Health issues
What is a congenital heart disease?
Congenital heart disease is a malformation of the heart or great vessels that is present from birth. These defects develop during pregnancy. They vary greatly in form, some being slight and passing unnoticed and others requiring medical or surgical treatment from the first days of life. Today, thanks to medical progress, most children with congenital heart disease grow and mature into adults. As a result, congenital heart disease has been transformed into a condition that, for some people, requires lifelong monitoring. Types of congenital heart diseaseMain types of congenital heart diseaseA distinction can be made between different categories of heart defects at birth:1. “Abnormal holes and communications in the heart”These are abnormal openings or communications between the heart chambers that should not be present Atrial septal defect (ASD): a small hole between the two atria (upper chambers).Ventricular septal defect (VSD): hole between the two ventricles (lower chambers).Atrioventricular septal defect (AVSD) : a more extensive defect that affects the atria, ventricles and valves. Patent ductus arteriosus (PDA) : a small tube that normally connects the heart and lungs during pregnancy fails to close after birth.Anomalous pulmonary venous connection: the veins that transport oxygenated blood from the lungs are not connected correctly.2. Valve defects and “shrinkages”The heart valves function as “doors” that regulate the flow of blood. These can have malformations. In the case of a stenosis the blood flows with difficulty because a valve or vein is too narrow. Ebstein’s anomaly : the tricuspid valve (between the right atrium and ventricle) is displaced or functions badly.Valvular dysplasia: a valve is malformed and does not close properly.Pulmonary stenosis : a narrowing of the output to the lungs.Aortic stenosis: narrowing of the exit to the aorta (the great artery that brings blood to the body).Coarctation of the aorta: a section of the aorta is too narrow.3. Malformations that result in poor oxygenation (cyanosis)As a result of these malformations the blood is insufficiently oxygenated, which can result in bluish lips.Tetralogy of Fallot : a combination of 4 abnormalities that interfere with the circulation.Transposition of the great vessels (TGV or TGA): the two great arteries are “inverted”, which causes the blood to flow to the wrong place. Common arterial trunk: rather than having two exits (one for the lungs, one for the body) there is just one artery that exits the heart.Pulmonary atresia : the valve that allows the blood to flow to the lungs is absent or under-developed.4. Malformations with a single functioning ventricle:Triscupid atresia: the triscupid valve and right ventricle are too small.Hyposplastic left heart syndrome: part of the left side of the heart is too small and does not function properly.Single ventricle: the heart functions with just one main chamber rather than two.Remember:Some heart disease is simple and benign (such as a small hole that closes by itself). In other cases it is more complex and surgery is needed in the first days of life.Depending on the situation, monitoring may be necessary beyond the paediatric period and into adulthood. The good news is that thanks to medical progress most children with congenital heart disease grow up to become adults leading an active life.
What are the symptoms of a congenital heart disease?
Symptoms vary depending on type and severity:Shortness of breath, especially when eating or during exercise;Unusual tiredness;Weight gain or growth retardation in children;Bluish tinge to the lips, skin and nails (cyanosis); Frequent respiratory infections;Palpitations or irregular heart beat.Some malformations remain silent and are only discovered during a medical examination. Prevalence in BelgiumApproximately 8 in 1,000 births or close to 800 new cases a year.Today more than 90 % of affected children survive into adulthood thanks to medical and surgical progress.It is estimated that more than 50,000 adults in Belgium are living with congenital heart disease, making it a major public health issue.
How are congenital heart diseases treated?
Care at the Brussels University Hospital1. Paediatric medicinePrenatal diagnosis: some abnormalities are detected before birth thanks to foetal ultrasounds. At birth and during childhood : children are monitored by specialised paediatric cardiologists.Care can include:Medical treatment to assist the heart or correct an irregular heartbeat;Heart surgery (sometimes in the first days of life) ;Catheter interventions (placing of stents, closure of cardiac communications, dilatations, etc.) ;Development monitoring (growth, diet, schooling, physical activity).PhysiotherapyPsychological and social support2. Transition to adult medical careIn adolescence, a process of transition is put into place.Objectives:To prepare the young person to manage their illness and treatment ;To help them understand their medical history and the importance of long-term monitoring of their condition;To organise the progressive move from paediatric monitoring to an adult team specialised in congenital heart disease.This stage is crucial to avoid any interruption in the monitoring, which is frequent in adolescence, and to reduce complications in adulthood. 3. Adult medical careAdults with congenital heart disease require regular monitoring with check-ups at specialised centres (often known as GUCH – Grown-Up Congenital Heart disease clinics). The care includes:Lifelong monitoring: echocardiograms, cardiac MRI, electrocardiograms, regular check-ups;Adapted treatment: medicine, surgery or catheter interventions if necessary; management of heartbeat conditionsPrevention of complications : heartbeat problems, cardiac insufficiency, pulmonary hypertension, infectious endocarditis;Genetic counselling and assessment of risk of recurrence for future generationsMonitoring and evaluation of complications for pulmonary circulationEveryday life: advice regarding sport, work, travel, contraception and pregnancy;Psychological and social support : support for living with a chronic disease.The H.U.B provides comprehensive care and a full range of treatment drawing on its expertise in heart failure and transplants, evaluating pulmonary circulation, cardiogenetics, rhythmology, interventional cardiology and heart surgery. This range of treatment makes the HUB a Belgian reference centre for congenital heart disease.
