Congenital means that is born with. Congenital heart defects/ diseases(CHDs) are conditions that affects the heart’s shape or how it works, or both.Congenital heart defects happen because of incomplete or abnormal development of the fetus' heart during the very early weeks of pregnancy.CHDs are the most common types of birth defects, conditions that can cause problems in overall health, how the body develops, or in how the body works.Critical congenital heart disease (also called CCHD) is group of the seven most severe congenital heart defects. They may affect the shape of a baby’s heart, the way it works, or both. Babies with CCHD need treatment within the first few hours, days or months of life. Without treatment, CCHD can be deadly. It is estimated that 8-9 in 1000 babies (hardly 1 percent or 4,000 babies) is born with a heart defect in Kerala each year. Out of this about 1,000 babies each year are born with CCHD. Experts opinion that many heart defects don’t need immediate treatment or can be fixed easily. But some, like CCHD, can cause serious morbidity or death.
If your paediatrician thinks that your baby has a congenital heart defect or critical congenital heart (CCHD), s/he can refer you to a pediatric cardiologist. This is a doctor who treats babies and children with heart problems. As per the current program your baby may be registered in the web portal so that the child is referred, followed up and tracked based on the guidelines and protocol.
Heart defects can affect different parts of your baby’s heart, including:
Heart defects can affect your baby’s heart functioning, blood flow with in the heart and to body parts, causing blood to:
These heart defects are part of CCHD
In this condition, the left side of the heart doesn’t form fully, and the heart can’t properly pump blood. A baby with HLHS needs open heart surgery or a heart transplant. Open heart surgery is when the chest is cut open and surgery is done on a part of the heart. A heart transplant is surgery in which a damaged heart is removed and replaced with a healthy heart from another person. Some babies also need medicines to make their heart muscle stronger, to lower their blood pressure or to help the body get rid of extra fluids.
In this condition, a baby’s heart’s pulmonary valve doesn’t form properly. This means that enough blood can’t flow from the heart to the lungs. Treatment may include medicines to help blood flow, open heart surgery or heart transplant.
Babies with this condition have heart defects that prevent enough blood from reaching the lungs. This means the blood that’s pumped to the body may not have enough oxygen. Babies with TOF need heart surgery and lifelong medical care.
In this condition, the veins that take blood from the lungs to the heart don’t connect to the heart the right way. It causes blood to circle back and forth between the heart and lungs. But blood never flows out to the rest of the body like it should. A baby with this condition needs surgery as soon as possible. Without treatment, the heart can get bigger, leading to heart failure. Heart failure is when the heart can’t pump enough blood.
Babies with this condition have the positions of two important arteries switched. This means the blood that’s pumped to the body may not have enough oxygen. Babies with TGA need heart surgery and lifelong medical care.
In this condition, the heart’s tricuspid valve is missing or doesn’t develop normally. If this valve doesn’t open, enough blood can’t flow into the lungs to pick up the oxygen it needs. Babies with TA need surgery.
Babies with this condition have only one artery that leaves the heart instead of two. This causes blood with oxygen to mix with blood that doesn’t have oxygen. Babies with this condition need surgery because over time, they can develop a life-threatening problem called pulmonary hypertension. This is high blood pressure in the arteries to the lungs.
Other common congenital heart defects include:
Septal defects, like Atrial Septal Defect (also called ASD) and Ventricular Septal Defect (also called VSD)
These defects leave a hole in the septum, which is the wall that separates the right and left atria and right and left ventricles. The atria are parts of the heart that receive blood coming from other parts of the body. Ventricles parts of the heart that pump blood out to other parts of the body. A hole in the septum can cause blood to go in the wrong direction or to the wrong place, results in mixing of oxygenated blood with deoxygenated blood. About half of all ASDs close on their own. Heart surgery and procedures with catheters (thin, flexible tubes) can fix medium and large ASDs. Heart surgery may be needed to fix VSDs.
Coarctation of the Aorta (COA)
In this condition, part of the aorta is narrow. The aorta is the large artery that carries blood from the heart to rest of the body. Having COA means the heart has to work harder to get blood through the aorta. COA is treated with balloon angioplasty. In this procedure, a provider uses a catheter with a tiny balloon to push open the aortic valve. Or he may treat it with a stent, which is a small mesh tube used to treat narrow or weak arteries. Babies with more severe COA need heart surgery.
Heart valve abnormalities
These happen when heart valves don’t close the right way or valves are narrow or blocked, so blood can’t flow smoothly. Mild heart valve abnormalities don’t need treatment. Procedures with catheters can treat many severe heart valve defects. Some may need surgery.
Heart defects develop in the early weeks of pregnancy when the heart is forming, often before you know you’re pregnant. The scientific world is not quite sure what causes most congenital heart defects, but following things may play a role:'
Some babies have heart defects because of changes in their chromosomes or genes. Chromosomes are the structures that hold genes. Genes are part of your body’s cells that store instructions for the way your body grows and works. Genes are passed from parents to children. Researchers have found about 40 gene changes (also called mutations) that cause heart defects. About 30 in 100 babies (30 percent) with a heart defect also have a chromosomal condition or a genetic condition.
If you, your partner or one of your other children has a congenital heart defect, your baby may be more likely to have one, too. So you may want to meet with a genetic counselor. This is a person who is trained to help you understand how genes, birth defects and other medical conditions run in families, and how they can affect your health and your baby's health.
Some things in your life and environment (where and how you live) may increase your chances of having a baby with congenital heart defects. These include:
Severe congenital heart defects usually are diagnosed during pregnancy or soon after birth. Less severe heart defects often aren’t diagnosed until children are older.
During pregnancy
Your provider may use a test called fetal echo to check your baby’s heart. This test makes a picture of your baby’s heart while still in the uterus (womb). You can have this test as early as 18 to 22 weeks of pregnancy.
You may need a fetal echo if:
Your baby may be tested for CCHD as part of newborn screening before he leaves the hospital after birth. Newborn screening checks for serious but rare conditions at birth. It includes blood, hearing and heart screening. All states require newborn screening, but they don’t all require screening for CCHD. Ask your provider if your state tests for CCHD.
Babies are screened for CCHD with a test called pulse oximetry (also called pulse ox). This test checks the amount of oxygen in your baby’s blood using a sensor attached to his finger or foot.
After birth, signs and symptoms of heart defects can include:
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