Congenital Heart Disease
What is congenital heart disease?
Diagnosis
Tests
Treatment
Causes
Will my child develop in the same way as other children?
Can my child be immunised like other children?
If I have another child are they likely to have congenital heart disease too?
Endocarditis
Types of Congenital Heart Disease
What is congenital heart disease?
Congenital means
'born with'. Congenital heart disease is an abnormality of the structure of a baby's heart, the valves and/or the vessels around it.
The structure of a baby's heart develops early (6-12 weeks of pregnancy), often before a mother may even realise that she is pregnant . A mistake at this early stage in the development of the baby's heart can cause congenital heart disease.
8 in every 1000 babies born alive have some form of congenital heart disease.Not all heart defects seriously affect the way the heart works. 1 in every 2 babies born with a heart defect do not need treatment for it.
How is congenital heart disease diagnosed?
Many babies heart defects are diagnosed on an ultrasound scan during pregnancy. If congenital heart disease is suspected you may be offered a specialist fetal echocardiogram so your baby's heart can be seen in more detail.
Sometimes, heart problems are diagnosed after a baby is born, or may not be found for many years, even up to adulthood.
If your baby is showing any of the following signs she/he should be examined carefully for heart problems:
· If your baby's skin looks blue, especially around their lips
· Fast breathing: if your baby is breathing faster than normal
· Poor feeding
· Poor weight gain
These symptoms may be the result of the heart trying to work harder, which means the baby needs to breathe faster. He/she will find it too tiring to breathe and feed at the same time, leading to poor weight gain.
How do doctors test for congenital heart disease?
Your doctor will carefully examine your child. If congenital heart disease is suspected you will see a Paediatric Cardiologist (a doctor who is a specialist in heart disease in children).
If the Cardiologist suspects a congenital heart defect they will arrange for some tests. These may include:
· ECG: which will record the way the heart is working
· A 24 hour ECG which will monitor the heart's activity for a whole day and night.
· Echocardiogram (cardiac ultrasound) which will show the way the heart is made
· MRI scan to show detailed structure of the heart
· Cardiac catheterisation to show more information about the way the heart is working
How is congenital heart disease treated?
Some babies have one problem with the way their heart works, others have several. Thanks to heart research most babies born with congenital heart disease in New Zealand now survive. Sadly, there are some children whose condition is so serious and complicated, that they are unable to survive.
Treatment for congenital heart disease depends on which type of defect is diagnosed and how severe it is. It is normally treated in one or more of the following ways:
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Medication: medicines to help the body to manage the workload of the heart.
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Surgery: operations aim to repair the structure of the heart to enable it to work as well as possible. Some children need one operation; others need several over months or years. It will be done at the age which will give the best possible result for him/her.
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Cardiac catheterisation: Some holes in the heart can be closed using small inflatable balloons are placed at the end of a tube which is inserted into the heart and used to open narrow blood vessels or valves.
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Ablation: Some abnormal heart rhythms can be corrected by inserting a tube into a part of the heart which delivers either radiofrequency energy (RF ablation) or intense cold (cryoablation) to destroy the small section of tissue which is causing the problem.
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Heart transplant: may occasionally be considered for very serious conditions where there is no other treatment option.
What causes congenital heart disease?
There is usually no known cause for congenital heart disease. However, some congenital heart conditions may be caused by a mother smoking, drinking excessive alcohol, having poorly controlled diabetes or taking drugs during pregnancy. Some heart defects run in families
Will my child develop in the same way as other children?
Babies with heart disease may be slower to sit up and walk but they learn just as well other children. Even if your child looks blue, the development of their brain is most likely to be normal.
Can my child be immunised like other children?
It is very important that your child is immunised in the normal way at the usual times and this should only be postponed if the child is ill.
If I have another child, are they likely to have congenital heart disease too?
If you and your partner have together had one child with congenital heart disease, you will have an increased risk of your future children being affected by congenital heart disease too.
How big or small that risk is will depend on your family history and the type of congenital heart defect which your child has. If you would like to find out more about your situation, please talk your cardiologist or ask to be referred to a geneticist (a doctor who specializes in how genetic faults run through families).
If you become pregnant again, you may have an echocardiogram on your unborn baby's heart when you are between 14 and 18 weeks pregnant which will examine your baby's heart in detail.
Endocarditis
Some children with heart defects develop a serious infection inside the heart called endocarditis. For more information please click here.
Types of Congenital Heart Disease
The following is a brief description of some of the many congenital heart defects. It is not intended to cover all aspects of all defects. Click here to link to other websites for more information about congenital heart disease.
Heart Murmur
Hole in the heart (ASD / VSD).
