Caring for children and adolescents with Congenital Heart Disease

Children born with a Congenital Heart Disease require special care and attention, for the hole in heart treatment. Especially the caretakers, who need to be sensitized to their needs, even if it’s heart hole treatment without surgery.

Here are a few tips for parents, guardians and caretakers of children and adolescents who have been diagnosed with a Congenital Heart Disease.

Growth & Nutrition

• Being regular with the doctor’s appointments, both the cardiologist and primary care physician. Regular health check-ups are an important part of ensuring the child’s optimal growth.
• Unlike adults with cardiac disease, children who’ve had hole in heart treatment require food with a higher calorie content. But giving large meals at once might make them tired, therefore breaking them up into smaller portions at shorter intervals ensures they get the nutrition they need without exhausting them.
• Children with congenital heart disease, particularly left-sided ones tend to grow and gain weight at a slower rate. This tends to get corrected following surgery for the defect.

‘Tet spells’ and Oxygen Therapy

• In certain cyanotic heart diseases like Tetralogy of Fallot, the child tends to experience ‘tet spells’ or ‘hyper cyanotic’ spells. The child would suddenly ‘turn blue’ around the fingers and mouth, indicating decreased oxygen flow to the peripheries due to increased mixing of de-oxygenated blood with oxygenated blood. With infants, the first signs may be inconsolable crying or irritability.
• Tet spells can occur at anytime, most notably in the mornings, after periods of physical activity, emotional stress, fever, dehydration. Although the most common age group is between 2-4 months, it can occur at any age.
• The first thing to do in this situation is to put the infant /child in a ‘knee-chest position, or a squat. This allows better blood flow from the peripheries to the lung. Sometimes, toddlers instinctively squat when they are experiencing a spell.
• In case squatting does not resolve the spell, a child might require oxygen in the form of external tubes attached lightly to their nose or a mask, or hospitalization in severe cases.
• To prevent tet spells from occurring, it is important to avoid dehydration and high temperatures when they have a fever.

Infections & Physical Activity

• Children with congenital heart disease are at a higher risk of acquiring infections of the lung and heart – most commonly infective endocarditis, which is an infection of the valves in the heart.
• To prevent the child from getting infected, dental care and hygiene is a must. Regular appointments with a dentist should be set up to ensure the same.
• It’s imperative that children and the adults around them have got all the recommended vaccines. Keeping a track of the child’s medications, and have them take it in a timely manner is necessary.
• Most children with congenital heart disease usually have no issues with exercise and can do so as much as any other kid. Whether they’ve had heart hole treatment without surgery or with surgery, speaking to the doctor before allowing the child to start any form of play or exercise is important.

At the Foundation, the HOPE team stays in constant touch with families, to monitor the health of every child that we have supported. Urging families to go for regular follow-ups, the well-being of GF children is the utmost priority for the entire team.