Nothing About Us Without Us
Developing Innovative Technologies
For, By and With Disabled Persons
Part Six
CHILD-TO-CHILD:
INCLUDING DISABLED CHILDREN
CHAPTER 47
Vania and Jesica :
A Ten-Year-Old Doctors a Younger Child
JESICA is a lively, high-spirited little girl from a poor barrio in the city of Mazatlan, But at age 5, when her mother first brought her to PROJIMO, her condition was critical.
Three days after Jesica was born, a doctor had injected her in the backside (her mother does not know why). An abscess formed at the injection site. The infection spread to her spinal cord, leaving her paralyzed from the hips down (paraplegia).
Jesica spent most days alone in the family hut. Her father was a fisherman, but when there was no work, he spent most of his time drinking. Her mother was often gone all day trying to earn money to feed the children.
Because of her spinal-cord injury, Jesica had reduced feeling in her lower body and she lacked urine and bowel control, which had resulted in chronic sores on her genitals and near her anus. Poor hygiene had made the sores worse. She would sit all day in her urine and poop, which aggravated her sores. Yet she did not complain, because she felt no pain.
Jesica also had a large, infected sore on top of her left foot. This had formed from trying to stand. She would hold onto a chair and pull herself up. But her ankles flopped over so far that she stood on the tops of her feet.
A decision was made for Jesica to stay at PROJIMO long enough to heal her sores, straighten her clubbed feet with a series of casts, and to equip her with leg braces so that she could walk. A family in the village agreed to take care of Jesica, because her mother needed to return to Mazatlan to care for the other children. But fortunately Jesica's mother was able to stay in the village for a few days, until Jesica felt comfortable with her new care provider, who was a very motherly woman known as Dona Tona.
VANIA is another little girl who had a hard childhood. She was born in a squatter settlement in Culiacan (the state capital). When she was one year old, there was a gun-fight in a neigh-boring shack. A bullet passed through the card-board walls of the shacks and hit her in the back, leaving her paraplegic. Two weeks after Vania got out of the hospital, her father abandoned the family. Soon afterwards her mother, in despair, committed suicide.
Vania was taken in by a great-aunt who was so old and frail that she had trouble caring for the disabled child. The little girl almost never left her aunt's home, never had a wheelchair, never went to school. She was nine years old when her aunt learned about PROJIMO and sent her there with neighbors. At that time, Vania was little more than skin and bones. Her head was crawling with lice, and she had severe pressure sores on her backside. Yet her warm smile and courage quickly won everyone's heart. At PROJIMO she saw people with spinal-cord injuries similar to hers, who were riding about independently in wheelchairs, working, and enjoying life. She decided she wanted to stay. Her great aunt gave permission.
Mari took charge of caring for Vania. She got rid of her head lice and began treating her pressure sores. The sores were large and deep. Mari cleaned them daily and packed them with a paste made of honey and sugar. They began to heal fairly quickly (see page 156).
The wheelchair shop workers made a small gurney, or wheeled lying-board for Vania. The board was mounted on a specially built wheelchair, for her to use after her sores healed.
At PROJIMO Vania discovered new life and hope. The whole village loved her. Mari and Conchita were like mothers to her. Because both women were paraplegic, vibrantly alive, and self-determined, they were excellent role models.
Vania soon began going to the village school, first on her gurney, and after her sores healed, in her wheelchair. She learned quickly.
After school, Vania enjoyed learning and working in the children's toy-making workshop with both disabled and non-disabled children.
Vania provides nursing care to a donkey. One afternoon, Mari was working in the treatment room cleaning Jesica's pressure sores. Suddenly, little Vania rolled in on her gurney and said importantly, "Do you have any more supplies for treating sores?"
"Over there on the table" said Mari. "Why?"
"I need to use them," said Vania mysteriously. Mari watched as the girl rolled over to the table and carefully transferred soap, a bottle of boiled water, gauzes, a small jar of honey-and-sugar, and a pair of surgical forceps (still in their sterile paper wrapper) to the edge of her gurney and wheeled out of the room. Curious, Mari wheeled to the doorway and looked out at her.
To Mari's amazement, Vania rolled up to a tree where a visitor had tied his donkey. The donkey had a big open sore on its neck, probably the result of a fight with a rival donkey. Fearlessly, Vania parked in front of the donkey, patted his nose, and talked to him tenderly. Then she began to gently wash the sore. The donkey flinched when she touched the sore, but let her continue. Dumbfounded, Mari watched as the girl carefully packed the sore with honey-and-sugar paste and covered it with gauze.
"We have a natural-born nurse here!" Mari exclaimed to members of the PROJIMO team, after Vania had carefully washed and returned the instruments. "We are so overworked, and we especially need additional nursing help." She turned to the little girl on the gurney. "Would you be willing to help us, Vania?" Vania's face lit up with delight.
Vania as Jesica's nurse. After a few days of instruction and guidance by Mari, Vania took over the nursing care of Jesica. Every day, she carefully washed and packed the sore that could be seen through the hole in the cast on the younger child's foot. Little Jesica enjoyed being treated by another girl with similar needs. Under Vania's care, the sores healed rapidly, without complications.
Jesica's bowel program. Vania helped the younger girl with another essential service. Jesica had no control of her bowels. At unpredictable times of the day and night, she would dirty her clothing or her bed clothes and foul her sores. To reduce the likelihood of accidents, Mari taught Vania how to do a "bowel program" with Jesica. Shortly after breakfast each morning, before Vania went to school, she would have Jesica lie on some old newspapers. Putting on a plastic glove, she would stimulate Jesica's rectum with a finger. This caused a reflex which made her bowels move.
With this help in emptying her bowels at the same time each day, Jesica was able to be active all day without much risk of "accidents." Her regular bowel program became even more important when, some time later, Jesica began to go to kindergarten.
Jesica and Vania both show great improvement. With Vania's help, Jesica's pressure sores healed rapidly. Meanwhile, Javier adjusted the casts on Jesica's feet to gradually straighten her ankles. When her sores were healed and her feet were straight, Marcelo fitted Jesica with full-leg plastic braces (calipers).
For Vania, being able to help Jesica gave her a new sense of personal worth and confidence. At an age when most little girls are playing "nursy-nurse" with dolls, Vania was providing real nursing services to a real child.
Equally important was the role model that Vania provided for Jesica. The girls became close friends, and helped each other in many ways.
Vania's story illustrates PROJIMO's goal: to help children go beyond what they are usually expected or allowed to do, and come closer to realizing their full potential.
Nothing About Us Without Us
Developing Innovative Technologies
For, By and With Disabled Persons
by David Werner
Published by
HealthWrights
Workgroup for People's Health and Rights
Post Office Box 1344
Palo Alto, CA 94302, USA