Congenital heart disease is the most common congenital abnormality affecting millions worldwide. These conditions affect many newborns each year and can vary widely in severity.

Understanding the complexities of these conditions can be overwhelming for parents and caregivers.

This resource aims to provide essential information, support, and hope for families navigating the journey of caring for a child with a CHD.

Congenital heart defects are abnormalities in the heart’s structure that are present at birth. These defects can range from holes in the heart to problems with blood vessels or heart valves.

The cause is multifactorial although some genetic predisposition and some syndromes are commonly associated with congenital heart defects.

Early detection through prenatal or postnatal screenings is possible, though some cases are not diagnosed until later in life.

Congenital heart defects can be categorised into two main groups:

• Cyanotic heart defects
  These defects cause low oxygen levels in the blood, often resulting in a bluish tint to the skin, lips and nails.
• Acyanotic heart defects
  These defects do not directly affect oxygen levels in the blood but can disrupt normal blood flow through the heart.

Severe congenital heart defects often reveal themselves shortly after birth or within the first few months of life.

Parents and caregivers should be alert for the following indicators:

• Cyanosis (bluish skin, lips or nails).
  This symptom may be more noticeable in certain skin tones.
• Rapid breathing or trouble breathing
• Swelling
  Look for swelling in the legs, abdomen, or around the eyes.
• Difficulty feeding
  Shortness of breath during feeding can lead to poor weight gain.

Symptoms in Older Children

However, congenital heart defects not detected in infancy may also manifest with the following symptoms in older children:

• Edema
  Swelling in the extremities, such as hands, ankles, and feet.
• Fatigue
  Unusual tiredness during physical exertion.
• Dyspnea
  Shortness of breath upon physical activity.
• Syncope
  Fainting during exercise or exertion.

Causes and Risk Factors

Causes of Congenital Heart Defects

Congenital heart defects arise from abnormalities in foetal heart development. While the precise aetiology of most CHDs remains unknown, genetic factors may play a role.

Complications

Children with congenital heart defects (CHDs) are at increased risk for various complications, and these can range from mild to severe, depending on the type of heart defect and its severity.

Some of these common complications include:

• Arrhythmias
  Abnormal heart rhythms.
• Developmental delays:
  Children with severe CHDs might experience delays in growth and development.
• Endocarditis
  Infection of the heart’s inner lining.
• Heart failure
  This occurs when the heart cannot pump enough blood to meet the body’s needs.
• Pulmonary hypertension
  High blood pressure in the arteries of the lungs.
• Stroke
  A blood clot that blocks blood flow to the brain.

Other Potential Complications

Congenital heart defects can be identified at different stages of life. A comprehensive evaluation to diagnose congenital heart defects entails:

• Prenatal ultrasounds to reveal potential heart issues
• Detailed foetal echocardiograms
• Electrocardiogram to measure the heart’s electrical activity
• Pulse oximetry to detect low oxygen levels (after birth)
• Echocardiography to diagnose heart condition
• Heart catheterization or coronary angiography
• Magnetic resonance imaging (MRI)

However, in well and asymptomatic children, some defects may be missed till later in life.

Treatment

Treatment plans for congenital heart defects are tailored to the specific condition and its severity.

Early and precise intervention is crucial for improving symptoms, extending life expectancy, and enhancing overall quality of life.

1. Medications

Medications are used to manage symptoms and complications associated with congenital heart defects. These may be administered alone or in combination with other treatments.

Common drug classes include:

• Anti-arrhythmic drugs
  To control irregular heart rhythms.
• Blood pressure medications
  Such as ACE inhibitors, ARBs, and beta-blockers, to regulate blood pressure and reduce heart strain.
• Diuretics
  To eliminate excess fluid from the body, easing the heart’s workload.

2. Surgery

In advanced stages of congenital heart defects, healthcare professionals may consider several surgical options for your child to improve their heart function and reduce symptoms:

• Catheterization
  This minimally invasive procedure involves inserting thin tubes (catheters) into blood vessels to reach the heart and repair defects without open-heart surgery.
• Heart surgery
  Open-heart or minimally invasive surgical procedures may be necessary to correct complex heart defects.
• Heart transplant
  Healthcare professionals may also consider a heart transplant in severe cases where other treatments fail.Children with congenital heart defects often require multiple procedures and surgeries throughout their lives.

Therefore, consistent follow-up care with a cardiologist is essential to monitor their condition and address potential complications.

Regular check-ups, including blood tests and imaging studies, are crucial for long-term management.

Prevention

Currently, there is no definitive way to prevent congenital heart defects (CHDs) as most cases occur spontaneously for reasons unknown, making them unpredictable.

Following your healthcare provider’s recommendations during pregnancy is crucial for reducing potential risks to your baby. This includes:

• Abstaining from alcohol consumption
• Avoiding recreational drugs
• Managing existing health conditions
• Refraining from smoking and exposure to secondhand smoke
• Undergoing recommended prenatal screenings

What Is the Life Expectancy of a Child With Congenital Heart Disease?

Living with Congenital Heart Defects in Children

Having a child with congenital heart defects can present challenges, but with proper management and support, it’s possible to help them maintain a good quality of life.

Parents can play a crucial role in managing their child’s condition by:

Preparing meals with a heart-healthy diet.
Seeking guidance from healthcare professionals before and during pregnancy if planning to start a family.
Openly communicating with healthcare providers about the child’s condition.
Understanding the specific heart defect and potential complications.

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