• Article
  • April 27, 2018

A Child's Special Talent Overshadows a Complex Medical Condition

Bridget has been under anesthesia more than 30 times in 11 years.

By Christine Bush

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

Anyone 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 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 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."

Moving forward with life

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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