Spinal Cord Injury Update
Winter 2005: Volume 14, Number 1
SCI in Children and Teens
An Interview with Dr. Terry Massagli
Terry Massagli, MD, is associate professor and residency program director in the UW Department of Rehabilitation Medicine and specializes in spinal cord injury rehabilitation at Children's Hospital and Regional Medical Center. Children's, along with University of Washington Medical Center (UWMC) and Harborview Medical Center (HMC), is part of the Northwest Regional Spinal Cord Injury System, one of 16 federally funded Model SCI Systems in the country.
- How common is SCI in children and teens?
- What are the causes and types of traumatic SCI in children?
- Why do some teens go to Children's and others go to adult hospitals like UWMC and HMC?
- What medical problems are unique to childhood SCI?
- How well do children and adolescents adjust psychologically to SCI?
- How is rehabilitation care for kids and teens different than care for adults?
- Do children with SCI grow up to be happy, well-adjusted adults?
- When does a patient with SCI leave pediatric care and enter the adult care system?
- How can we prevent SCI in children and adolescents?
At Seattle's Children's Hospital and Regional Medical Center, Dr. Terry Massagli talks with her patient, 15-year-old William Northern, who has a spinal cord injury.
- How is rehabilitation care for kids and teens different than care for adults?
The treatment approach must naturally be appropriate to the child's developmental stage. Young kids cannot achieve the same level of independence initially after leaving rehab as an older child, but will catch up in later years. For instance, a 4-year-old with paraplegia will not be independent in bladder and bowel management for years. He may start to participate in these at about age 5-8, but will likely need some supervision and reminders for care until early adolescence.
Kids under 8-10 years of age don't have the upper body power to do things like transfers, pressure relief or manual wheelchair propulsion and may benefit from a power wheelchair for community and school use until they are older. In very young kids, therapy gets done in the context of handling and play, as opposed to prescribed strengthening or endurance programs. Little kids can get by without doing too much pressure relief but really need to be educated about it later, at about ages 8-10, in order to incorporate it into daily function. Preventive practices such as these can be especially challenging to instill in kids and teens.
After discharge, as kids grow up with SCI, we need to step back now and then to review SCI physiology and bladder, bowel and sexual function issues, because they did not learn all this when they were first injured. We need to help parents gradually transition care to the child. Adjustment issues may crop up years after the injury, as may risk taking behaviors such as smoking, drug use/abuse, or alcohol use. Adolescents always have lots of questions about sex, and are often afraid to ask. I've had teachers tell me that "someone" put a question in the anonymous question box asking if a person could have sex after SCI. Teens need to have their privacy respected and often need a program-wide approach to problem behaviors to enhance compliance with therapies, including a pediatric psychologist and a therapeutic recreation specialist.
The hospital stay can be a huge hit to school attendance, and it is unrealistic to think that even with tutoring and nightly homework a child will be able to keep up with school work during inpatient rehab. At Children's, we put a lot of emphasis on helping the child to prepare for the return to school-physically, socially, academically-and to be successful there.
- Jackson AB, Dijkers M, DeVivo MJ, Poczatek RB. A demographic profile of new traumatic scis: change and stability over 30 years. Arch Phys Med Rehabil 2004;85:1740-8
- Devivo MJ, Vogel LC. Epidemiology of sci in children and adolescents, J Spinal Cord Med 2004;27:S4-S10.
- Anderson CJ, Vogel LC, Betz RR, Willis KM. Overview of adult outcomes in pediatric onset sci: implications for transition to adulthood. J Spinal Cord Med 2004;27:S98-S106
Model SCI Systems national data indicate that about 20% (2,200) of all new traumatic SCI cases per year (about 11,000) occur in people under age 20, with about 2%-5% (250-500) in kids 0-15 years old, and another 14%-18% (1500-2000) in the 16-20 age group.1 However, these numbers do not include data from the Shriners Children's hospital system, which cares for most pediatric SCI in the large urban areas of Philadelphia, Chicago, and Sacramento, so actual numbers are likely higher.
These numbers also leave out children with non-traumatic SCI from medical conditions such as transverse myelitis, spinal cord infarct and spinal tumors. Such patients have virtually the same rehabilitation needs as those with traumatic SCI. In the 16 years I have been at Children's, we average about 10 new patients with spinal cord injury or disease each year; about half of these have traumatic SCI.
The top etiology (cause of injury) for all ages (adults and children) is motor vehicle crash (MVC). The second highest cause varies by age group: medical/surgical complications in children 0-5 years; violence in ages 6-12; sports in ages 13-15; and violence again in ages 16-21. In persons over 21, falls are second, followed by violence. Looking at the 0-15 age group as a whole, the top three causes are MVC (44%), followed by sports (23%) and violence (21%).2 Sports and violence drop off dramatically as a cause of injury in older age groups, and falls become more common.
Over the last 30 years, the percent of injuries due to MVCs has increased in the 0-15 year age group while violence has decreased. Within sports, diving has remained the top cause, but the percent of cases due to both diving and football have decreased, while those due to skiing have increased. In the 1970s, 6.4 % of all new cases occurred in kids ages 0-15, but this has steadily declined to 2 % in the current decade.
There is a higher incidence of paraplegia than tetraplegia (quadriplegia) (65% vs. 35%) in kids under 12, which reverses to the typical adult ratio (45% vs. 54%) in teens. Kids age 0-5 have about 67% complete injuries, and from 6-12 about 62% complete. These percentages decline to the typical adult ratio (about 56% complete and 44% incomplete) in older groups. The greater occurrence of complete injuries in younger children reflects the relatively less stable vertebral column compared to the large size of a child's head. The bones are not yet completely ossified (hardened) and the ligaments and spinal muscles are not as strong as in adults, resulting in more damage to the spinal cord with trauma.
