The Jooay App: Promoting Participation in Leisure
This newsletter presents the Jooay app, a free app that connects children with disabilities and their families to leisure opportunities.
Congenital heart disease (CHD) is the most common congenital malformation, accounting for about 1% of live births. The word “congenital” means existing at birth. A congenital heart defect can involve the walls or valves of the heart, or the arteries and veins near the heart. These structural anomalies can disrupt the normal flow of blood through the heart, causing it to slow down, go in the wrong direction or to the wrong place, be blocked completely. Often, no known cause is found, but viral infections and certain inherited conditions or genetic syndromes can increase the risk of a baby to develop CHD. Fetal exposure to drugs or alcohol may also increase the risk. There are many types of CHD, ranging from simple to very complex.
Overview For Parents
- Congenital heart disease can be life-threatening. If your child experiences specific symptoms such as shortness of breath or fast breathing, cyanosis, fast breathing, poor feeding (especially in infants), poor weight gain and fatigue during physical activity (in older children), you should seek medical attention.
- Despite increased survival, children with CHD are at risk of brain injuries and neurodevelopmental challenges. Follow-up with your child’s cardiologist, pediatrician, neurologist, and therapists is essential.
- Ongoing research is aiming at improving long-term outcomes in children with CHD.
Overview For Clinicians
- Congenital heart disease carries high rates of morbidity and mortality. Several modifiable risk factors are under investigations to optimize medical and surgical care.
- The primary issue of maturation arrest rather than cellular loss highlights the potential for brain recovery from injury. The failed attempts to improve neurodevelopmental outcomes through modifications of cardiopulmonary bypass necessitate a paradigm shift towards fetal, pre- and postoperative opportunities to improve brain health in infants with CHD.
- Randomized controlled trials are needed to test the utility of certain neuroprotective agents
Newsletters
COACHING in Childhood Disability
Coaching interventions provide education and guidance to individuals. This newsletter describes different types of coaching for children with disability and their families, approaches that are commonly used, and the level of evidence for coaching.
Congenital Heart Disease: What do we know today?
Understanding Congenital Heart Disease can be complex. This newsletter provides an overview of current knowledge, classification, risks and considerations for treatment.
Articles
Uncovered: infant open-heart surgery and the mental well-being of parents
This study looked at the mental health and wellbeing of children with congenital heart problems and the stress levels of their parents.
Blood flow and the brain – how infant heart surgery impacts brain health
Researchers at the Harvard School of Public Health studied brain health following heart surgery in very young infants. They found that approximately one in six of the infants showed problems in their ability to regulate blood flow in the brain.
Is heart surgery related to longterm neuromuscular problems?
This study looked at whether having open heart surgery as a child was linked to neurologic and motor problems later in life. To find this out, a group of survivors of infant open-heart surgery was evaluated by scientists. The scientists found that about 25% of the children had some type of neurological delay.
Open heart surgery in newborns: what are the challenges?
Children with congenital heart defects are at high risk for certain developmental delays as they reach school age. It is important that the child’s progress is carefully monitored by the cardiology team at key points in the child’s development, so that children with difficulties in particular domains can be referred to specialists for appropriate interventions and resource supports.
Are children with heart conditions receiving the rehabilitation services they NEED?
The purpose of this study was to describe the educational and rehabilitation services being provided to young children with heart conditions who had had open-heart surgery.
Is infection linked to brain injury in babies born with CHD?
Brain injury after birth is common for newborns with congenital heart disease. That is because heart disease contributes to immature brains, similar to the brains of babies who are born prematurely. Since infection increases the risk of brain injury in premature newborns, it seems reasonable to think that it might also increase the risk of brain injury in newborns with congenital heart disease. However, a study conducted by American researchers failed to find a significant link between infection and later brain injury in newborns who had undergone surgery to treat heart disease.
A genetic database can help further our understanding of the inheritance patterns of congenital heart disease
Congenital heart defects make up the largest category of malformations in Canadian children and are a significant cause of death in infants under one. However, improved detection, intervention, and care strategies are now allowing more individuals born with these defects to survive into adulthood and have children of their own. A better understanding of the genetic factors that predispose an individual to congenital heart disease is essential to not just treatment but also prevention. The database compiled in this study will continue to be augmented with information from more patients, but it has already shown that a particular type of heart defect, left ventricular outflow tract obstruction (LVOTO), is strongly linked to the inheritance of two or more genes.
Genetic variation in folate metabolism may be linked to inherited heart defects
Folate is an essential ingredient for healthy embryonic development. It is a vitamin that naturally exists in many foods, however, not all new mothers always had access to it. In 1998, Canada mandated that all grain products should incorporate Folic acid, the synthetic form of folate. After ingesting folate or folic acid, the mother’s body converts this vitamin into an active form that is crucial for embryonic development. It helps cells divide and helps build and maintain DNA.
Brain abnormalities are present before birth in many children with congenital heart disease
This study adds to emerging evidence of a prenatal origin of brain abnormalities in children with CHD. The new knowledge may allow practitioners to target neurodevelopmental therapies at a very early age, thus improving long-term outcome among children with CHD.