Twelve-year-old Katelyn is a fighter. She’s always been a fighter. From the moment she took her first breath, her family has been told time and time again that she may not survive the complications she suffers from cerebral palsy and spastic quadriplegia, but each time, with the help of her loved ones and UNC caregivers, she has found the strength to beat the odds. This is Katelyn’s story.

Fighting Back

When Katelyn came into the world more than 12 years ago, the doctors at the Greensboro area hospital where she was born didn’t have much hope she would survive. Not breathing upon delivery, the newborn suffered hypoxic eschemic insult to the brain due to lack of oxygen. After being discharged from a Greensboro area hospital on hospice care, Katelyn came to UNC at the age of 1 month old. She is now 12 years old.After three weeks in the neontatal intensive care unit (NICU) with a feeding tube, Katelyn was discharged home on hospice, expected to die soon thereafter.

Despite the expert opinions to the contrary, Katelyn’s mother, Andrea, wasn’t convinced all hope was lost. Sure, the birth of her sixth child had been unlike those of her other children, and Katelyn would most certainly suffer the consequences of permanent brain damage all her life, but Andrea was committed to making that life—no matter how long or short—as full as possible. She wouldn’t give up. She would fight for her daughter.

At 1 month old, Katelyn came to UNC for a neurology consultation and soon had a multidisciplinary team of pediatric subspecialists dedicated to her care. The first year was tumultuous, with three separate cases of pneumonia (the biggest threat to her survival) and a major heart surgery unrelated to her birth injury, but through it all, Andrea and the care team learned something very special: Katelyn is a fighter, too. Just like her mom.

Katelyn survived her first year, something many thought impossible given her eventual diagnosis of spastic quadriplegia, the most severe form of cerebral palsy. And there have been many ups and downs in the ensuing years, including a tracheostomy, several surgeries and many inpatient stays, including some in the pediatric intensive care unit (PICU) during which, once again, it appeared Katelyn might not make it, but each time she’s pulled through. She even went five years, from ages 6 to 11, without any respiratory hospitalizations, a significant accomplishment given her challenges.

“She's just always very happy, not complaining, never grouchy or fussy, and she’s usually got a laugh or a smile for you,” says Andrea of the young lady Katelyn has become.It hasn’t been an easy road, but Katelyn’s family relishes the small joys—seeing Katelyn well and happy.

“She's just always very happy, not complaining, never grouchy or fussy, and she’s usually got a laugh or a smile for you,” says Andrea of the young lady Katelyn has become.

Katelyn most enjoys spending time with her family, which has grown to include six nieces and nephews. She loves being read to and watching her favorite videos like Charlotte’s Web and Clifford the Big Red Dog. She also enjoys listening to music, especially when her brother plays piano or guitar for her, and letting her teenage sisters style her thick, wavy hair.

“Her world is at home, very simple. We basically have a hospital suite set up, and she has a private duty nurse,” says Andrea. “We have a handicap bathroom. She can access through the computer, at a simple level. I’m proud of the system set up, and I like to share with new parents who are going through this.”

Andrea’s hands-on involvement in improving care has made quite an impression on other Children’s Hospital families and even Katelyn’s care team.

“Andrea has been a strong advocate for changes in system, and she is wonderful for the care of her child,” says pediatric pulmonologist, Dr. Marianne Muhlebach. “Initially she was completely against the trach and now has helped several of our families cope with similar issues.”

In talking to Andrea, it is clear the respect and admiration between family and care team is mutual.

“It’s difficult to find care providers to treat special needs kids like Katelyn, and I’ve always had a positive experience (at N.C. Children’s Hospital),” says Andrea. “Of the hospitals we’ve been to, I prefer Chapel Hill as far as the care. I prefer the whole package. I really do.”

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