Answers to questions families often have about caring for their child with spinal cord injury

Spinal cord injuries (SCI) occur from accidents and occasionally from inflammation (transverse myelitis, an immune condition that attacks the spinal cord). The resulting issues depend on the location and extent of the injury. In general, injuries to the lower spine cause problems with walking and bladder and bowel control, whereas injuries to the cervical spine are more likely to cause problems with breathing, arm movement, and leg movement.

The immediate focus after a spinal cord injury is stabilization and recovery. A rehabilitation team is usually consulted while the child is still in the intensive care unit. The manifestations of spinal cord injury evolve over time. Initially, there is a period of spinal shock when the child is hypotonic with flaccid muscles and decreased or absent deep tendon reflexes below the level of injury. The second phase evolves over the next 1-12 weeks as reflexes return and spasticity results. New bowel and bladder problems may occur during this latter stage. Overlaid in this process is the possibility of some recovery, depending on the extent of the injury, and after edema decreases and contusions resolve.

If a spinal cord injury is present or suspected, usually an MRI (magnetic resonance imaging) of the spine is performed.

The prognosis will depend on the extent of the injury. Information from the clinical exam and the MRI can give insight into the ability to recover some function. A severed spinal cord will not show any recovery under current medical care, although there are stem cell trials underway. In injuries where the cord is not severed, some recovery is possible as swelling and hemorrhage from the affected area improve.

There is no genetic component or risk to other family members or future babies.

If your child has a spinal cord injury, they will likely be in an intensive care unit when therapies start. Then, as the child begins to recover, they often go to a rehabilitation center for continued therapy. Depending on the extent of the injury, regaining mobility will be a focus, whether independently or with support from a walker, crutches, or wheelchair. Alternate ways of achieving bowel and bladder continence may need to be taught. Individuals are taught to avoid staying in one position without moving to prevent skin breakdown. Breathing problems may be an issue. Stem cell therapies and other experimental trials are underway to help patients recover more function after a spinal cord injury. See Spinal Cord Injuries Clinical Trials (CenterWatch). Adaptive technologies may help improve functional capabilities. Many people who sustained SCIs enjoy participation in adaptive sports. See Adaptive Play and Assistive Technology.

The impact on your child and family will depend on the extent and location of the injury. It will likely require many changes in the family's life. Many individuals with spinal cord injuries lose their ability to walk independently. They may need a wheelchair or other equipment for mobility. Adjusting to the injury and how life has changed can be very difficult for the injured person and their family. Depression is common initially, and caregivers should watch for signs of depression. (See Depression (FAQ).) Support groups for both the child/adolescent and the family may be helpful for emotional support and information regarding accommodations that may need to be made. These are often available associated with your local hospital or rehabilitation center.

Let people know that you are still the same person, only now you are dealing with a medical problem. Everyone has a medical problem at some point in their life, and you can tell them that you are dealing with yours early in life.

The ability to self-catheterize depends on the type of spinal cord injury, the degree of physical impairment, and the developmental level of the child. A rule of thumb is that a child with the approximate level of a 5-year-old can learn independent cathing techniques. An occupational therapist can help you decide whether your child is ready by testing fine motor abilities and the child's understanding and ability to follow directions. If the child seems ready, they will be shown how to self-cath and then demonstrate their abilities. Sometimes, the process takes months to master, but it increases the child's independence when mastered.

Women who have had SCIs are often able to have children. However, they will usually require additional medical surveillance during the process. You can reassure your daughter and provide developmentally appropriate details if necessary.

The life expectancy of children following SCI depends on the level of injury and associated conditions. For instance, children who have had cervical injuries and are dependent on a ventilator are more likely to develop respiratory infections, such as pneumonia, which may lead to a shortened life expectancy. Untreated urinary tract infections and skin ulcers can also lead to a shortened life expectancy. Although there is no clear scientific data about life expectancy after SCI, if your child does not have these complications, life expectancy should be approximately normal. As your child gets older and is developmentally ready, involve them in self-care and monitoring for complications.