Coarctation of the aorta: symptoms, diagnosis and treatment

The BHF says symptoms differ between adults and children. In childhood it may first be noticed because of high blood pressure or difficulty breathing, caused by the heart working harder. Most adults who find out they have coarctation of the aorta will not have any symptoms, and it is often picked up during a routine test such as a blood pressure check.

When adults do get symptoms, the BHF lists high blood pressure, shortness of breath, tiredness in the legs, leg cramps and cold feet. High blood pressure is one of the most common.

The NHS describes symptoms of congenital heart disease in babies and children more generally: difficulty feeding, being slow to put on weight and grow, and swelling around the tummy and in the hands, ankles and feet. Later symptoms include feeling tired all the time, shortness of breath, sweating more than usual with cool and clammy skin, heart palpitations, and blue or grey areas on the skin and lips (cyanosis). A heart murmur, an unusual sound a doctor can hear with a stethoscope, is common.

The aorta is the main artery in the body, carrying oxygen-rich blood away from the heart to the rest of the body. In coarctation, the BHF explains, part of the aorta is narrower than it should be. The narrowing stops blood flowing as easily as it should, so the heart has to work harder. This can make the left ventricle (one of the heart's main pumping chambers) thicker and the heart weaker over time.

The BHF says many people with coarctation of the aorta live a normal life, but over time it can cause problems with the heart such as heart failure and high blood pressure.

The BHF explains why blood pressure differs between arms and legs: the narrowed part of the aorta is usually found after blood has already been sent to the upper body, so the upper body gets much more blood while the lower body gets less.

The sources read for this guide do not give a specific cause of coarctation. The NHS says congenital heart disease in general develops while the heart is being formed in the womb. Sometimes it is caused by an altered gene passed on from a parent, but often there is no clear reason.

The NHS lists things that may make a baby more likely to have congenital heart disease: the mother living with obesity, smoking or exposure to second-hand smoke, gestational diabetes, and an infection such as rubella. If you are worried about your own pregnancy, speak to your midwife or doctor.

The BHF says coarctation can sometimes be diagnosed before birth during an ultrasound, but it is not always noticed before or at birth and can be diagnosed later in life, sometimes during tests such as listening to the chest or taking blood pressure. The NHS says congenital heart disease is screened for at the 20-week scan, but the scan cannot find all conditions, and sometimes it is not diagnosed until adulthood.

If your doctor notices something abnormal, they will arrange extra tests. The BHF lists a CT scan, ECG, MRI, chest X-ray and echocardiogram, and says some people are asked to have a type of heart catheterisation to assess the heart in more detail. If your doctor thinks you might have coarctation they may check blood pressure in your arms and legs.

The BHF mentions two features doctors may talk about. A heart murmur is an extra noise caused by blood not flowing smoothly, and is usually followed up with an echocardiogram. Rib notching is when a thickened left ventricle pushes against the ribs, moving them slightly; it is harmless and only seen on a chest X-ray.

The BHF says there are different options and the choice depends on the size and location of the narrowing. You can discuss your best option with your doctors.

After a stent, the BHF says most people can go home within a few days and that it is normal to feel tired afterwards, though most feel back to normal after a few days. Before leaving hospital the recovery team will explain what you can and cannot do.

Surgery is done under general anaesthetic and is an option if balloon dilatation and stenting is not suitable. The BHF has tips to help if you are worried about surgery. For babies, the NHS says some types of congenital heart disease need surgery soon after birth, while others can be managed later.

The BHF says that after repair most people live a normal life. You will be offered appointments at a congenital heart disease specialist clinic, where your heart is checked for the rest of your life. Even if you feel well, attending is important because changes in the heart can occur before symptoms.

Re-coarctation means the narrowing comes back. The BHF says it can happen at any point in life, because the same part of the aorta narrows or another part becomes too large, and you may need treatment to repair the aorta again.

The NHS adds practical advice for anyone with congenital heart disease: keep to a healthy weight and diet, take care of your teeth with regular dental check-ups because gum infections can cause complications, stay physically active as advised by your care team, and do not smoke, vape or use illegal drugs. The BHF says most people who have had coarctation repaired can enjoy exercise, though some activities may put too much strain on the heart, so talk to your cardiology team first.

The BHF says people with congenital heart conditions have an increased risk of endocarditis, a rare infection of the heart valves and lining, and that your doctor or dentist might recommend antibiotics before or after some procedures.

The BHF says that if you are pregnant or planning a family you should tell your doctor so you can get support and specialist care, as there may be more risk of problems if you have coarctation. The NHS gives the same message for congenital heart disease: tell your care team, who can advise how to make the pregnancy as safe as possible and provide additional treatment as required.

The NHS says to call 999 if you or a child have lips, tongue, face or skin that suddenly turn blue or grey (on brown or black skin it may be easier to see on the palms, soles of the feet, lips, gums and inside the eyelids), difficulty breathing, chest pain, confusion, drowsiness or dizziness, heart rhythm problems such as a very fast or irregular heartbeat, or a child who is limp, floppy or not responding as they normally do. Do not drive yourself to A&E.

The NHS also says to ask for an urgent GP appointment or get help from NHS 111 if you think you or a child may have symptoms of congenital heart disease, and to call 111 for advice for a child under 5. If you already have a coarctation diagnosis, contact your specialist team if you notice new breathlessness, new leg symptoms or a change in how you feel.

On the NHS, if you or your child are diagnosed with congenital heart disease you will be referred to a specialist team at an NHS hospital. Children are looked after by paediatric cardiology teams, and adults by adult congenital heart disease services, with lifelong follow-up.

Some people choose a private cardiology opinion or scans. If you do, ask for results to be shared with your congenital heart disease team and make sure your regular specialist checks continue.