Congenital Heart Defects
Congenital heart defects raise numerous questions for those affected and their relatives that affect all areas of life. We have summarised the most important questions and answers for you.
Congenital heart defects are the most common birth defects: every year, one in every 100 children in Switzerland is born with a heart defect. Parents and those affected are therefore confronted with many questions and problems.
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Affected newborns have a disorder in embryonic heart development and the child is born with a valve defect, a "hole in the heart" or vascular malformations. Often there is also a combination of different heart defects. Some uncomplicated heart defects outgrow over time, while serious ones require several operations and/or catheter interventions on the heart, sometimes shortly after birth or in childhood and adolescence. Only very few, very complex heart defects cannot be operated on.
The types of treatment are very different and individually tailored. In addition to operations, minimally invasive catheter procedures are sometimes also possible.
Certain heart defects are virtually cured after one procedure, others require repeated procedures and have to take medication regularly. Scars on the heart, foreign material, valve prostheses or cardiac pacemakers require lifelong follow-up care. Interventions are often necessary again in adulthood due to narrowed vessels, leaky or calcified valves or arrhythmias. Drug therapy may be necessary because of arrhythmias or heart failure
According to the European Society of Pediatric Cardiology (AEPC), a distinction is made between 2,000 different types of congenital heart defects . In some cases, the defect goes unnoticed at birth and is only discovered later in life. In others, the symptoms are so severe that the defect can even be detected before birth or in the first few days of life. A serious heart defect is usually discovered early. Further examinations in specialized centers are then necessary. After extensive consultations and explanations to the parents, the next steps are determined.
Overview and description of heart defects:
The health impairment caused by a congenital heart defect varies depending on the form and severity, but the prospects for recovery are often good. The types of treatment also vary greatly and can sometimes be very complex. It is important that each person receives treatment that is tailored to their individual needs. It is therefore very important to inform the child and their parents or the adult about the specific disease and the resulting treatment options.
The disease is only partly hereditary. Boys are affected slightly more often than girls and heart defects can occur more frequently in some families. It is still not fully understood why children are born with heart defects. Some children with congenital heart defects have another disease at birth or the heart defect occurs as part of a syndrome (eg trisomy 21).
There are numerous symptoms that could indicate a congenital heart defect. It is best to discuss this with your pediatrician if this occurs in your child.
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Due to the lack of oxygen, lips, skin and nail beds can turn blue (cyanosis). Other symptoms can include listlessness, difficulty drinking and thriving, and pale, clammy skin. Tiredness, difficult or rapid breathing, palpitations and swelling of the feet, ankles and abdomen can also occur with a congenital heart defect.
Diagnostic and treatment options have expanded massively over the years - today around 90% of children with congenital heart defects reach adulthood. Even children with severe disabilities who would have had little chance of survival just a few decades ago can now hope for a largely "normal" life with few restrictions.
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The human psyche plays an important role in this disease: how do those affected and their relatives deal with the disease and how do they manage their lives.
There are many different types of heart defects. Some occur individually and others consist of multiple heart defects.
The New Media Center at the University of Basel created a large number of images of congenital heart defects and the associated heart operations.
Do you need to have an examination soon, such as a stress ECG? Or would you like to show your child how such an examination is carried out?
You can have these examinations carried out by your doctor or one of the heart centers. Here you can see some video examples of common examinations related to congenital heart defects. This way you and your child can get an idea of what they are like in advance.
Helpful Websites
You can find a variety of publications on the following websites:
​The diagnosis of a heart defect impacts the development of affected families. Therefore, parents founded the Parents’ Association in 1989. We support affected parents, organize events, and promote exchange
The Fontanherzen Schweiz association supports and accompanies families whose children live with half a heart, provides information and facilitates dialogue between affected families and specialists.
The Association for Adolescents and Adults with Congenital Heart Defects is interested in more than just your heart defect.
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We promote dialogue between families with children with heart disease in French-speaking Switzerland through meetings and self-help groups. We organise sports and leisure activities and support projects to improve their everyday lives.
Each year, 700–800 children are born with a congenital heart defect, over 90% of whom reach adulthood. Nursing plays an increasingly important role. Therefore, the "Interest Group Nursing for Congenital Heart Defects" was founded on January 13, 2016.
WATCH, the Swiss working group of cardiologists for teenagers and adults with congenital heart defects, advocates for appropriate cardiac care for this growing patient group. Thanks to specialized procedures in pediatric cardiology centers, most affected children reach adulthood.
Canadian Congenital Heart Association: A Canadian organization for congenital heart defects.
Global ARCH: Strengthens patient and family organizations worldwide, supporting children with congenital and rheumatic heart diseases through education, mentoring, and advocacy to improve their quality of life and outcomes.