Frequently Asked Questions on Congenital Heart Defects
Will the child with a heart defect be healthy in the future and be able to lead a normal life?
Most children with heart disease have minor conditions which only require occasional hospital visits and can lead a normal life with no restriction in activity. Children with complex heart disease are more variable. Conditions that have been fully corrected at the right time usually result in restoration of normal circulation and normalization of heart structure and size over a period of time. These children can usually lead a normal life with no restrictions in activity or lifestyle.
Some children have defects that cannot be fully corrected or that require multiple operations. In these children there is a possibility of residual lesions (defects) that need future intervention/surgery. These children need close lifelong follow up and possible lifelong medical therapy.
Will the child with a heart defect be able to go to a regular school and play sports like other children?
Children with heart defects (with or without surgery) can usually go to a regular school and participate in playtime and sporting activities. Even children with complex heart defects are encouraged to participate in some form of physical activity depending on their own exercise capacity.
Children with minor heart defects can have a completely normal life
with no activity restriction. In fact many of them can actually participate in high intensity competitive sports. Those with more complex heart problems can usually take part in leisure sports like running, swimming, cycling etc. but are usually advised to avoid muscle building exercises like weight lifting which might increase the strain on the heart. The level of activity that is ideal for each child is individualised and your treating physician should be able to give you specific advice that is tailored for your child.
Some children may have genetic problems associated with the heart defect and this may affect their ability to attend mainstream school. These children may have learning difficulties and may require additional support at school or need to attend special school.
We would usually advise 3-4 weeks off school after heart surgery and 3-4 days after keyhole therapies. During the first 3 months after heart surgery the child should avoid sporting activities to allow complete healing of the breast bone.
What are the main symptoms of a child with a heart defect?
Heart defects can present with various symptoms at various ages in children. Severe defects may be obvious right from birth or within a few days of birth. They usually present with bluish discoloration of the skin (cyanosis) or paleness (pallor), poor circulation and breathlessness. If you find these features make sure you take the child to the hospital IMMEDIATELY!
Less severe conditions may be detected later in life and may present with breathlessness and feeding difficulties. Babies with heart defects cannot feed for very long so they take small feeds frequently and are constantly hungry. Poor weight gain is commonly seen in these children. They can also become very sweaty during feedings or when crying.
Children with heart problems are also more prone to getting chest infections or pneumonia which may sometimes need admission to hospital. Sometimes a heart defect is picked up as an incidental finding of a murmur (unusual noise from the heart) by the family doctor.
Older children can present with chest discomfort/pain and palpitations (awareness of abnormal heart beating). Chest pain in children is usually not related to the heart but a careful examination and assessment should be performed before reassuring the family. Palpitations may be the sign of electrical disturbances in the heart and these can be easily treated nowadays.
Will the child be able to get married and get pregnant in the future? Will the child who is born to a person with a heart defect also have heart disease?
Most children with heart defects can look forward to a normal life and grow up to be productive members of society. They can go to school, attend college, take up a job, get married and have children. There are however some specific circumstances (e.g. severe pulmonary hypertension) where the risks to the patient are too high to safely allow for pregnancy. This situation is rare and occurs only in a small proportion of patients with heart defects. In this circumstance adoption may be an option.
All patients with heart defects (even post surgery) should plan their pregnancy carefully in consultation with their physician. They should take folic acid supplements prior to conception and should have a fetal echocardiogram done in early pregnancy.
The risk of recurrence of CHD is an important concern for families and it is important to know that overall there is only a small increase in the risk of the baby also having a heart defect. There is a 95% chance of having a child with a normal heart. Fetal echocardiography can be carried out electively in early pregnancy to rule out heart defects in these pregnancies.
Will the child feel pain after the surgery?
The breastbone in the chest area usually takes about 3 months to heal completely after heart surgery. However, pain is commonly present only for a week or two after surgery. Children are often up on their feet within a couple of weeks after surgery although we advise avoiding strenuous activities and contact sports for the first 3 months. Painkillers are usually prescribed for the first week after discharge from hospital to be given regularly for the first few days and then used as needed.
What food can the child eat? Are there any dietary specifications?
Usually there are no major dietary restrictions in children with congenital heart disease. In babies who are struggling to put on weight, calorie supplements or high calorie foods may be recommended. Also children suffering from heart failure symptoms may be advised to limit their fluid intake and reduce salt in their diet. In some children who develop fatty fluid collection after surgery (chylothorax) special low fat diets may be advised. In the majority of children with heart defects a balanced, nutritious diet is all that is required. Kindly follow the specific dietary advice tailored for your child by their doctor.
Are there any signs that we should watch out for as the child grows up?
Most children with significant heart defects will be under regular follow up and your caring physician will be able to give you specific advice in this regard. As a general rule, worsening of cyanosis (bluish discoloration), breathlessness, loss of appetite, loss of weight, persistent fever, complaints of palpitation or chest pain, dizziness and blackouts should prompt a visit to the hospital for further assessment. It is important to keep up with regular appointments so that any problems can be picked up and treated early.
What are the tests done antenatally (during pregnancy) to detect heart disease in children?
Certain mothers can be at a higher risk of having babies with birth defects of the heart, such as:
· Diabetic mothers
· Family history of previous child with heart defect or if parent has a heart defect
· Detection of other abnormalities in the baby e.g. spine, kidney or genetic problems
· Exposure of the mother to rubella infection (fever & rash) during pregnancy
· Mothers who have undergone IVF treatment
These mothers should have an early anomaly scan followed by a specialized scan of the heart of the unborn baby. This scan is called a fetal echo-cardiogram and can be performed at 16-18 weeks of pregnancy. Here, the baby’s heart is examined in detail to look for any abnormalities. When performed by skilled and trained professionals this scan will pick up most of the major cardiac abnormalities.
Although the majority of heart defects are now easily treatable, very complex heart defects may be more difficult to treat. So, deciding what to do if a heart defect is picked up in a pregnant woman depends on what the defect is, whether treatment is available and of course, what the parents and family want to do. The doctors involved in the care of the pregnant woman will need to discuss with the family the options that are available to manage their pregnancy.
Is there a hereditary link to develop heart disease?
Birth defects of the heart occur in approximately 8 out of 1000 live births i.e. roughly 1% of all babies born alive. It is one of the most common birth defects. The majority of times there is no explanation as to why a patient has developed a certain heart defect. Only 10% of patients with heart defects will have some identifiable genetic problem. Of course there are still thousands of genetic problems that we are yet to discover. Conversely, if a baby has a genetic problem identified (e.g. Downs Syndrome) there is roughly a 30% chance that the baby will have a heart defect. Also some defects may run in families and therefore screening of family members may be required in these conditions.
Fetal Echocardiogram being done