5th Edition - 2015 UPDATE
Stroke happens at any age. Current rates for stroke in children are >1 in 2,500 live births (among newborns, defined as age 0 to 28 days), and 2-5 / 100,000 among children age 28 days to 18 years. Stroke in infants and children has become increasingly recognized and their care specialized in some areas of Canada. The primary cause of stroke in children, unlike in adults, is not cardiovascular disease or atherosclerosis, and outside of the neonatal period is less likely to be embolic in origin than in the adult population. There are very different pathophysiologies that lead to stroke in neonates and children, as well as developmental factors that are involved in the growing and maturing brain.
Stroke in children is a different disease process than in adults and children affected by stroke require an individualized approach that is ongoing throughout their entire development. This means that the outcomes of individual strokes in children cannot simply be determined by location of damage and the initial physical manifestations of the damage, but also must be evaluated with a developmental lens in mind. The long-term outcomes of children who have had a stroke must be monitored for many years, as infants and toddlers may not have the full impact of the stroke realized until their adolescence or young adult years.
Pediatric stroke has not been subjected to the depth and breadth of research that is so clear in the adult literature. There is a lack of clarity regarding timing of rehabilitation interventions, intensity of interventions and duration of therapy in children. While the limitations in the literature are clear, it is also encouraging to see that quality research is beginning to surface in key areas of therapeutic intervention and long-term outcomes. There is a larger body of evidence that has emerged in the pediatric cerebral palsy literature addressing some of the same issues, and some of this evidence may be applicable to children with stroke. As part of future editions of these stroke best practice recommendations, an in-depth review will be conducted of the cerebral palsy literature to determine applicability and generalizability to pediatric stroke.
A key message emerging from the current literature is that it is now increasingly clear that children have an important frequency of physical, cognitive and mental disability after stroke. It is important now that systems of care be developed to meet the ongoing rehabilitation needs of children who have had a stroke.
In addition, the psychological well-being of the entire family is an important component of pediatric stroke care. In perinatal stroke, and many childhood strokes, a definitive cause can usually not be identified and diagnosis is often delayed. Mothers are also bombarded with information (and misinformation) during pregnancy on what they should and should not do. This combination leads many mothers of children with perinatal stroke to assume that they are somehow responsible for their child’s brain injury and its consequences. Such misplaced guilt is very common and can be extremely disabling. Misplaced blame on doctors and others is also common. Such psychological complications in the parents add to the overall morbidity incurred by the family. Therefore, parents and family members should be included in goal-setting and developing individualized care plans for each child who has had a stroke, and offered appropriate support throughout the recovery journey.
The pediatric stroke section of the Canadian Stroke Best Practice Recommendations provides a description of the current state of evidence for pediatric stroke, to assist in treatment planning and goal setting, and also to raise awareness of the gaps in knowledge that should drive ongoing research efforts in this area. The goal of stroke research in children is to build upon the key studies that have already begun in the field of pediatric stroke, and to generate evidence to guide best practice for efficacious stroke diagnosis, treatment and recovery. There is also a need for stroke systems of care to be built to support children with stroke, support families, and to address issues of initial and ongoing access to treatment and rehabilitation services to meet the changing needs of children with stroke as they grow and develop.
There are three populations of pediatric patients with brain injury due to a cerebrovascular lesion (stroke) to consider for rehabilitation, based on age and presentation:
- Children (1 month – 18 years) with acutely diagnosed arterial ischemic stroke, cerebral sinovenous thrombosis or hemorrhagic stroke (diagnosed acutely and hospitalized at an acute care hospital);
- Neonates (term birth to 1 month age) with acutely diagnosed arterial ischemic stroke, cerebral sinovenous thrombosis, or hemorrhagic stroke (diagnosed acutely as stroke and hospitalized at an acute care hospital);
- Presumed Pre-perinatal Ischemic Stroke (PPIS) with diagnosis in later infancy, typically with recognition of congenital hemiparesis (usually diagnosed as out-patient).
- Many of the principles and recommendations contained in each section of the Canadian Stroke Best Practices Stroke Recommendations apply to people with stroke at any age and should be reviewed for their relevance to treating children with stroke.
- It is important to emphasize that children who have had a stroke may ‘grow into their disability’. The full impact of a stroke in a child may not be known for years as the child grows and matures and reaches various developmental stages. There may be ongoing and emerging needs throughout growth and development. Therefore children who have experienced a stroke require long-term monitoring and follow-up throughout maturation to ensure optimal achievement of developmental, functional and psychosocial potential.
- Childhood stroke affects the whole family and parental guilt or blame is common. The whole family unit should be considered in setting up pediatric stroke programs and support networks.
- Pediatric programs should integrate closely with the child’s school for continuity of programs and therapy plans, as well as with other coaches and extracurricular activities (both inpatient and outpatient options).
- Management of Stroke in Infants and Children (American Heart Association Scientific Statement)
- Calgary Pediatric Stroke Program
- International Paediatric Stroke Study
- Holland Bloorview Kids Rehabilitation Hospital
- Aphasia Institute
- International Alliance for Pediatric Stroke (IAPS)
Patient and Family Resources
- A Family Guide to Pediatric Stroke
- Taking Charge of your Stroke Recovery
- Post Stroke Checklist
- Heart and Stroke Foundation Healthy Kids
- Childhood Stroke
- IAPS Pediatric Stroke Fact Sheet
- Stroke in Children – Child Neurology Foundation
- Holland Bloorview Kids Rehabilitation Hospital
- Aphasia in Children
- Stroke in Young Adults
- The Internet Stroke Center
- National Stroke Association
Patient and Family Support Organizations