About a year ago, I volunteered at Camp Boggy Creek and had one of the most memorable weekends of my life. I am not sure what was different about this particular weekend, but it touched my heart more than any other that I have volunteered for. I met two young girls who have congenital heart defects. Those two girls are now like little sisters to me, and their outlook on life inspires me everyday. A congenital heart defect (CHD) is defined as an abnormality or combination of abnormalities in any part of the heart that is present at birth. Heart defects begin to develop during the early weeks of pregnancy when the heart is forming (2). As stated by the March of Dimes Foundation, about 1.4 million children and adults in the United States are currently living with congenital heart defects. With today’s medical advances, the prognosis for people with heart defects is very good.

According to the Nemours Foundation, about 8 out of every 1,000 newborns have congenital heart defects or disease. Heart defects are often detected almost immediately after the baby is born, or even before birth. Currently, there are more than 35 known congenital heart defects, and they generally fall into the following categories: holes in the heart, obstructed blood flow, abnormal blood vessels, heart valve abnormalities, or a combination of defects (3). For the most part, the cause of congenital heart defects is idiopathic. Genetics and environment are thought to play a role in a child developing a heart defect. Risk factors for congenital heart defects include: Rubella (German measles) during pregnancy, Diabetes during pregnancy, taking certain medications, and heredity (3). Since the 1990s, scientists have discovered around 10 different gene mutations that have the ability to solely cause heart defects.

About 30 percent of children with chromosomal abnormalities such as Down syndrome and Turner syndrome are also born with heart defects (2).

Physical activity is a suggested method for increasing quality of life in children with congenital heart disease (11). Overall, children with congenital heart defects and disease (CHD) go on to lead normal lives with little or no limitation. A study conducted in 2001 found that on several domains of health status, the emotional impact of problems is greater for children with CHD than for children without it (9). Using both self-reports and parent-reports, this study examined the health-related quality of life for children with CHD. Parents of children with CHD reported more problems that the children did themselves. Researchers attributed this to the tendancy of parents being over-protective of their children.

It is important to treat a child with CHD as normal as possible, and not hold them back from trying anything in life because of their condition. A study affiliated with the University of Toronto was conducted to examine the physical activity and sport participation levels in children with CHD. This study concluded that access to both segregated and inclusive sports, strategies to enhance self-efficacy and reduce fatigue, and changing how we define physical activity may increase participation levels so that children with CHD can benefit from positive, safe, and enjoyable physical activity experiences (11).

Of course, some children will need to limit the amount or type of exercise they participate in. A doctor is the person most likely to determine any physical activity restrictions for a child with CHD. It is stressed repeatedly, in various literature about CHD, that parents should encourage their children to be active rather than focusing on what he or she cannot do (3). Many pediatric cardiologists actually encourage children to stay physically active as it keeps their hearts fit. There are a small number of specific heart defects that require children to avoid demanding physical activities, such as competitive or contact sports (13). Congenital heart disease seems to have the biggest impact on the intensity of physical activity allowed.

Throughout my research, I found very few limitations for children with congenital heart defects. One of the few limitations that I came across in children with heart defects is that they should not run for long lengths of time due to their increased risk of fatigue and decreased lung capacity (6). For the most part, children with congenital heart disease are just as active as their healthy peers. However, during the hot summer or cold winter months they do not appear to be as active (10). Even though most children with CHD do not have physical activity restrictions, they may have perceived restrictions or anxiety about participating in certain activities. In order to avoid under-participation, it is important for parents and doctors to keep the communication lines open so that the children understand that they do not have restrictions. In those that do have restrictions, it is even more important to discuss the extent of those restrictions with them in detail (8).

Physical activity is also very beneficial from a social stand point. A child’s perceptual and motor experiences determine their physical and motor development. Those same experiences also contribute to their emotional, psychosocial, and cognitive development (1). For children who are chronically ill and trying to get better, staying physical active is usually not a priority. Being hospitalized for extended periods of time, or having restrictions placed on activity levels, can lead a child with CHD to have a negative perception about physical activity. Parents who are constantly worried and overprotective can increase these negative perceptions for a child. It is recommended that children be allowed to play with their peers in the most unrestrictive environment as possible. Avoiding unnecessary exclusion from sports can increase a child’s confidence and decrease apprehensions felt by their parents and other adult’s in his or her life (1).

Regular exercise provides many health benefits, and most importantly can help you to prevent various chronic diseases. Exercise is especially vital for children with congenital heart disease, because they are at risk for developing latent diseases due to real or perceived physical activity limitations (10). There seems to be a common misconception that children with congenital heart disease cannot, or should not, exercise at the same level as their healthy peers. A study published in the Australian Journal of Physiotherapy examined the physical activity levels of adolescents with congenital heart disease. The study found that adolescents who failed to reach the minimum recommended level of activity were at higher risk of acquiring chronic diseases linked to inactive lifestyles (10).

Children with congenital heart defects are typically diagnosed before they begin school. For the most part, children will not require special accommodations in the classroom. However, there are some signs to look out for in students with more complex defects. These signs include, but are not limited to: cyanosis or blueness of the lips and nail beds, increased fatigue, increased susceptibility to chest infections, and smaller in size or weight for their age (4). Physical stamina will obviously differ child to child. Even if a child does not have physical activity restrictions, it is important to note that they will most likely sweat more and have less energy and endurance than their peers (5). Communication is one of the most important factors contributing to a child’s academic success. Parents, medical professionals, administration, and teachers should be on the same page as far as the child’s condition is concerned.

