2016 Speak Now For Kids Family Advocacy Day Hero: Miah
At 18 weeks gestation, Miah was diagnosed with myelomeningocele, a defect of the backbone and spinal cord. In utero, the doctors at the Children’s Hospital of Philadelphia (CHOP) performed an extensive surgery to lessen the effects of Miah’s severe case of spina bifida. Immediately after her birth 13 weeks later, Miah was admitted to the neonatal intensive care unit (NICU) for 15 days in order to be monitored more closely. Miraculously, she would not need a second spinal surgery until her third birthday.
If it were not for the exceptional care Miah received at CHOP, she would be confined to a wheelchair, and unable to swallow or breathe on her own. She is able to do things today that her parents were told at diagnosis that she would never be able to do. Miah is still seen regularly at CHOP for spina bifida clinic checks, although her mobility and cognitive abilities have been improving exponentially.
Now 4-years-old, Miah is incredibly strong-willed and energetic. Although she faces mobility challenges daily, she never lets them stop her from participating in an activity. Miah would rather be playing outside than anything else in the world. She loves to ride her modified bike beside her older brother and chase her family’s chickens and ducks around the entire yard. In the fall, Miah will be starting preschool, and she is cognitively above her age-level thanks to the specialists at CHOP.