Kiera’s Story

When you meet Kiera, you meet a tough little girl who loves Disney princesses and superheroes. These two interests perfectly describe her – she is sweet, loving and caring like a Disney princess, but has the determination, strength and fight of a superhero.

Beautiful Kiera made her debut at 35 weeks gestation and was immediately transported to Nationwide Children’s. While her first-time parents knew prior to their baby girl’s birth that she was going to have issues, the extent of them weren’t clear until she was born, One of the biggest questions was what the condition of her legs would be.

Kiera was born with OEIS Complex, a rare birth defect that occurs in one out of every 400,000 births. OEIS Complex is a combination of four defects frequently found together; omphalcele, exstrophy of the bladder, imperforate anus and spinal defects. Kiera was also born with one leg and the beginnings of another. Neither leg would be functional because they did not form completely due to her spinal cord defects. At three days old, tough little Kiera had surgery on her bladder, and it was only then that her parents were finally able to hold their child for the first time.

After many conversations with all of Kiera’s doctors, her parents decided that having both her legs amputated from above the knee down was the best decision for her. At six months old Kiera had her spine surgery, followed by her leg surgery.

Five-year-old Kiera has endured 10 surgeries and countless other procedures and hospital stays. In October 2017, she had a 12-hour surgery where the Urology, Colorectal and Gynecology teams performed an entire pelvic reconstruction.

Over time, Kiera has slowly come out of her shell and let her personality shine. She now enjoys going to the hospital and looks forward to seeing all her nurse and doctor friends. When she has appointments, she and her family usually spend an extra hour or more going around in her purple, princess-themed wheelchair so she can visit with everyone.

“Nationwide Children’s is home to us because of all the great people and doctors that have become family. Without them I can’t imagine how our lives would be. We have talked to other families throughout the world with Kiera’s condition and almost all of them spend all their time traveling to see different doctors all over the country,” says Kiera’s father, Joe.

Despite her challenges, Kiera is an active kid who loves gymnastic and tumbling classes, bounce houses, indoor rock climbing and zip lining.

https://flutter.nationwidechildrens.org/wp-content/uploads/2018/11/Kiera-.jpg
  • Name: Kiera .Kiera
  • Condition(s): OEIS Complex
  • Age at Treatment: 0 Days

When you meet Kiera, you meet a tough little girl who loves Disney princesses and superheroes. These two interests perfectly describe her – she is sweet, loving and caring like a Disney princess, but has the determination, strength and fight of a superhero.

Beautiful Kiera made her debut at 35 weeks gestation and was immediately transported to Nationwide Children’s. While her first-time parents knew prior to their baby girl’s birth that she was going to have issues, the extent of them weren’t clear until she was born, One of the biggest questions was what the condition of her legs would be.

Kiera was born with OEIS Complex, a rare birth defect that occurs in one out of every 400,000 births. OEIS Complex is a combination of four defects frequently found together; omphalcele, exstrophy of the bladder, imperforate anus and spinal defects. Kiera was also born with one leg and the beginnings of another. Neither leg would be functional because they did not form completely due to her spinal cord defects. At three days old, tough little Kiera had surgery on her bladder, and it was only then that her parents were finally able to hold their child for the first time.

After many conversations with all of Kiera’s doctors, her parents decided that having both her legs amputated from above the knee down was the best decision for her. At six months old Kiera had her spine surgery, followed by her leg surgery.

Five-year-old Kiera has endured 10 surgeries and countless other procedures and hospital stays. In October 2017, she had a 12-hour surgery where the Urology, Colorectal and Gynecology teams performed an entire pelvic reconstruction.

Over time, Kiera has slowly come out of her shell and let her personality shine. She now enjoys going to the hospital and looks forward to seeing all her nurse and doctor friends. When she has appointments, she and her family usually spend an extra hour or more going around in her purple, princess-themed wheelchair so she can visit with everyone.

“Nationwide Children’s is home to us because of all the great people and doctors that have become family. Without them I can’t imagine how our lives would be. We have talked to other families throughout the world with Kiera’s condition and almost all of them spend all their time traveling to see different doctors all over the country,” says Kiera’s father, Joe.

Despite her challenges, Kiera is an active kid who loves gymnastic and tumbling classes, bounce houses, indoor rock climbing and zip lining.

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