Meet Miah: 2020 Family Advocacy Week Champion
Miah is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Miah and her family will share information about her health journey, Children’s Hospital of Philadelphia’s role in providing Miah with necessary health care services, and why the public and our elected officials must invest in the future of kids like Miah.
Miah was diagnosed in utero with spina bifida and Arnold Chiari malformation—a condition that affects the spinal cord at the brainstem.
Stephanie, Miah’s mother, had surgery when she was 21 weeks pregnant to repair Miah’s spinal cord. The doctor’s at Children’s Hospital of Philadelphia (CHOP) monitored mother and daughter closely until Miah was born at 34 weeks and spent her first 15 days in the NICU.
As Miah’s health improves, she visits CHOP for regular spina bifida clinic checks and most of her routine testing. Specialists at Children’s Hospital of Philadelphia still see Miah for consultations and second opinions.
As a result of Spina bifida, Miah uses a catheter due to repeat urinary tract infections, lost her bladder and bowel function, and had surgery for both a tethered spinal cord and shunt placement.
However, she is doing things that the family was told she would never do. Miah can walk independently with the help of orthotics, jump, and stand on her tiptoes. She has no developmental or cognitive delays and her verbal skills are advanced for her age.
“Miah’s condition continues to improve, and her quality of life is significantly better,” says Stephanie. “She would definitely be in a wheelchair if we hadn’t gone to the specialists at Children’s Hospital of Philadelphia.”
Today, Miah is doing great. She loves doing makeup and playing dress-up. Her parents are confident that her spirited determination will get her through any challenge she might face. They also stressed the importance of access to proper care that all families deserve.