Your specialists
At the Erasme HospitalProf. Antoine BondueCardiogenetics and adult congenital heart diseaseHead of the H.U.B. Department of CardiologyDr. Marielle MorissensCardiologist Adult Congenital Heart DiseaseProf. Jean-Luc Vachiery Pulmonary circulation and heart failureHead of Clinic Prof. Ana RoussoulièresHeart failure and transplantsDr. Renaud DendievelInterventional CardiologyPrendre rendez-vous Tél.: +32 (0)2 555 39 60 email : Cons [dot] Cardio [dot] erasme [at] hubruxelles [dot] be (Cons[dot]Cardio[dot]erasme[at]hubruxelles[dot]be) À l’HUDERF Prof. Françoise VermeulenIntegrated Paediatrics and Adolescent MedicineDr Nicolas Arribard Paediatric cardiologistHead of the Department of Paediatrics Dr Hugues Dessy Pediatric cardiologistSpecialized in prenatal diagnosisHead of the Pediatric Cardiology Department at HUDERFProf. Pierre WauthyCongenital heart surgery To make an appointmentTel.: +32 (0)2 477 31 79 email : Call2 [dot] Accueil [dot] huderf [at] hubruxelles [dot] be (Call2[dot]Accueil[dot]huderf[at]hubruxelles[dot]be) Discover the HUDERF Department of Paediatric Cardiology
FAQ about congenital heart disease
1. Is congenital heart disease always serious?
No. It can be benign and require no more than light and sometimes temporary monitoring during childhood. In other cases long-term monitoring is essential and perhaps surgery.
2. Can congenital heart disease be prevented?
In most cases not as it often depends on complex factors. There are nevertheless situations in which hereditary plays a major role. Good preparation for the pregnancy and early identification of any hereditary factor reduces certain risks (genetic counselling, administration of folic acid, regular medical monitoring, no alcohol or smoking).
3. Is congenital heart disease hereditary?
Not always but in some cases yes. In the majority of cases congenital heart disease is an isolated case, occurring without any known family history. It results from a complex combination of factors: environmental during the pregnancy (for example: viral infections such as rubella, the taking of certain medicine, alcohol consumption, poorly managed diabetes); and sometimes genetic factors (chromosomal or gene abnormalities or genetic variants that appear in the child or are inherited from the parents). At present a genetic element is identifiable in around 30% of cases, with a varying implication or severity depending on the situation: transmission of the responsible genetic traits in the family (several members of the same family affected but often to a variable degree)); genetic syndromes (e.g.: Down’s syndrome, DiGeorge syndrome, Noonan syndrome, etc.).
4. If my child is born with congenital heart disease what is the risk that my future children will also be born with heart disease?
If a child is born with congenital heart disease the risk of a brother or sister being born with the same condition is higher than for the general population (often between 2% and 6% but it can be higher depending on the type of malformation and family history). This risk justifies genetic counselling depending on the situation and sometimes specific monitoring during subsequent pregnancies (targeted foetal ultrasound or preimplantation ultrasound).
5. If a parent (father or mother) has congenital heart disease is there a risk for the children?
Yes, the risk is slightly higher than for the general population. Depending on the type of malformation this is between 2% and 10%. The risk is generally a little higher if it is the mother with congenital heart disease. This risk justifies a foetal heart ultrasound during the pregnancy for early screening for any malformation. In some cases genetic counselling will be proposed prior to pregnancy.
6. Can children with congenital heart disease live a normal life?
In most cases, yes. They will go to school, play, and grow but must follow the medical recommendations and have regular check-ups. In some cases there will be a need for adapted or specialised education.
7. Can congenital heart disease be cured?
A congenital heart disease is almost never “completely cured” once and for all. Even after successful surgery, complications or reinterventions can occur in adulthood. This is why a proper transition from pediatric to adult care is essential for continuity of follow-up.
8. Can a woman with congenital heart disease get pregnant?
In many cases, yes. But with specialised monitoring. Some situations require increased monitoring and in rare cases a woman may be advised against pregnancy.
Useful links / Resources
Belgian Heart League
Belgian Society of Cardiology – Belgian working group on adult congenital heart…
European Society of Cardiology – Congenital Heart Disease section
PRESS RELEASR - Congenital heart disease: continuity of care, from childhood to…
