Millie’s Story

For almost every year of her life, Millie has had a surgery. One of these was open-heart surgery.

Millie may be little, but the challenges she faces are big. She was born with Distal Arthrogryposis Type I. The many physical issues she contends with include bilateral club feet and hands, atrial septal defect (congenital heart defect), swallowing issues, and delayed gross and fine motor development.

Because of Millie’s complex condition, she has received multidisciplinary expert care from Nationwide Children’s Heart Center, Orthopedics – Hand and Upper Extremity Program, Genetics, and Physical Therapy. She began to undergo Ponseti method of treatment (serial casting) for her clubbed feet at one week old. Besides her open-heart surgery, she has had two bilateral tendon Achilles lengthening surgeries, and most recently an osteotomy of her left wrist.

The Heart Center at Nationwide Children’s Hospital provides pediatric and adult heart patients with outstanding diagnostic, treatment and research facilities. The Center consolidates all cardiology and cardiothoracic surgery services into a comprehensive model for family-centered care and convenience.  Our Orthopedics team specializes in diagnosing, evaluating and treating problems of the musculoskeletal system, trauma and fractures, scoliosis and other spinal abnormalities in children of all ages. Our key orthopedic programs include: Hand Program, Hip Program, Limb-Lengthening, Orthopedic-Oncology, Spine Program, Sports Medicine, and Trauma. At Nationwide Children’s, every child diagnosed with an orthopedic problem is handled with an individualized treatment plan. Our Physical Therapy department cares for patients who have a temporary or permanent disability due to injury, disease, birth defect or pain. Therapists also evaluate and instruct children in the use of wheelchairs, braces, crutches, walkers, canes or other durable medical equipment. Our goal is to help every child enjoy life by attaining his/her optimum level of independence.

Millie is determined to be independent too. She plans to be a princess when she grows up.

“Millie has no cognitive delays, and in fact seems wise beyond her years,” says Millie’s mom, Jenny. “Through it all, Millie has remained such a strong and happy child. She stunned her Cardiothoracic Intensive Care Unit nurses after open-heart surgery when she was up and playing, smiling, and laughing in her crib at 3:00am following her open heart surgery.”

Today Millie loves to show everyone the things she has only recently been able to do: run and hop. “She loves to sing songs that she has made up, and show you all her ‘zippers’ where Drs. Samora, Popp, and Galantowicz have worked their magic,” adds Jenny.

Yes, Millie may be little, and the challenges she faces big, but her spirit, energy and enthusiasm are even bigger. There is no doubt that with her amazing spirit and sweet smile, she will be a true inspiration for the participants who pass through her mile at the Nationwide Children’s Hospital Columbus Marathon & ½ Marathon. She told us she wants to show them how to run with “super cat speed.”

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  • Name: Millie J.Millie Johnson
  • Condition(s): Arthrogryposis
  • Age at Treatment: At birth
  • Age Today: 08/16/20118 Years

For almost every year of her life, Millie has had a surgery. One of these was open-heart surgery.

Millie may be little, but the challenges she faces are big. She was born with Distal Arthrogryposis Type I. The many physical issues she contends with include bilateral club feet and hands, atrial septal defect (congenital heart defect), swallowing issues, and delayed gross and fine motor development.

Because of Millie’s complex condition, she has received multidisciplinary expert care from Nationwide Children’s Heart Center, Orthopedics – Hand and Upper Extremity Program, Genetics, and Physical Therapy. She began to undergo Ponseti method of treatment (serial casting) for her clubbed feet at one week old. Besides her open-heart surgery, she has had two bilateral tendon Achilles lengthening surgeries, and most recently an osteotomy of her left wrist.

The Heart Center at Nationwide Children’s Hospital provides pediatric and adult heart patients with outstanding diagnostic, treatment and research facilities. The Center consolidates all cardiology and cardiothoracic surgery services into a comprehensive model for family-centered care and convenience.  Our Orthopedics team specializes in diagnosing, evaluating and treating problems of the musculoskeletal system, trauma and fractures, scoliosis and other spinal abnormalities in children of all ages. Our key orthopedic programs include: Hand Program, Hip Program, Limb-Lengthening, Orthopedic-Oncology, Spine Program, Sports Medicine, and Trauma. At Nationwide Children’s, every child diagnosed with an orthopedic problem is handled with an individualized treatment plan. Our Physical Therapy department cares for patients who have a temporary or permanent disability due to injury, disease, birth defect or pain. Therapists also evaluate and instruct children in the use of wheelchairs, braces, crutches, walkers, canes or other durable medical equipment. Our goal is to help every child enjoy life by attaining his/her optimum level of independence.

Millie is determined to be independent too. She plans to be a princess when she grows up.

“Millie has no cognitive delays, and in fact seems wise beyond her years,” says Millie’s mom, Jenny. “Through it all, Millie has remained such a strong and happy child. She stunned her Cardiothoracic Intensive Care Unit nurses after open-heart surgery when she was up and playing, smiling, and laughing in her crib at 3:00am following her open heart surgery.”

Today Millie loves to show everyone the things she has only recently been able to do: run and hop. “She loves to sing songs that she has made up, and show you all her ‘zippers’ where Drs. Samora, Popp, and Galantowicz have worked their magic,” adds Jenny.

Yes, Millie may be little, and the challenges she faces big, but her spirit, energy and enthusiasm are even bigger. There is no doubt that with her amazing spirit and sweet smile, she will be a true inspiration for the participants who pass through her mile at the Nationwide Children’s Hospital Columbus Marathon & ½ Marathon. She told us she wants to show them how to run with “super cat speed.”

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