This leaflet aims to give you information about atrioventricular septal defects (AVSD) and their long-term management.
Repaired Atrioventricular Septal Defect (AVSD)
You were born with a complicated hole in the middle of your heart involving the wall between the two collecting chambers (atria), the wall between the two pumping chambers (ventricles), and one or two of the heart valves. You have had an operation to repair the hole and the valve(s) in childhood. Although your heart has been repaired, and you may feel very well, we recommend long term follow up so we can watch out for certain problems.
Normal Heart
Atrio-Ventricular Septal Defect
Leaking valves
Despite successful repair, there is often some leak on one or more of the heart valves. In some cases, the leak worsens and may require another operation to fix it. If it is needed, this is very likely to be an open-heart operation.
Narrowed valves
In some patients a narrowing can develop in one of the valves, which occasionally requires another operation to fix it. If it is needed, this is likely to be an open-heart operation.
Palpitations
Because you have had previous heart surgery, you will have some scars in your heart. You have a slightly higher chance than normal of developing heart rhythm problems in later life.
Children/Pregnancy/Contraception
Whether you are a man or woman there is a higher risk than usual of your children being born with a similar heart condition. If you are planning a pregnancy, we can talk to you about this in more detail. We would recommend having a detailed look at the baby’s heart by ultrasound before they are born to assess for any possible problems. If you are a woman then we also need to make sure your heart will cope with being pregnant and therefore we would like to see you before you become pregnant.
For most women with a repaired AVSD, all methods of contraception are fine but please speak to your doctor or specialist nurse for more advice.
Exercise
Regular exercise is encouraged. It is good for your general health and wellbeing and beneficial for your heart and circulation. Activities such as walking, cycling, and swimming are ideal and it is important to warm up. We would not usually restrict your physical activities. If you have problems with leaky valves or heart rhythm you may have a reduced exercise capacity and you will need to modify your activities to cope with your symptoms. Your cardiologist will tell you if you need to restrict any physical activity.
Endocarditis
All patients who have had heart surgery are at risk of a serious infection in the heart (endocarditis). It is important to have good dental hygiene and you should visit the dentist every every 12 months. Some people require antibiotics before invasive dental treatment. Please ask your doctor or specialist nurse if this applies to you. Due to the increased risk of infection we would also advise against body piercing and tattoos.
Insurance
It can be difficult for people with congenital heart disease to get some types of insurance. Travel insurance may be more expensive and people who have congenital heart disease often struggle to get any type of life insurance.
There are some more sympathetic insurers who can be identified and contacted through the Somerville Heart Foundation.
We would recommend seeking advice from a specialist insurance advisor before applying for life insurance.
Contact us
ACHD Specialist Nurses
For clinical queries, please contact the ACHD Specialist Nurses.
Further Support and Advice
The Somerville Heart Foundation
For young people and adults with congenital heart disease.
Join as a ‘friend’ to access their benefits including advice around benefits, employment, pensions, will writing and insurance. They also have a counselling service and support groups.