Congenital Heart Defects (CHD), also known as a Congenital Heart Anomaly or Congenital Heart Disease, are the most common form of birth defects in children and occur in one per cent of all live births worldwide, affecting over 40 million people globally.
Congenital Heart Defects are defects, present at birth, that affects the structure of the heart – interior walls, heart valves, or blood vessels of a baby’s heart.
A baby’s heart begins to take shape and beat during the first six weeks of pregnancy and it is at this stage, that some CHDs begin to develop.
The causes of these heart conditions are unknown. Research has shown that if there is a history in your family of heart defects, there is a 2-3% chance of having a child with CHD.
Prescription medications for illnesses such as epilepsy can also result in CHD in expectant mothers. Mothers with a viral infection like rubella during the first trimester of pregnancy are more likely to give birth to a child with a heart abnormality.
Expectant mothers should be warned by their doctors against consuming alcohol, or illegal drugs during pregnancy as these can increase a child’s risk of having a heart defect.
Women suffering from diabetes, or obesity have a high chance of giving birth to children with a CHD. Problems with genes or chromosomes in a child, such as Down syndrome can be another determinant.
There are many different types of congenital heart defects, falling mainly into these categories:
- Holes in the heart. Holes can form in the walls between heart chambers or between major blood vessels leaving the heart in certain situations, these holes allow oxygen-poor blood to mix with oxygen-rich blood, resulting in less oxygen being carried to your child’s body. Depending on the size of the hole, this lack of sufficient oxygen can cause your child’s skin or fingernails to appear blue or possibly lead to heart failure.
- Obstructed blood flow. When blood vessels or heart valves are narrow because of a heart defect, the heart must work harder to pump blood through them. Eventually, this leads to enlargement of the heart and thickening of the heart muscle.
- Abnormal blood vessels. Several congenital heart defects happen when blood vessels going to and from the heart don’t form correctly, or they’re not positioned the way they’re supposed to be.
- Heart valve abnormalities. If the heart valves can’t open and close correctly, blood can’t flow smoothly.
- An underdeveloped heart. Sometimes, a major portion of the heart fails to develop properly and cannot effectively pump enough blood to the body.
- A combination of defects. Some infants are born with several heart defects.
Your child’s doctor may initially suspect a problem because he or she hears a heart murmur during a routine exam.
A heart murmur is an abnormal sound that occurs when blood flows through the heart or blood vessels fast enough to make a sound that a doctor can hear with a stethoscope.
Children who suffer from CHDs may also present with bluish discoloration of lips, fingers, or tongue. Recurrent chest infections with rapid, or difficult breathing during activities, poor weight gain are other symptoms. Swelling in the legs, hand, abdomen, or areas around the eye can also be signs of a child with a heart defect.
Due to improvement and advancement in technology, doctors can now diagnose early enough if a child will be born with CHD. Most of the serious CHDs are detected during pregnancy with the help of fetal echocardiogram done at 18-22 weeks of pregnancy.
Others may be identified immediately after birth. However, the less serious lesions can go undetected until a child is older and begins to show signs and symptoms associated with CHD.
Some congenital heart defect may have no long-term effect on your child’s health and may safely go untreated. Certain defects, such as small holes, may even correct themselves as your child grows.
Some heart defects, however, are serious and require treatment soon after they’re detected. Some children and adults now have their congenital heart defects repaired using catheterization techniques, which allow the repair to be done without surgically opening the chest and heart.
Catheter procedures can often be used to fix holes or areas of narrowing. In procedures that can be done using catheterization, the doctor inserts a thin tube (catheter) into a leg vein and guides it to the heart with the help of X-ray images.
Once the catheter is positioned at the site of the defect, tiny tools are threaded through the catheter to the heart to repair the defect. Depending on your child’s condition, he or she may need surgery to repair the defect. Many congenital heart defects are corrected using open-heart surgery.
In open-heart surgery, the chest has to be opened. In some cases, minimally invasive heart surgery may be an option. This type of surgery involves making small incisions between the ribs and inserting instruments through them to repair the defect.
Sometimes, a combination of treatments is necessary. In addition, some catheter or surgical procedures have to be done in steps, over a period of years. Others may need to be repeated as a child grows.
It is important to seek treatment from professionals who are knowledgeable on CHD, a team represented by a cardiothoracic surgeon, paediatric cardiologist, cardiac anaesthetist, cardiac intensivists and cardiac nurses.
As one can imagine, these cardiac interventions and surgeries are expensive, costing approximately 1.2 million Kenya shillings (Ksh) for open heart surgery. In Kenya, children with CHD have benefited greatly from the National Hospital Insurance Fund (NHIF) that finances close to 500,000 Ksh for such surgical procedures, however, families are unable to raise the balance to have these surgeries and depend largely on hospital welfare and external financial donors.
Congenital Heart Defects impacts on all aspects of quality of life and therefore, psychological support and education for patients and their parents, guardians, relatives, or caregivers is a crucial factor in achieving better results from treatment.
Our vision in Kenya should be geared towards developing a paediatric cardiac care program and a centre of excellence for CHD to try and reduce the high costs related to the treatment and management of these defects.
Children suffering from heart defects need our attention, it is our duty to save these children and improve their quality of life as best as we can.
By Dr Sean Del-rossi, Consultant Paediatric Interventional Cardiologist at Aga Khan University Hospital, Nairobi