February is Heart Awareness Month

Children and Congenital Heart Disease

H&S

Infants born with a congenital heart condition in 2013 are more likely to have better results, both cardiac and developmental, than those infants born a several years ago. This is due to a better understanding of congenital heart disease (CHD) and to medical improvements and studies. These studies are now being done on adult patients, and results collected are helping to provide information to prepare families of children who are newly diagnosed.

Even though, results have only been collected in recent years they are finding that children with cardiac problems are now living well into adulthood. This is due to the development of medical procedures on the pre-and post-operative care, school environment and other factors that might affect the child’s development, both physically and mentally.

Being a parent to an infant or toddler with a heart condition can be very different from being a parent to a school-aged child, likewise being a teen-ager with the same condition. As teenagers reach adulthood, they are faced with new issues, physical and social (for example physical frustration, sexual maturity, or accepting limitations), that further affect their care and well-being.

Your family support system and the health care team can help you and your child face adulthood by understanding their concerns, and assist by developing coping strategies that your child can take with them into adult years.

Physical activity:

Many children with congenital heart disease go on to lead full, normal lives, though sometimes with restrictions.

However, it does depend on how much and the type of exercising your child can do. This is mainly for children with simple congenital heart disease; as their conditions can in many cases be corrected, either permanently or well enough to enable virtually trouble-free living. In other cases, children are advised not to participate in strenuous sports.

Always the importance is on the overall health and recovery benefits of physical activity, with a focus on what a child can do, as opposed to what they cannot do. Endurance sports are usually alright, and if it’s not clear how involved a child can get in a given sport. The doctor should also do regular exercise tolerance reassessment as the child grows to see whether the condition is improving over the years to an extent that other sports may have become an option.

Concern over physical activity:

  • Doctors suggest that children with certain heart conditions avoid certain types of physical activity, generally competitive and contact sports.
  • These limits depend on how severe the heart condition is.
  • The concern is that the interaction might physically further damage the heart or that the intense activity can over-excite the heart.
  • When the body is working hard, adrenaline is released into the blood stream.
  • This too has the potential to irritate, and potentially further damage, the heart.

Helping your child cope with physical limitations:

  • It can be tough, especially for older children, to be unable to participate fully in sports and other physical activities.
  • They will be frustrated by not being able to have fun with their friends and may feel left out.
  • This will be especially difficult for children diagnosed later in life who had previously excelled in sports.
  • It’s critical that they understand, however, why it is so important to choose their activities carefully and observe athletic activity restrictions, particularly if they “feel fine” and don’t seem to have symptoms.
  • As a parent, you can encourage your child to participate in safe sports, such as swimming, golf, and house leagues.
  • Your doctor will be able to confirm which sports are acceptable for your child. Everyday family activities are also safe.
  • You can also encourage your child to develop skills in other areas and engage in alternate activities that can be equally satisfying.
  • If your child is quite young, you will need to make sure that teachers at your child’s school are aware of his physical activity restrictions.
  • Meet with your child’s teachers or write a letter to the school, or ask the doctor or nurse to write one.
  • With advance notice, many teachers can arrange for alternate activities that will help your child feel included.

Helping your child get used to new physical ability:

  • Many children, after treatment, find themselves feeling much better and able to participate in activities they were previously unable to do.
  • Some children may be afraid of engaging in activities that before were “off limits”.
  • As a parent, encourage your child to gradually participate in activities that appeal to them. You too may also need to overcome some fear about seeing your child engage in more vigorous activity.

Outdoor activity and sun exposure

  • We all know how important it is to have sun smarts. No doctor will encourage anyone to actively sun tan, or spend extended amounts of time in the sun, simply because of the risk of skin damage and skin cancer.
  • There are also added risks for some children with CHD who have to take medications, like amiodarone, that make the skin more sun-sensitive.
  • This can cause the skin to be discoloured if exposed to the sun.

It is best to play it safe and follow these guidelines:

  • Keep away from sun exposure at peak sun hours
  • Stay in the shade as much as possible
  • Cover up with hats and long-sleeved shirts
  • Use sun block with a high SPF

Pumped

http://www.heartandstroke.com/site/c.ikIQLcMWJtE/b.3484341/k.5F5D/Pumped_Magazine_for_Kids.htm

For More information or to participate in your countries foundation – please visit the following links:

www.heartandstroke.ca

www.ottawaheart.ca/heart_disease/cardiomyopathy.htm

www.heart.org/

www.bhf.org.uk/

www.heartfoundation.org.au/

www.heartfoundation.org.nz/

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