Meet Braden: 2021 Family Advocacy Week Champion

Braden is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Braden and his family will discuss his health journey, the Iowa Pediatric Healthcare Collaborative’s role in providing him with necessary health care services, and why the public and our elected officials must invest in the future of patients like Braden.

At birth, Braden was diagnosed with campomelic dysplasia, which is characterized by facial anomalies, a cleft palate, and shortening and bowing of long bones. He was also diagnosed with Pierre Robin syndrome, a rare congenital birth defect characterized by an underdeveloped jaw, backward displacement of the tongue and upper airway obstruction. Since then, the network of children’s hospitals in Iowa have provided essential care for Braden. 

“We learned of his difficulties at my 20-week ultrasound, and he was diagnosed at 10 days old,” says Amanda, Braden’s mother.

Immediately, Braden’s parents were concerned with getting him the best care possible, giving him the best chance at life, and paying for his care. Braden was ventilated at birth and needed an immediate tracheostomy to survive.

“We needed to coordinate care for home medical equipment, home nursing, and surgeries interventions required for survival,” says Amanda. “After he survived the emergency surgeries, his care turned into surgeries and interventions that provided more independence.”

Due to the complexity of Braden’s diagnosis, he is cared for by four hospitals across the state of Iowa. Braden visits ChildServe for his physical and occupational therapies, and wheelchair care and maintenance. He sees specialists and has undergone surgery at the University of Iowa Stead Family Children’s Hospital. His ENT and pulmonologist provide care at Blank Children’s Hospital and he spent time in the MercyOne Children’s Hospital NICU.

Today, Braden is 11 years old and surpassing doctor’s expectations. He’s doing well in school, walking and talking and practicing his independence.

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