Congenital heart disease is a general term for a range of birth defects that affect the normal way the heart works. The term "congenital" means the condition is present from birth.

The general advice provided to date relates only to adults and not children. Also, it does not give specific advice for adults or children with congenital heart disease. This is a new virus with a limited evidence base to make firm recommendations, but we believe, based on experience with other viral illnesses, that some patient groups may be more vulnerable than others if infected with COVID-19.

International data has shown that children can become infected with COVID-19 but do not, usually, appear to be as seriously affected as older patients. Although the symptoms may be milder, children can pass on COVID-19 to vulnerable adults who are more at risk.

- Single ventricle patients or those palliated with a Fontan (Total Cavopulmonary Connection) circulation

- Infants under 1 year with unrepaired congenital heart disease requiring surgery or catheter intervention e.g. VSD, AVSD or tetralogy of Fallot

- Those with chronic cyanosis (oxygen saturations <85% persistently)

- Patients with severe cardiomyopathies requiring medication

- Patients with congenital heart disease on medication to improve heart function

- Patients with pulmonary hypertension (high blood pressure in the lungs) requiring medication

- Patients who have undergone heart transplantation

- Patients with congenital heart disease and significant co-existing conditions e.g. chronic kidney disease or chronic lung disease.

Based on the Government definitions of social distancing, this would exclude attendance of such individuals at nurseries, school, college or universities. Avoidance of situations such as socialising with family, going to restaurants and children’s parties would also apply in the same way as the advice for high risk groups contained in the Government guidance.

Patients with reduced immunity e.g. patients with Down syndrome, or chromosome 22q11 deletion, and those taking long-term penicillin to prevent infection because of the lack of a functioning spleen and who do not fit the categories above, should follow the standard Government advice for vulnerable people unless their cardiac unit advises otherwise.

Patients with congenital heart disease with long-term high blood pressure (hypertension) should seek advice from their cardiac unit about social distancing.

This is an extremely difficult and stressful time for all at present. If you are in doubt about where you fit within the recommendations for social distancing, please contact your cardiac unit (by phone or email) for specific advice.

From communication with families and support groups, we have identified other areas of concern.

Many patients with congenital heart disease or heart failure may be on ACE inhibitors (e.g. captopril, lisinopril, enalapril) or angiotensin receptor II antagonists (e.g. losartan). The British Cardiovascular Society, British Society for Heart Failure and European Society of Cardiology Council on Hypertension have said that there is no clinical or scientific evidence to suggest that treatment with an ACE inhibitor should be discontinued because of COVID-19. Stopping these medications may cause worsening of their heart condition.

Our recommendation is that patients who are taking aspirin continue on their treatment unless advised differently by their cardiac team.

Use of paracetamol versus ibuprofen 

Although there is as yet no firm evidence, patients should use paracetamol rather than ibuprofen or other non-steroidal anti-inflammatory drugs (NSAIDs) to control fever and pain. The use of aspirin is different and addressed above.

The thymus gland is routinely removed during cardiac surgery needing a midline incision (scar in the middle of the chest). There is no evidence that this constitutes an additional risk for infection.

If you have a booked outpatient appointment or admission to hospital in the next few weeks, please check with your cardiac centre. It is highly likely that planned and non-urgent procedures may be postponed, as units are prioritising clinically urgent cases. Many units have also changed visiting policies to reduce the number of people entering hospitals.

The guidance advises that if your illness or the illness in any household members is worsening you should seek prompt medical attention. If it’s not an emergency, contact NHS 111 online at 111.nhs.uk. If you have no internet access, you should call NHS 111. If it is an emergency and you need to call an ambulance, dial 999 and inform the call handler or operator that you or your relative have coronavirus symptoms.

Please also alert your cardiac unit so that they are aware of the situation and can advise you.

Please do NOT come direct to hospital or go to a GP surgery.