Children and Adolescents with Spinal Cord Injury
Of the about 11,000 individuals sustaining a SCI due to trauma, about twenty percent are under the age of 20. Most of these are in their late teens and sustained their SCI from a motor vehicle accident. Things like falls, diving, skiing, cheerleading, football and other sports make up the rest of the causes of spinal cord injury in children and teens. Increasingly, young men of color are becoming spinally-injured due to gunshot wounds.
Some children are born to live in a wheelchair because of a condition called spina bifida, a congenital illness that leads a child to have an incomplete nervous system at the base of the spinal cord. More rare causes of paralysis in children come out of having tumors, infections, and various other medical diseases.
Children with spinal cord injuries have a higher risk of developing scoliosis as their spine grows. Some may have to have surgery or braces to correct the curvature. They also stand the risk of getting hypercalcemia (elevated calcium levels) due to immobilization. Some of these children will have symptoms of nausea, vomiting, depression, poor appetite and malaise. They are more susceptible to things like pneumonia and pneumothorax because of their injury. Sleep apnea can be a problem.
Children under the age of ten have immature bladders and have more problems with bowel and bladder incontinence. For this reason, many children will have to be intermittently catheterized; it is not recommended for these Children to have a chronic indwelling catheter.
How a child handles being wheelchair-bound depends on their age. If the problem is congenital or occurred at a very young age, the child often knows nothing other than being in a chair so they don’t even understand how they are different from other kids. Older children can have difficulty with self-esteem and will need therapy or at least frequent encouragement by their family and friends. Some children regress while in the hospital and will not do anything for themselves.
Rehabilitation equipment is primarily designed for adults and must be adapted for use in children with varying degrees of success. Some places have special programs with therapy and equipment especially designed for children. There they receive educational, emotional, social and vocational training.
Some kids handle hospitalization and separation from parents during rehab, while others have a hard time. They may feel as though they are losing their loved ones. Parents are forced to face the fact that other people are caring for their children besides them. Parents need to be educated about SCI as well as the child. Children face the same issues as adults with SCI but they do so from a less mature place in life. Depression can come easily in these children. They may have a hard time seeing what their future holds. They often lack the insight to see that their SCI is permanent.
When back at home, children face even bigger challenges. Their sense of freedom dissolves as they are wheelchair-bound and they sometimes find that their friends will no longer play with them. Rehabilitation specialists are often called to schools in order to teach students and teachers about the child’s strengths and limitations. There are age-appropriate books for parents and children to read about life after paralysis.
Underlying all the difficulty is a child who just wants to be treated like other children. These are often the same children to participate in educating others about their injuries. Before the ADA act of 1990, kids were more isolated but now, schools, malls and other public places are more handicap-friendly. Kids in wheelchairs are seen on children’s television programs and kids can even buy dolls that are wheelchair-bound.
Children with spina bifida are paralyzed from the waist down. About 7 out of every 100,000 babies are born with the condition and some need surgery to correct bony abnormalities and to cover the exposed nerves. Some children with spina bifida also have hydrocephalus, or water on the brain that must be corrected as well. Some children with lower injuries are able to walk with braces and crutches, while others are confined to a chair. Bowel and bladder problems remain a difficulty in almost all children with spina bifida.
Even though spina bifida children know no other way of life, they can become frustrated and resentful around the time of kindergarten when their peers can go on the jungle gym or ride bicycles. It is up to the positive affect of the child and his or her parents to improve the self-esteem of the child as he or she faces the challenges of life in a wheelchair. Parental attitude has been found to be the single most important factor in the child’s adjustment.
Teens face special challenges as they try to measure up to peers. The pressure to conform can be intense and these teens can easily feel left out. They may, at the same time being dependent on others, try to gain some measure of independence. Spinal cord injured teens often have a rough time as teenagers coping with their changing bodies and the hormonal changes that go on. These kids tend to need help with taking notes in class and they can’t drive like their peers can. They may need an attendant just to get up and get ready for school in the morning. Dating is an especially difficult challenge. They usually can’t drive themselves and have a more difficult time expressing themselves sexually. Teens need to find outlets in extracurricular activities in order to feel as though they are truly having a good life.
Most families know little about paralysis and SCI prior to having a child with the condition. The chances of good adjustment to the disability depend a great deal on their family’s involvement and interest in seeing the child live up to his or her potential. This is why childhood rehab is often so family-oriented. Parents especially need to go through the guilt and grieving process before they can be helpful to their injured child. Parents often feel a great deal of sorrow for their child and for themselves as well. All their hopes and dreams about the child go out the window and different goals must be established.
Some parents become overprotective of their injured child and this can hinder the child’s independence. Injured children need, at an early age, to learn how to do as many things as possible themselves. They need structure and discipline from their families, and a healthy balance between dependence and independence. Pushing the child toward independence, no matter what their age, should be the goal of every parent of a child with disabilities.
Siblings must be considered as well. Parents need to let every child in the family know his or her importance within the family setting. The focus can’t just be on the disabled child or other children will begin to act out and misbehave. Finances become tight and families may need to locate to homes closer to rehab and to accessible schools. Siblings are just as affected as parents when one member of their family develops a spinal cord injury. Roles can change as younger siblings begin to take care of their older siblings who are disabled. This caretaking among siblings should be discouraged as it leads to resentment and anger between siblings.The road to adulthood and maximal independence is a difficult one for patients with spinal cord injuries who are injured as children or teens. It takes cooperation from all family members, the school system and their peer group to help the disabled teen reintegrate into society.