Living with a Congenital Heart Defect

“Your baby has a heart defect”
Words no new parent expects to hear. Yet those were the words of Priya’s doctor soon after she was born. And those words changed everything.
Unlike most newborns, Priya did not cry much. She also seemed to have no interest in feeding. Her parents started getting a little worried when relatives and friends began commenting that she looked pale. When six-week-old Priya was taken to her paediatrician for routine shots and she cried so hard that she turned blue, they became really alarmed. The next day, the doctors listened to Priya’s heart. The couple’s worst fears had come true. Their first child had a type of congenital heart defect called the Tetralogy of Fallot. People with this condition have four defects in their heart: a hole in the wall that divides the chambers, a thickening of the pulmonary artery, a thickening of the ventricular walls, and an overriding aorta. “Although the doctor explained everything to us, we heard little beyond, your baby has a heart defect”.
They were referred to a paediatric heart surgeon who told them surgery was the only way to repair their child’s heart. What followed was the most difficult period in the lives of Priya’s parents. After numerous tests, the date of the surgery was fixed. “Handing our child over to the surgeon on the day of the surgery was the toughest thing we have ever done,” Priya’s mother said. The parents knew that Priya would be in great hands, but even that couldn’t guarantee a positive outcome. When the doctor and his team emerged almost eight hours later and informed them the operation was a success, it was like their child was born again!
When finally Priya came home after discharge from the hospital, her parents heard something that they had not heard before from their daughter, a loud, hearty cry. Priya also began to feed properly. Soon, she was acting like a normal, healthy baby.
‘Congenital heart defect’ is another way of stating that your heart had a problem when you were born. It could be a hole in the heart, a valve defect, narrowed arteries, or a problem in the heart’s rhythm. Not all conditions are serious, and in some cases, no treatment may be required. Some conditions are, however, serious and maybe life threatening and could require either prolonged medical or surgical treatment.

What Are the Various Types of Congenital Heart Defects

The number of congenital heart defects is vast. Some of the more common defects include:

• Septal defects where there’s a hole between the two chambers of your heart. It’s commonly known as “hole in the heart”
• Coarctation of the aorta where aorta, the main artery of the body, is narrower than normal
• Pulmonary valve stenosis where the pulmonary valve that controls the flow of blood out of the lower right chamber of the heart to the lungs is narrower than usual
• Transposition of the great arteries where the pulmonary and aortic valves and arteries they are connected to have swapped positions
• Underdeveloped heart is that part of the heart that doesn’t develop properly, making it difficult to pump enough blood

Why It Happens

In most cases, there is no obvious cause of congenital heart diseases. However, some things increase the risks of the condition, including:

• Down’s syndrome – a genetic disorder affecting a baby’s normal physical development and leading to learning difficulties
• The mother suffering from certain kinds of viral infections, such as rubella, during pregnancy
• The mother taking certain medications during pregnancy
• The mother drinking alcohol or smoking during pregnancy
• The mother suffering from poorly controlled type 1 or type 2 diabetes
• Other chromosomal defects, where genes may be altered from normal or inherited

Symptoms of Congenital Heart Defects

Congenital heart diseases may have several symptoms, especially in children, including:

• Rapid heartbeat
• Rapid breathing
• Swelling of the tummy, legs, or around eyes
• Extreme fatigue and/or tiredness
• A blue tinge on the skin (cyanosis)
• Tiredness and rapid breathing when being fed

These problems may become noticeable right after birth, although mild defects might not cause issues until later in life. If you notice the abovementioned signs as a child or in your children, it is essential to see a paediatric cardiologist immediately.

Other Potential Health Problems

People with CHD may develop other health problems related to their heart. These problems depend on the type, number, and severity of heart defects. Problems that may require treatment include the following:

• Infective Endocarditis
  Infective endocarditis is an infection that develops in the layers of the heart. Left untreated, it can lead to problems like blood clots, heart failure, or heart valve damage.
• Arrhythmia
  Arrhythmia is associated with how your heart beats. The heart can beat too slowly, too fast, or irregularly, leading to a problem with the heart not pumping enough blood, thus increasing the risk of blood clots. Some individuals with heart defects can have arrhythmia related to their heart defect or as a result of past procedures to treat the heart defect.
• Pulmonary Hypertension
  Pulmonary hypertension refers to high blood pressure in the blood vessels that leads from our heart to lungs. Certain types of heart defects may cause pulmonary hypertension, forcing the heart and lungs to function harder. If pulmonary hypertension is left untreated, with time, the right side of the heart can become enlarged, leading to heart failure.
• Liver Disease
  Individuals with single ventricle heart defects have a higher possibility of developing liver diseases associated with their heart defect or as a result of previous procedures or treatments.

How Can Congenital Heart Defects Be Treated

Today, there’s good news for those babies who are diagnosed with congenital heart defects. Most of these defects can be either treated or helped through medicines, special devices such as artificial valves and pacemakers, or surgeries.
Heart transplants are often a possibility. These advances have helped millions of children all over the world with heart defects to survive to adulthood. Many of these surgeries have been performed before the age of two.
What About a Future With Congenital Heart Defects
Research is continuously being conducted regarding both the cause and the treatment of congenital heart defects. Several kinds of congenital heart defects may be repairable like in the case of Priya. Eight years later, Priya is living a normal life of a second-grader. She still has to be monitored, and she’s had surgery to insert an occluder septal device into her heart. But she runs around with her friends, her brother, and her pet dog. Priya embraces what she calls her “special heart”—and explains the reason for her scar to whoever asks her.
In many cases, however, these defects don’t have a long-term effect on a child’s health and in some cases, may not even be identified until adulthood. It’s essential to understand as much as you can about the CHD and the problems it may cause. The following guidelines provide recommendations on how to take measures to live the most normal and healthy life possible.

• Ask questions. Learn the name(s) of your CHD
• Be aware of your medical history thoroughly, including surgeries you may have undergone
• Learn the risks you are likely to face as an adult
• Know how to identify signs of a new heart problem
• Maintain a list of any medications you’re taking, their dosages, and what they are for
• Ensure that any diagnostic tests, medical procedures, and surgery for complex ACHD are performed by your ACHD centre
• Exercise—but discuss the exercise programme with an ACHD cardiologist to know the ones that are appropriate for you
• Consult your doctor to know what forms of birth control are safe—and check with an ACHD specialist before you become pregnant