Valve defects (aortic stenosis. pulmonary stenosis. pulmonary atresia. tricuspid atresia)
Transposition of the Great Arteries
An innocent heart murmur is a noise which occurs in a perfectly normal heart. Heart murmurs can be heard in about 3 out of 4 children and usually disappear as the child gets older.
Innocent murmurs can be known as:
- Vibratory murmurs
- Venous hums
- Functional murmurs
All of these terms refer to innocent murmurs and do not need any medical attention.
Hole in the Heart (Atrial Septal Defect/ Ventricular Septal Defect)
ASDs and VSDs may occur alone or as part of more complicated congenital heart defects. Most will close naturally without the need for treatment.
· Atrial Septal Defect (ASD): is a hole in the muscle wall between the atrium. ASDs may be small and close on their own as your baby grows. Some ASDs need an operation to close them before the heart is damaged by the strain of coping with the defect.
- Ventricular Septal Defect (VSD): is a hole in the muscle wall between the ventricles. VSDs may be small and close on their own as your baby grows. Some VSDs need an operation to close them before the heart is damaged by the strain of coping with the defect.
Valve Defects
Heart valves open and close to allow the blood to flow correctly between the different parts of the heart. They can be:
· Too narrow or closed: (aortic stenosis, pulmonary stenosis) a narrow (stenosed) valve will need to be widened to allow adequate blood flow. This operation may need to be to be repeated over several years. A new valve may be needed.
· Missing: (pulmonary atresia, tricuspid atresia) will need more than one operation to help the blood flow efficiently.
· Wrongly positioned: and may need an operation, depending on whether or not it causes a problem for the heart.
Coarctation of the Aorta
The aorta is the main vessel taking blood from the heart to the body. Coarctation means there is part of the aorta which is too narrow. (The word 'coarctation' comes from the Latin 'coartare' meaning 'to press together')
Often there are no symptoms of this at birth, but by just one week of age the baby may show signs of heart failure and need surgery. If there are no symptoms, surgery can be done later, possibly by angioplasty.
Transposition of the Great Arteries
The major blood vessels leaving the heart to take blood to the body and to the lungs (the aorta and the pulmonary artery) are switched around (transposed). These arteries have to be 'switched' back to the right place by an operation soon after birth. This operation is sometimes referred to as 'a switch'.
Fallot's Tetralogy
In this condition there are four different things wrong with the heart. These are:
- Pulmonary stenosis
- Ventricular septal defect
- The aorta allows some deoxygenated (blue) less efficient blood to go round the body.
- The right ventricular muscle gets thickened as it has to work harder trying to push blood through the narrowed pulmonary valve.
The baby will need at least two operations. He/she will also need medication.
Patent Ductus Arteriosus
There is an area in the heart called the ductus arteriosus. In all babies it is open before birth and closes by the time the baby is two weeks old.
In some babies it remains open and allows blood to flow from the aorta (the main artery going around the body) to the lungs. The lungs receive extra blood and the heart has to do extra work. Usually it does not cause any symptoms, but if it is large babies may be breathless and feed poorly. Older children may tire more easily than their friends.
Patent ductus arteriosus is diagnosed by echocardiography, and is usually closed using a catheter which is passed into the heart. Occasionally an operation needed to close it.
Hypoplastic Left Heart Syndrome
The left side of the heart and the aorta are too small.
All babies are born with an opening into the aorta (ductus arteriosis) which closes naturally within two weeks. A baby with hypoplastic left heart may appear normal at birth but collapses after a few days because when this duct closes he/she cannot survive.
There is no cure for hypoplastic left heart syndrome but there are three staged operations which may help the baby to live for longer. The only other option is heart transplant but there are very few suitable donor hearts for very young children.
Truncus Arteriosis
Instead of being two different blood vessels, the aorta and pulmonary artery arise from the heart as one then divide. Too much blood goes to the lungs and the child is short of breath, feeds poorly and does not gain enough weight.
This is usually diagnosed by chest x-ray, echocardiogram and ECG. A large operation is needed within a few months of life plus possible further operations later in childhood.
Cardiomyopathy
The heart muscle and ventricles may be thickened (hypertrophic, meaning overgrown) or enlarged and relatively thinner (dilated). If a valve is involved, then blood flow through and from the heart may be affected and the heart may beat abnormally.
The cause is often unknown but sometimes runs in families. Symptoms are usually helped by taking medication. Click here for more information on cardiomyopathy.
If you would like more information on any specific congenital heart condition, we recommend the following websites:
http://www.pted.org/
http://www.bhf.org.uk/living_with_heart_conditions/understanding_your_condition/types_of_heart_conditions/congenital_heart_disease.aspx
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www.childrens-heart-fed.org.uk
http://www.heartchildren.org.nz - This organisation have some useful booklets on types of congenital heart disease which they will send to you.
