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Updated Patient Information

Coronavirus: How Can I Protect Myself as a Heart Patient?

Useful information on how to deal with Covid-19/SARS-CoV-2

Important Notice: This patient information was updated on May 25, 2020.

The lockdown measures for reducing the spread of the novel coronavirus seem to have worked. On our way to a “new normal”, the initial easing measures have been taken; a further easing is foreseeable. However, there is no reason to give the all-clear signal. A new increase in the number of infections has to be anticipated at any moment.

It is obvious and understandable that many parents of children with congenital heart disease, as well as adults and adolescents with congenital heart disease, are concerned especially in this transition phase leading to a cautious resumption of everyday life. What does not help here is information shared in a medically incorrect way, as well as misleading misinformation, which both are abundant especially in social media. Here is what experts have to say:

Yes to caution, but no to unfounded worry or panic. This recommendation is still valid.

The pandemic with the new virus called Covid-19/SARS-CoV-2 has changed our everyday life and has had an immense impact on all areas of society. The main priority now remains to be preventing the rapid spread of the virus in order to ensure ideal medical care, particularly of severely ill patients. Please do continue to adhere to the current instructions and regulations of the federal authorities and federal state authorities in charge. Please stick to keeping the minimum distance of 1.5 meters and to observing the sanitary regulations in connection with all outdoor activities. You can find out more information in the section “What You Need to Know Now” below in this recommendation.

What We Know Now

The coronavirus is spread from person to person. The incubation period is estimated to be 14 days. The virus can also be transmitted by people who are showing only little or no symptoms at all. The virus is transmitted especially through respiratory secretions. The infection mostly causes similar symptoms as a mild cold or an influenzal infection. The symptoms identified as of now include, among others, cough, temperature, shivers, headache or limb pain, a sore throat, a runny nose and the loss of the sense of taste or smell. The novel strain Covid-19/SARS-CoV-2 belongs to a group of viruses that can cause severe infections of the airways, such as pneumonia. According to most recent findings, however, the virus can also affect other organs such as the heart or kidneys and can impede blood coagulation. Accordingly, an underlying disease of the heart or lung such as congenital heart disease that also involves an affected lung is considered to pose a very high risk in the case of an infection.

Mild Courses in Children and Adolescents

According to the current state of research and experience, only mild symptoms or no disease symptoms at all occur in particular in otherwise healthy children and adolescents in the case of an infection with Covid-19/SARS-CoV-2. In this young patient group, the infection has a mild course in most cases. This has been confirmed by publications that are available now resulting from studies involving several thousand children from China and the USA, as well as by reports from France, Spain and England. Only in rare cases do children and adolescents who have been infected with the virus develop pneumonia. In most cases, no symptoms at all or only mild ones such as cough, a runny nose or bronchitis are present.

Increased Vigilance, But No Panic

Accordingly, with respect to the reopening of schools, school attendance of children and adolescents with mild congenital heart disease is to be explicitly recommended. In this young patient group, the known positive effects of social interaction and of mutual learning outweigh the potential minor effects of a coronavirus infection.

The risk factors for severe disease courses in adults that are known so far are, for instance, chronic heart diseases, chronic respiratory diseases, diabetes and high blood pressure. There have been only case reports so far regarding the question if the situation is similar in children, adolescents and young adults with congenital heart disease. Besides the investigation and development of suitable drugs and vaccines, there continues to be a worldwide effort to closely monitor the disease situation also in at-risk patients with congenital and acquired pre-existing heart or lung conditions. On the basis of this, the most suitable prevention and treatment measures are hoped to be identified and advanced. The currently available data are not yet sufficient.

Until further notice, increased vigilance should therefore be exercised regarding all children, adolescents and adults with congenital heart disease that is classified as moderate to severe, just as with other infectious diseases. In these cases, issues such as returning to school or the workplace should by all means be previously discussed with a treating pediatric cardiologist or ACHD cardiologists, respectively, and alternative solutions should be found or applied for, if need be.

At-Risk Groups

The group of children, adolescents and adults with congenital heart disease to whom a coronavirus infection would pose a high risk can be assumed to be comparable to the patient group for which an infection with, for instance, influenza or RS-viruses or others causing severe respiratory disease, can be threatening. This risk group includes babies with heart defects that have not been corrected yet, children and adults with significantly increased or decreased pulmonary blood flow, as well as children and adults with a problematic Fontan circulation, heart failure or pulmonary hypertension. The risk is particularly high in heart patients with a congenital immune deficiency (e.g. in cases of 22q11 or trisomy) or heart patients after heart transplantation  or lung transplantation who are on medication impairing the immune function, as well as in patients aged 50 years or older. However, studies confirming these particular at-risk groups also in connection with a Covid-19/SARS-CoV-2 infection are still pending.

Prevent Correctly, Check the Vaccination Status and Slow Down the Spread

In summary, we maintain our recommendation for affected patients, their parents and relatives to absolutely follow the current instructions of the authorities in charge, as well as to observe the sanitary regulations. In this context, we also urgently recommend those belonging to an at-risk group to check their influenza vaccination status. Cases of a double infection with corona and influenza were also reported. Since pneumonia is the main complication, risk patients with congenital heart disease should also urgently check their current pneumococcal vaccination status. This can safely prevent a double infection or a secondary infection and the associated risks.

In general, just as heart-healthy individuals, all patients with congenital heart disease should try to protect themselves from an infection in whatever way they can. Above all, this also helps the primary goal of slowing down the spread of the coronavirus.

Frequently Asked Questions

  • Should my child and/or I visit a doctor or a hospital now?