Having to undergo a surgical procedure will definitely interfere with a child’s school life, because they will likely miss many days of school to recover. Teachers should take initiative to keep the child involved with the class even though they are not present. For example, I met a young boy at Camp Boggy Creek who has an extremely rare heart defect. He was constantly ill, and after having multiple surgeries his teacher setup a web-camera in the classroom so that he could watch lectures from the comfort of his bed while recovering. The web-cam was setup as a live feed so that he could participate in classroom discussions and ask questions if necessary. This approach also allowed him to stay in touch with all of his friends.

A non-discriminatory approach must be taken when integrating a child into the classroom. Adults must refrain from being overprotective as this will make the child feel isolated or different. Accommodation and adaptation do not mean special treatment, and most children appreciate being treated like everyone else (6). It is important for a child to be integrated into the class regardless of their limitations for positive social development. If a student has significant physical activity limitations, it is essential that teachers work towards making the student feel confident, comfortable, and included in the classroom. For example, a teacher could ask a student to be their helper so that the child knows that they play an important role in class (6).

Many heart patients experience scoliosis, because of the way their heart pumps and the amount of extra work the heart must perform to compensate for the defect. It is especially predominate in patients who have had open heart surgery. Every time the sternum is cracked for surgery the ribs become weaker and are not able to support the framework of the body as well. After talking with the girls from Boggy Creek, they explained to me that any limitations they face are usually as a result of their scoliosis. The risk of developing scoliosis that is associated with congenital heart disease is more than 10 times that of developing idiopathic scoliosis (7). Patients with congenital heart disease and surgically treated through a median sternotomy, separating the chest bone, show a higher prevalence of scoliosis. This study also concluded that patients operated on at an earlier age showed a higher prevalence for scoliosis (12).

I feel confident in saying that someone with congenital heart disease is capable of leading a healthy and productive life with proper medical attention and an active lifestyle. Of course some people with CHD have restrictions placed on their physical activity. However, most do not have any limitations, and their sedentary lifestyles are often a result from having overprotective parents, anxiety, and perceived restrictions. If self-reported low physical activity levels were due to a congenital heart defect alone, there should be a relationship between severity of cardiac condition and physical activity levels. However, a study found that although people with congenital heart disease were not likely to be active in the winter months, there were no significant differences in the activity levels between individuals with “mild” or “severe” heart conditions. Therefore, the results of this study suggest that behavioral factors influence activity levels in addition to actual physical limitations due to a heart defect (10).

I have witnessed first hand the implications of allowing a child to explore and try new things without limitations. One of the girls that I met at Camp Boggy Creek explained to me that she cannot participate in certain activities because of the scoliosis she developed from her heart condition, and not from the heart condition alone. She is a very bright 16 year old who is highly involved in her school and community. Her newest endeavors include trying out for her high school’s cheerleading squad and drag racing. That’s right, drag racing! She has of course received approval from her cardiologist and her family before participating in these activities. When she told me about the drag racing I thought she was insane, but then she said something that made a lot of sense - “If I can survive multiple open heart surgeries, I can survive drag racing.” She truly is a real life example of “If I can do this, I can do anything.”

1. Bjarnason-Wehrens, B., Dordel, S., Schickendantz, S., Krumm, C., Bott, D., Sreeram, N., et al.(2007). Motor development in children with congenital cardiac diseases compared to their healthy peers. Cardiology in the Young, 17(5), 487-498.
2. Congenital heart defects (2008, May). Retrieved March 21, 2009, http://www.marchofdimes. com/professionals/14332_1212.asp
3. Congenital heart defects in children (2008, October 4). Retrieved March 17, 2009, http://www.mayoclinic.com/health/congenital-heart-defects/DS01117
4. Congenital heart defects: Information for teachers (n.d.). Retrieved April 2, 2009, http://www.aboutkidshealth.ca/HeartConditions/Congenital-Heart-Defects- Information-For-Teachers.aspx?articleID=6544&categoryID=HC-nh4-06d
5. Congenital heart disease, exercise, and physical stamina (2003, February 12). Retrieved March 22, 2009, http://wo-pub2.med.cornell.edu/cgi-bin/WebObjects/PublicA.woa/1/wa/viewHContent?website=wmc+pediatrics&contentID=1786&wosid=sa
6. Escudero, M. (2008, September 22). Congenital heart disease and education. Retrieved March 18, 2009, http://www.corience.org/living-with-a-heart-defect/kindergarten-
   and-school
7. Herrera-Soto, J., Vander Have, K., Barry-Lane, P., & Myers, J. (2007). Retrospective study on the development of spinal deformities following sternotomy for congenital heart disease. Spine, 32(18).
8. Kendall, L., Parsons, J., Sloper, P., & Lewin, R. (2007). A simple screening method for determining knowledge of the appropriate levels of activity and risk behavious in young people with congenital cardiac conditions. Cardiology in the Young, 17(2), 151-157.
9. Krol, Y., Grootenhuis, M. A., Destree-Vonk, A., Lubbers, L. J., Koopman, H. M., & Last, B. (2003). Health related quality of life in children with congenital heart disease. Psychology and Health, 18(2), 251-260.
10. Lunt, D., Briffa, T., Briffa, K., & Ramsay, J. (2003). Physical activity levels of adolescents with congenital heart disease. Australian Journal of Physiotherapy, 49(1), 43-50.
11. Moola, F., Faulkner, G., Kirsh, J. A., & Kilburn, J. (2007). Physical activity and sport participation in youth with congenital heart disease: Perceptions of children and parents. Adapted Physical Activity Quarterly, 25(1), 49-70.
12. Ruiz-Iban, M., Burgos, J., Aguado, H., Diaz-Heredia, J., Roger, I., Muriel, A., et al. (2005). Scoliosis after median sternotomy in children with congenital heart disease. Spine, 30(8), E214-E218.
13. Your child's special needs (2009). Retrieved March 17, 2009, http://www.americanheart.org/presenter.jhtml?identifier=179
    
    

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