Children's Hospitals Today - Spring 2018 - 32

VITALS / THRIVING

Arriving at an unexpected destination
This child's special talents overshadow an extremely complex medical condition.
BY CHRISTINE BUSH

nyone who wants to keep their age a secret should steer
clear of Bridget Benson. The 11-year-old has extraordinary math skills, and if you tell her your birth date and year,
she will immediately respond with your age. What's even more
impressive is that Bridget memorizes hundreds of birthdays
and recalls the information when she sees someone again.
The possibility of Bridget's advanced math skills was
uncertain when she was born. Days after her birth, Bridget's
parents, Kim and Josh, learned she had CHARGE
syndrome, a genetic condition that occurs in
about one in every 10,000 births. Bridget had
several of the distinctive features associated
with CHARGE, including palsy on the right
side of her face and swallowing difficulties. She
needed multiple surgeries to place her feeding
tube and tracheostomy, repair her esophagus,
and fix the connection between the esophagus
and the trachea. She's been under anesthesia
more than 30 times in her short life.
Bridget spent her first six months in the NICU at Rainbow
Babies and Children's Hospital in Cleveland. "At first it was
hard because everything we had imagined experiencing with
our first child was different," Kim says. The couple found

isn't bad; it's just different than what you planned for. "That
is how we've lived our life," Kim says. "We were sad at first, but
we were not going to let this bring us down. We were going to
make the best out of this situation."

Discovering a talent
The Bensons and Bridget's grandparents were trained on
caring for her gastrostomy tube, the tracheostomy tube
that helped her breathe, and managing heart
rate and oxygen monitors. Bridget required
constant attention, with the trach tube needing
suctioning every seven to 10 minutes. Her
parents work outside of the home, and Bridget
wasn't medically stable enough to go to a
traditional day care, so hospital staff arranged
for round-the-clock nursing care.
One of the differences the couple experienced
in the first year and a half of parenthood was
never hearing Bridget cry-the trach tube made it impossible
for her to vocalize. Doctors removed the trach before she
turned 2 years old, helping Bridget demonstrate one of
her talents. The Bensons read to her a lot, and one day Kim
heard what sounded like Bridget reading. Kim wondered if
her daughter had memorized the words. Then she realized
Bridget was reading the book. "Her preschool teacher and the
other kids were just amazed," Kim says. "She was reading at
the age of 3, and she was self-taught."

IT ISN'T BAD; IT'S
JUST DIFFERENT
THAN WHAT YOU
PLANNED FOR.

Moving forward with life

Today, Bridget enjoys life with her brother, Jack, and her sister Maggie.

clarity when a friend shared the essay "Welcome to Holland."
The story relates preparing for a baby to planning for a
vacation in Italy and being surprised when the plane lands
and the flight attendant says, "Welcome to Holland." Holland

CHILDREN'S HOSPITAL S TODAY Spring 2018

Despite the difficulties of Bridget's first years, the Bensons
wanted to stick to their original plan and give Bridget siblings.
"We had dreams of a big family," Josh says. "We wanted to
experience the things that we had hoped for Bridget." The
couple expanded their family, but bringing home a baby just
days after birth didn't seem normal. "Bridget still had several
of her monitors when our second child, Jack, came home, and
I kept checking his heart rate and oxygen levels," Kim says. "I
just couldn't believe he didn't need monitors on him." Jack is
now 9 years old; little sister Maggie is 5.
The family marks Bridget's hospital discharge date, Oct. 3,
yearly and don't dwell on the plans that didn't materialize.
"Bridget really brings the best out of people," Josh says.
"We're not sad at all about her condition. There are things
that get you sad, like that she misses milestones. But some
of the other things are so special, it's okay. We cherish the
milestones that she does make."

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