    Please continue having your routine examinations to prevent a potential deterioration of your state of health in time. Contact your doctor, pediatric cardiologist or ACHD cardiologists immediately by phone or e-mail if you or your child experience breathing difficulties, heart complaints, a reduced exercise capacity or heart rhythm disorders. Please do not discontinue any prescribed medication at your own discretion; make sure to always consult your treating physician first. Consult with your treating physician, pediatric cardiologist or ACHD cardiologists in any case, also regarding questions about diseases or specific risks for your heart-child or yourself, if you have congenital heart disease yourself. Do not visit a medical practice, hospital or hospital department without giving advance notice. Make sure to give advance notice and obtain confirmation by phone before keeping scheduled appointments. In addition, refer to the respective websites of hospitals and medical practices for the most recent information.

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  • Should my child with congenital heart disease stay at home?

    In principal, outdoor activities, as well as attending school, are absolutely recommended for children with mild congenital heart disease. In the case of moderate to severe heart defects, however, the treating pediatric cardiologist should be consulted at any rate. In these cases, the individual risk has to be assessed for each patient and, if necessary, alternative ways of schooling are to be considered.

    Relevant questions regarding social law have been answered by the Bundesverband Herzkranke Kinder e. V. (Federal association of heart-children; BVHK), among others.

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  • Should I stay at home to avoid an infection of myself or my child?

    The thoughts mentioned above apply to children, adolescents and adults with congenital heart disease. Adults with congenital heart disease or parents of patients with congenital heart disease, who work at medical institutions, care facilities, day care centers, schools or other community facilities, where the risk of getting infected is higher in general, are urgently recommended to consult their treating cardiologist; in addition, they should check with their employer regarding sufficient infection protection measures at the workplace and discuss if there are any alternative work tasks with a more effective infection protection. In the case of jobs that involve (short) contact to many people, e.g. in the retail sector, the food service industry or in the public transportation sector, the recommended sanitary measures should be observed at any rate to protect oneself or family members with an increased risk.

    Relevant questions regarding social law have been answered by the Bundesverband Herzkranke Kinder e. V. (Federal association of heart-children; BVHK), among others.

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  • What should I do if I have reasonable cause to suspect an infection?

    Should you notice disease symptoms in yourself or your child or/and have a reasonable cause to suspect an infection, for instance after having had contact with an infected person, please avoid direct contact with any additional people and refrain from using public transportation as well as waiting areas/waiting rooms. Do not visit a medical practice, hospital or hospital department without giving advance notice. Contact your primary care physician or your pediatrician by phone. Many cities and communes have mobile medical teams for administering the tests. In the case of a reasonably suspected corona infection, patients with moderate and severe congenital heart defects should always also be seen by a pediatric cardiologist or an ACHD cardiologists, depending on their clinical state.

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  • Does it make sense to wear a nose and mouth mask in public?

    Following the distancing and hygiene regulations is evidently the most important and most effective protection from getting infected. In practice, this means keeping a distance of at least 1.5 to 2 meters, washing your hands thoroughly and repeatedly, observing the cough and sneeze regulations and self-isolation in the case of an infection.

    In addition, the Robert Koch Institute generally recommends wearing a nose and mouth cover in certain situations in public.  Such situations include gatherings of several people in closed areas with an extended period of stay (e.g. at school or the workplace), or situations where keeping a distance of at least 1.5 meters from other people is impossible (e.g. in shops, on public transportation).

    Wearing a community mask or a surgical mask cannot, however, replace the described protective measures. This particular measure only helps protecting others. It reduces the risk of transmitting the infection to others by coughing, sneezing or talking and can thus help slowing down the spread of the virus. There is no sufficient scientific proof that a community mask or a surgical mask protects oneself from getting infected (self-protection).

    In addition, handling such a protective cover/mask correctly is of vital importance. The mask has to be placed exactly over the mouth and the nose (that is, it has to be tight-fitting) and it has to be replaced once it is soaked. While wearing it, you must not touch or adjust it and you must also not wear it around your neck. The correct care of the mask is equally important. After being used once, community masks should be washed at 95 degrees (Celsius), if possible, or at 60 degrees at the very least. After being washed, they have to be dried completely. You can find further important information on the correct use and care of nose and mouth masks at the Federal Institute for Drugs and Medical Devices (Bundesinstitut für Arzneimittel und Medizinprodukte, BfArM).

    Please also read all this information from the Robert Koch Institute (RKI).

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  • I am a Fontan patient. Do I have to worry about ventilation therapy in the case of an infection?

    Apart from case reports, there are no reliable data so far regarding the question of whether Fontan patients with severe congenital heart disease involving the lung have an increased risk of getting infected with the coronavirus. However, a severe disease course has to be assumed in the case of an infection in these patients. In principle, a Covid-19 infection with a severe course involving pneumonia can be treated with ventilation therapy, as it does in other patients. However, due to these patients’ specifics, this therapy should be provided by centers that are experienced in treating congenital heart disease.

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Hotline

You can receive general information, as well as personal advice on the coronavirus, by using the patient service of the National Association of Statutory Health Insurance Physicians (Kassenärztliche Bundesvereinigung) at the number 116 117.

We Will Keep You Updated

Should we be presented with new findings or a different situation in the coming days or weeks, we will inform you immediately.

The Management Board of the Competence Network for Congenital Heart Defects

Prof. Dr. med. Hashim Abdul-Khaliq
Chair and Speaker of the Management Board

Prof. Dr. med. Helmut Baumgartner
Deputy Chair of the Management Board

Prof. Dr. med. Christian Schlensak
Deputy Chair of the Management Board

Managing Director
Dr. med. Ulrike Bauer


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