Her future is bright
Marcy-Marie was born just two years after our first child. Like many others, we thought we had the whole parenting thing figured out. Turns out, we had many new lessons to learn.
We had anticipated a normal, healthy pregnancy and delivery, just like we had experienced with our first child. However, at 24 weeks, my pregnancy went from being routine to complicated. I began having preterm labor. After weeks of holding off labor with medication and bedrest, Marcy made her appearance.
Her first Apgar score was low, and just hours after she was born we learned she had abnormal blood cultures and had developed a fever and an erratic heart rate. She was swollen and puffy, and seemed stiff all over. The doctors suspected an infection.
After several courses of IV antibiotics, the fever and infection disappeared within a few days. But the stiffness did not go away. We noticed she could not open and close her right hand, and some of her fingers appeared to be stuck or frozen in place. Diaper changes were difficult as her hips and legs were extremely tight. Her feet were slightly clubbed, and she could not turn her neck from side to side. Despite all of this, she was the most delightful and happy baby.
We were sent to Brenner Children’s Hospital in Winston-Salem, where we received and continue to receive top-notch specialty care. At three weeks of age, after seeing pediatric orthopedists, geneticists and therapists we were finally given a diagnosis — Arthrogryposis Multiplex Congenita (AMC).
Arthrogryposis causes joint contractures (“frozen” joints) as well as stiff muscles. Some children are mildly affected, while others may be absent of muscle tissue altogether, and never walk or move. Some children are affected in every joint and muscle, while others in only a few areas. There is no cure. But therapy can help improve function.
Immediately Marcy began an intensive therapy program. This included daily stretching at home every 45-60 minutes during her waking hours. She saw physical and occupational therapists at the hospital two-three times each week. Marcy underwent serial casting and splinting of her hands and feet for more than a year, and has had several corrective surgeries.
As I look back, I remember the confusion and how overwhelmed we felt. We were told that Marcy might never walk, and if she did, it would be much later in life. We were also told that her type of Arthrogryposis was caused by an extremely rare genetic disease. This disease may cause other serious medical issues, and no one knew what her quality of life would be like.
Despite the grim prognosis, she was walking by 2 and running soon after. She is now a very active 10-year-old who has achieved her yellow belt in Jujitsu and enjoys playing softball. Her quality of life is awesome, and her future is bright. She will need a hip replacement soon and will continue therapeutic stretching for the rest of her life. But we are thankful. She has brought so much joy to our lives and through her personal struggles has inspired many others to be the best that they can be.
Lindsey Cox lives with her husband Chad, and their three children, Cleo, 12; Marcy-Marie,10; and Reece, 9; in Thomasville. Lindsey works from home as a freelance copywriter and editor. She also home-schools her children and enjoys helping other families take the home-schooling plunge.