years ago. The story gets
Under Dr. Martin and the elder By late April, Olivia's preemie
better: His father, Dr. Avroy Fanaroff,
Fanaroff's leadership, Rainbow Pilates - combined with her NICU
is now chairman of pediatrics at
recently began construction of a new care - has paid off. Her daily weigh-
Rainbow, and is, along with Dr.
NICU adjacent to the state-of-the- in reflects a whopping two-pound,
Martin, considered a "godfather of
art, 44-bed Neonatal Transitional 13-and-a-half ounce gain 011 her 15-
neonatology" for the advances they
Care Unit on the fourth floor. The and-a-half inch frame. She has been
have pioneered in the field. The disci-
transitional unit, completed five years switched from the ventilator to a
pline was still new when his son
ago, is a step-down facility that pro- continuous positive airway pressure,
struggled alone in a unit from which
vides a homey setting in private or CPAP, respirator, which more
parents were excluded. The elder
rooms where neonates move to pre- gently in troduces oxygen through
Fanarofflater changed all of that, rev-
pare for discharge. When finished, the a device attached to her nose. A
olutionizing the paradigm for neona-
new 40-bed unit will allow parents to little more weight, a little less need
tal intensive care by encouraging
stay in private rooms with their chil- for intensive support, and Olivia can
parents like Sara to spend as much
dren. graduate to the transitional care unit.
time with their children as possible.
Thanks to a $7 million gift from "She's really turned that corner,
Olivia has also received another
the Elizabeth Prentiss Foundation, and is starting to do well," says
125

8. Dr. Fanaroff.
Sara, who has returned to her cus-
tomer service job for a trucking com-
pany in Berea, is finally able to hold
her daughter in the crook of her arm
for short periods of time. Gazing lov-
ingly 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 medi-
cine delivered by deeply compassion-
ate 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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126 NorthernOhioLive June 2007