She knocked on Jody’s door. Jody opened the door and right
away saw Sophie’s distress. Jody led her to the couch, where
Sophie plopped herself down. She put her head in her hands
and let go. She cried uncontrollably as she let it all out—all the
thoughts and feelings she’d worked so hard to keep in check all
these weeks. She hated feeling this way.
“And don’t tell me how lucky I am to have delivered here
in this state-of-the-art hospital—I don’t need to hear that right
now,” she said between sobs.
“I had no intention of saying such a thing,” said Jody in a
gentle tone. She passed Sophie a box of tissues. Sophie pulled
a handful out to wipe the thick mucus dripping from her nose.
Minutes passed as her emotions rose and fell, softening briefly,
then building up again to cause another release of tears.
When the storm had settled, Jody took Sophie’s hand and
began to speak. She spoke of a better life for her and Adam and
Danny, after the NICU. She talked about all the NICU suc
cess stories. She told her about the follow-up clinic—the clinic
where graduates of the NICU celebrated their milestones, their
birthdays, their nursery school graduations. She spoke of the
compassion and love the nurses had for those kids, and the strong
connection between staff and families and between the families
themselves. Sophie listened. She noticed the pictures around
Jody’s office of former NICU babies with their parents and their
siblings—all smiles and love.
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“These families have faced very tough, challenging situa
tions, like you and Adam. They’ve come out on the other side of
it stronger than they thought possible. The experience of having
a premature baby was the hardest thing most of them have lived
through. But they survived. Just as you will. They have a different
kind of appreciation for their kids, and for all of life, that other
parents don’t have.”
Sophie wasn’t anywhere near feeling any gratitude.
Jody suggested they go visit the CCN—chronic care nursery.
“Why does everything in medicine have an acronym?”
Sophie tried to joke.
They took the elevator to the seventh floor. Before opening
the door to the unit, Jody explained that this was where chron
ically ill kids went when they left the NICU but wouldn’t be
going home. It was where they stayed until a bed in a long-term
facility became available.
“Like a nursing home for kids?”
“Yeah, pretty much.”
Whoever was in charge of decorating the CCN had tried
hard. There were colorful pictures on the walls of bright red
balloons and smiling blue teddy bears. The lighting had been
updated with soft lightbulbs and wall sconces, helping to add a
feeling of warmth. The floors had been done over with hardwood
laminate. But the effort had fallen woefully short. The metal cribs
had bars that were spaced for safety regulations. They looked like
cages, Sophie thought. The walls held a coating of old grime, and
the curtains needed washing. The room was still an old, forgotten
section of the seventh floor.
Sophie felt a tightness in her chest as she looked around the
room at the handful of kids living there. There was a young child
with a tracheostomy. She was attached to a corrugated hose that
ran from a small ventilator machine to the trach hole in her
neck. Her throat rattled with mucus with each breath. Drool ran
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down her chin. A stuffed animal lay in the girl’s arms, but she had
no interest.
In the next crib over, lying quietly with his eyes closed, was
a toddler dressed only in his pajama bottoms. A red rubber tube
protruded from his overly distended belly. There were multiple
scars on his abdomen, and the skin around the base of the tube
was angry red and excoriated. A machine next to his crib slowly
dripped formula into his tube, one drop at a time.
Another child, maybe four years old, lay on her crib mattress.
Her back severely arched backward. She appeared to be looking
behind her, except that her eyes weren’t focused on anything. She
held a blank stare. Her legs and arms were contracted and contorted
into unnatural positions. The whole place was heartbreaking.
Jody leaned toward Sophie and said quietly, “She has cerebral
palsy.”
There were a few other children, ranging in age from infancy
to toddlers. She heard the whooshing sound of humidified air
blowing into the tracheostomy and the mechanical clicking of
the machine delivering drops of formula into the gastric tube.
Cardiac monitors blipped and beeped continuously. She heard an
infant cry and the low voices of the nurses trying to comfort the
baby. Beyond the sights and sounds, the smell of ammonia per
meated the air—not from a cleaning agent but from wet, soiled
diapers. Sophie felt overwhelming sadness by the institutional
ization of the unit. The decorator had tried, but there was only so
much one could do.
“The staff works hard,” Jody said. “They love these kids, but
it’s tough. It’s an emotionally demanding job, as you may imag
ine. Nobody talks about these children who have been put aside.
Nobody other than the staff who work here.”
A physical therapist massaged the tight, spastic limbs of the
CP girl. A nurse was trying to spoon-feed an older toddler, who
gazed off to an empty corner of the ceiling. There were no parents.
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“They are wards of the state because their parents, unable to
care for them, have relinquished their parental rights.”
Sophie felt tears collect in the corners of her eyes. She saw
the point Jody was trying to make. She should be glad that Danny
was doing as well as he was.
“Why are they on monitors if they’re out of intensive care?”
“The state is accountable for these kids, and the hospital is
responsible for their welfare. A tragic accident happened several
years ago when a baby died in his sleep. He got tangled in his
feeding tube in the middle of the night—so now all kids have to
be on a monitor. But remember what I said about the kids in the
follow-up clinic who are doing well? There’s research being done
to improve the care of preemies all the time. Unfortunately, there
will probably always be a few like these kids who still suffer bad
outcomes.”
“Were all these kids premature?”
“All but one.”
Sophie and Jody left the CCN as a group of medical students
were led in by one of the attending pediatricians.
The two women got on the elevator together.
“How are you doing?” asked Jody.
“I don’t know, Jody. That was pretty depressing. But I guess
you got my mind off my own dark thoughts. Thanks for that. And
you reminded me of an important meeting this afternoon. One I
can’t miss.”
“Well, you come back anytime, okay?”
“Yes, thank you.” Sophie continued to ride to the ground
floor.