While Children's will provide care for young adults up to their 22nd birthday, much of the decision depends on whether the teen has finished high school. Patients between 15 and 18 years old who are still in high school can benefit from the educational resources at Children's, where full time teachers employed by the state of Washington provide ongoing tutorial support during the rehabilitation stay and help plan for the child's return to school. If teens have completed high school, the vocational rehabilitation services at HMC and UWMC may be more appropriate. But we encourage these families to visit Childrens, HMC and UWMC to see where they feel they will be most comfortable during the 5-8 weeks of probable inpatient rehabilitation stay.
Many of the special problems in pediatric SCI relate to the fact that children haven't finished growing. A prime example is scoliosis (abnormal curvature of the spine), which occurs in virtually 100% of kids injured before puberty. Bracing can help to improve sitting, balance and function, but it does not reduce the extent of scoliosis, and children need to be followed by orthopedic surgeons to determine if surgical fusion may be needed.
Another special issue is bladder capacity. Children do not develop a normal adult-size bladder until about age 10. If a child is injured at age four, the bladder may not grow sufficiently to achieve adult capacity, resulting in incontinence or other problems when the child grows up. Fortunately, bladder augmentation resolves this problem and has been a huge benefit for many of my teenage patients.
Children have a lower incidence of heterotopic ossification (abnormal outgrowths of bone) than adults and a higher incidence of hip misalignment. Adolescents are especially prone to immobilization hypercalcemia-an elevated level of calcium in the blood that can cause nausea, fatigue, depression or kidney stones if untreated.
A large number of our patients with high tetraplegia who use ventilators have opted for placement of phrenic nerve pacers (surgically implanted devices that stimulate the nerves to the diaphragm), a less cumbersome and more appealing alternative to ventilator tubing. The children still have back up ventilators for night time use, periods of illness, or in case of pacer failure.
A child's adjustment is strongly affected by the parents' ability to cope, so it's essential for us to address the parents' emotional needs as well as the child's. A certain amount of grieving for lost hopes and dreams is normal for both child and parents, and our rehab psychologists work with families to help them acknowledge these feelings and move on to the practical concerns of rehab and planning for a positive future.
There have been no studies examining whether children have a higher or lower incidence of post traumatic stress disorder, depression, or adjustment problems after SCI compared to adults. However, adolescents are probably at greater risk than younger children for psychological concerns after SCI because of issues of sudden dependency, concerns about appearance and sexual function, and lost roles such as participation in team sports. We make it a priority to reconnect kids to their peers, activities, and adapted sports as soon as possible because participation in the community is a key factor in making a good adjustment and sets the stage for life satisfaction in adulthood.
We also monitor the child's reaction to disability as he or she ages, because new concerns may arise at crisis points (family or school stress) or at later developmental stages. Our psychologists can provide ongoing consultation or referral for counseling for children and teens via our outpatient clinic.
Certainly they can. Research shows that positive outcomes and life satisfaction in adulthood after childhood SCI are more strongly related to functional independence and involvement in community-factors over which patients and families have some control-than to injury level or severity.3 It is our job in rehab to help families realize this and plan for the future by maximizing education, participation, and independence.
Persons injured as kids, along with their support systems (counselors, family, etc.), can begin early on thinking about jobs that will be within the child's capacity to perform and about the associated educational requirements. It is interesting to note that adults who sustained SCI as children attain higher education levels than adults in the general population. Furthermore, persons with childhood injuries have a higher employment rate than those injured as adults.
A parent once told me the most valuable thing she learned when her son was on rehab was that once the physical barriers were removed, there was so much he was still able to do. She was a model parent for making their home and transportation accessible to him and for advocating for him in school and sports. He's now a successful college student and competitive wheelchair athlete.
We tell families and patients that they can stay in our system until the day before their 22nd birthday. However, we strongly encourage them to transition their care at the time of high school graduation. We often begin by a referral to UWMC for a specific consultation, such as vocational rehab or urology. Then we get them to transition for all their care. That said, I have a couple of patients who are off at college and older than 22 who still ask me to sign their supply prescriptions each year.
(For resources about transitioning to the adult health care system, go to the UW's Adolescent Health Transition Project http://depts.washington.edu/healthtr/ or call 206-685-1358).
Clearly prevention efforts are working, as seen in the decline in diving and football injuries. Since the greatest frequency of injury is related to the motor vehicle, the largest payoff will be with proper restraint use. Adults and teens and older kids need shoulder lap belts. Kids under 40 lbs need to be in a car seat, and those weighing 40-70 lbs should use a booster seat to allow proper placement of the seat belt across the clavicle and pelvis, to avoid injuries to the neck, abdomen, and lumbar spinal cord.
For more information about the SCI clinical services at Children's Regional Hospital and Medical Center, call the Rehabilitation Clinic at 206-987-2180.
Adolescent Health Transition Project , Center on Human Development and Disability, University of Washington, Box 357920, Seattle, WA 98195. 206-685-1242; firstname.lastname@example.org ; http://depts.washington.edu/healthtr/ . This program is designed to help smooth the transition from pediatric to adult health care for adolescents with special health care needs.
Betz RR, Mulcahey MJ (eds.) The Child with a Spinal Cord Injury. Rosemont, IL. American Academy of Orthopedic Surgeons, 1996.