Frequently asked questions
1. When and how should a prophylaxis against endocarditis be performed?
Nearly all kinds of heart defects lead to an increased risk for infection of the heart itself or the cardiac valves. This is called "endocarditis". All cardiac chambers and the valves are covered with a special layer of skin ("endocard") to ensure undisturbed blood flow. Whenever this layer is disrupted there is an increased risk that bacteria which travel in the blood stream can hold on to these regions where they start to grow. While they grow, they start to destroy cardiac tissue and cardiac valves, so it is a life-threatening infection. Holes in the heart, stenotic or leaking cardiac valves or scares after cardiac surgery may cause defects in the endocard due to turbulent, high velocity blood flow. The patient feels sick, is pale and febrile. Therapy is long lasting and consists of a combination of antibiotics, administered intravenously over weeks or even months. Sometimes only immediate cardiac surgery is life saving.
Therefore prophylactic antibiotic therapy in patients with most forms of congenital heart disease is mandatory.
When and how this prophylaxis should be performed is indicated in the "Herzpass" which you got from your cardiologist. Especially be aware of all surgical procedures in the mouth.
2. Are there any problems with vaccinations and heart defects?
Children with congenital heart defects in general should get the same vaccinations as all other children. Especially children with critical heart disease and impaired ventricular function should have the best protection against infections. So we additionally recommend a vaccination against the flu in children with cyanotic heart disease or impaired cardiac function. As in all other children, heart patients should not suffer from febrile infection at the time of vaccination. We do not recommend vaccinations 4 weeks before or after cardiac surgery.
3. Is there a need for blood transfusion at cardiac surgery? Is it possible to use own blood?
Whenever a cardiac operation is performed there is a probability that blood must be given. Small children who have to go on cardiac bypass must get additional blood to fill all the space in the extracorporal circulation. Larger children or patients with operations without bypass usually don’t need extra blood.
All the blood that is used in our institution is derived from a special pool of donors, who are well known to our blood bank. Certainly the donor blood undergoes all necessary tests for infectious material and a special procedure to inactivate undetected viruses. Then the best-suited blood is selected for transfusion.
In the case of a planned scheduled operation there is the possibility of first donating own blood, that can be used at the time of surgery. Advantages and disadvantages for each individual patient must be discussed at the time of scheduling.
We currently don’t recommend transfusion from relatives or parents because of the risks of sensibilisation.
4. What about sports if there is a heart defect?
In cases of an insignificant heart defect like small holes in the septum or only mild stenotic or insufficient valves there are no restrictions to perform sports in the usual way.
Many children with significant heart disease, who have been successfully repaired don’t have any restrictions.
Care must be taken when severe stenoses or regurgitations are present. These children usually are asymptomatic for a long time but carry a high risk of a sudden cardiac death during exercise (which can be the "first symptom")
Therefore the question of sports or no sport must be discussed with your caring cardiologist.
5. What about air travel with children, who have heart disease?
Air travel must always be discussed with your physician first. In most cases there will be no objection. However children with decreased oxygen saturations may carry an increased risk in airplanes due to the lower oxygen content in the flight cabin.
6. Where do heart defects come from?
The development of the heart occurs very early in pregnancy when most mothers do not even know that they are pregnant. After about 10 weeks the heart is completely formed and from there on only increases in size. Some defects are inherited, some are part of a general disorder like Down’s Syndrome, infections (e.g.rubella), drug intake, maternal disease (Diabetes) or ionized radiation. However in most cases (appr. 80%) we don’t know the reason yet.
7. I (we) already have a child with congenital heart defect. Is there an increased risk to get another child with heart disease?
Once you had one child with congenital heart defect the risk for another child rises from about 1% to 2-5% percent and thus is still low. A fetal echo cardiography performed at 18 – 20 weeks can rule out significant heart disease. Earlier in pregnancy there is the possibility to examine the genetic material of fetal cells (chorion villi sampling). Genetic testing may give further information whether there is an increased risk in future pregnancies.
8.How can I help children with heart disease?
We do have an account where money for these children is collected. This money is used for medical equipment toys and other items that can make a hospital stay of children with heart defects or their parents more comfortable and safer.
How can I help children with heart disease?
For donations:
Spendenkonto für herzkranke Kinder
Kt.Nr. 711-0425/98 bei der Oberbank (BLZ 15000)
