Story written by: Mary Ellin Barrett, Redbook Magazine Aug 97
Anne Marie Rose Marie
"SHE'S SO MUCH MORE THAN I EXPECTED"
When Anne Marie Price finally became pregnant after two years of trying, she was so excited she trembled as she told her family the news. Fifteen weeks later she sat in her doctor's office as he told her the baby had spina bifida. He said, "It's going to be a very hard life for you and the baby,"' recalls the 30-year-old environmental education teacher from Old Bridge, New Jersey. The fetus had badly clubbed feet, no movement in her legs, hydrocephalus ("water on the brain"), and a spine that protruded dramatically from her back. Another doctor advised that she terminate the pregnancy.
Price had always believed that life begins at conception, but she realized that had been a fairly abstract belief. "Now I was confronted with the reality that there was something wrong with my child, and I saw how hard it was to make the choice," she says. After a brief discussion, she and her husband, Doug, a mechanic for Otis Elevator, decided to go ahead with the pregnancy. "Whatever her problems, she was still our baby and we wanted her," says Price. "Even as I looked at sonograms that showed her tremendous disabilities, all I could think of was how cute that tiny little baby was."
Adjusting wasn't easy. Price had to change all of her own plans. She had intended to return to her job at a local nature center and put her baby in an on-site day care center but realized that between doctors' appointments and physical therapy, caring for the baby was going to be a full-time job. She also had to set aside dreams about her baby. "After we got the news, I watched my husband playing with our neighbor's son. I saw him tackle the little boy and heard the boy laughing, and I realized that I didn't know if my baby would be able to laugh or run around or wrestle with her dad."
The baby, a girl named Rose Marie, was delivered by C-section in January of 1995. After Price woke up from the operation, the nurses wheeled her into the intensive care nursery. "The first thing I saw was Doug with this big smile on his face, and then I saw this little baby with clear plastic wrap around her body to keep her spine from getting infected. As I got closer I could see that her legs were limp and her head looked very large, but my face kept going right to hers, and it was so precious. And she was so strong--she could lift her head and turn it. I thought, She's wonderful, she's beautiful, she's more than I expected."
Rose Marie has had to be strong. Immediately after birth she underwent surgery to close the hole in her spine. Since then, she has had nine more operations, to insert a shunt in her skull (in order to drain fluid) and to adjust the bones and muscles in her feet so that she can stand flat. "There was a lot of heartache in the beginning, especially for Doug, because the baby and I were spending so many nights in the hospital, and he would come home to an empty house and an empty bed with an empty cradle beside it."
Rose Marie has no movement in her legs, and at 15 months she was fitted for braces so she could stand and walk. She's learning to use crutches, but as she gets older and heavier she will spend more and more time in a wheelchair, which will give her the most mobility. She also faces surgery to file down the large bump on her back, and because her bladder and bowels do not function properly, she will have to use a catheter and suppositories to keep her intestines and urinary tract healthy.
Price worries about how her daughter will fare in the world: "I can't imagine the pain that will shoot through my heart if I hear that other children have made fun of my daughter. I want her to be accepted and loved." She also hopes that Rose Marie will go to college someday, learn to live independently, and find a mate. Price plans to have at least two more children and maybe adopt one or two more with disabilities.
Despite all the challenges, Price finds reasons to feel encouraged: seeing other children with spina bifida who are happy and playing, watching wheelchair athletes on television, hearing Rose Marie talking and laughing. The baby shows no signs of brain damage and is doing very well verbally and cognitively. And Price recalls that when Rose Marie was a little more than a year old, she learned to crawl commando style on her belly and stood up using her braces, which freed up her hands to play with toys on a table. "When I saw her stand, it gave me so much hope," says Price. "I thought, If she can do that, she can do anything she puts her mind to."
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