Dad honors daughter’s strength and gives back to Texas Children's Hospital NICU through fitness fundraiser

The first 57 days of Olivia Steven’s life were a blur for new parents Chad and Leslie. The newborn was cared for at the Texas Children’s Hospital neonatal intensive care unit (NICU) immediately after birth. Olivia’s parents would soon learn that their daughter had an extremely rare genetic condition – 13q deletion syndrome. Though her first eight weeks were full of questions and uncertainties, they would also reveal just how strong Olivia is.

Chromosome 13q deletion syndrome occurs when there is a missing copy of genetic material on one of the 23 pairs of chromosomes – this can lead to birth defects and developmental and growth delays. In Olivia’s case she is nonverbal and uses a wheelchair.

Those first few months in the hospital included numerous tests and a procedure to place a G-tube so she could eat, but when she was 2-months old Olivia finally was able to go home. There her parents adjusted to their new normal – Olivia still was on nasal oxygen and tube fed.

During those first few months of her life, Olivia’s dad found solace at his local CrossFit gym. “It was an escape for me, a place I could go to clear my mind,” Chad said.

It also was where Chad created the “Olivia” workout, and along with it a fitness competition that is a testament to Olivia’s strength. The event, called Battle Buddy 57, serves as a fundraiser for the Olivia Grace Stevens Endowed Fund in Neonatology at Texas Children’s. The routine features eight exercises, one per week of Olivia’s hospital stay. Teams of two complete 57 reps of each exercise, one for each day of her time in the NICU.

Texas Children’s continues to provide care for Olivia, and her pediatrician, Dr. Kristin Koush of Texas Children’s Pediatrics, has been part of her care team since before she was born.

"I met Olivia's parents for a prenatal visit before she was born. At our meeting, we made strategies about how to quickly and thoroughly evaluate Olivia when she was born due to concerns raised by her mother’s obstetrician,” Koush said.  “I knew that in the Texas Children’s Newborn Center she would have excellent care and a team of subspecialists would be able to collaborate about her medical needs.”

Fast-forward 12 years later, Olivia is a delightful child who is incredibly resilient.  “She has overcome many challenges that her medical conditions have presented. We have a great team of specialists involved in her care, many of whom have known her from her days in the NICU,” said Koush.