Makya’s Story

At Teena’s first ultrasound, she was told what no parent every wants to hear. “Something is wrong with your baby.” Her unborn son, Makya, had a severely deformed spine, and no quality of life could be guaranteed for him. Teena and her husband (at the time) were gently advised to consider terminating the pregnancy. But, after a miscarriage and trying so long to have a child, they weren’t ready to give up.

When Makya was born, he couldn’t breathe and kept having seizures. He was transferred to the NICU at Nationwide Children’s, where doctors found that in addition to spinal issues, he had a trachea-esophageal fistula – an abnormal connection between the esophagus and the trachea – and needed surgery right away.

A few years later, Makya received a VEPTR implant, which is a growing rod that has to be surgically lengthened every 6 months. From 2009 to 2016, he has either been lengthened or “revised” every 6 months in a painful procedure. But, in March 2016, Dr. Samora approached Makya and his family with a hopeful new option, the magnetic MAGEC rod. Although still painful, Makya gets his MAGEC rod lengthened just 3 millimeters every other month without needing surgery.

Makya’s 15 back surgeries haven’t stopped him from riding horses, playing baseball, running and riding his bike. He doesn’t let anything hold him back, and faces each day with courage, a smile, and a positive attitude.

“Nationwide Children’s Hospital has enabled Makya to not only life, but to live a somewhat normal life. Without the innovative procedures and rods, he would not be alive,” says Teena.

http://nchflutter.wpengine.com/wp-content/uploads/2017/03/Makya10002.jpg
http://nchflutter.wpengine.com/wp-content/uploads/2017/03/Makya1000.jpg

At Teena’s first ultrasound, she was told what no parent every wants to hear. “Something is wrong with your baby.” Her unborn son, Makya, had a severely deformed spine, and no quality of life could be guaranteed for him. Teena and her husband (at the time) were gently advised to consider terminating the pregnancy. But, after a miscarriage and trying so long to have a child, they weren’t ready to give up.

When Makya was born, he couldn’t breathe and kept having seizures. He was transferred to the NICU at Nationwide Children’s, where doctors found that in addition to spinal issues, he had a trachea-esophageal fistula – an abnormal connection between the esophagus and the trachea – and needed surgery right away.

A few years later, Makya received a VEPTR implant, which is a growing rod that has to be surgically lengthened every 6 months. From 2009 to 2016, he has either been lengthened or “revised” every 6 months in a painful procedure. But, in March 2016, Dr. Samora approached Makya and his family with a hopeful new option, the magnetic MAGEC rod. Although still painful, Makya gets his MAGEC rod lengthened just 3 millimeters every other month without needing surgery.

Makya’s 15 back surgeries haven’t stopped him from riding horses, playing baseball, running and riding his bike. He doesn’t let anything hold him back, and faces each day with courage, a smile, and a positive attitude.

“Nationwide Children’s Hospital has enabled Makya to not only life, but to live a somewhat normal life. Without the innovative procedures and rods, he would not be alive,” says Teena.

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