Peripartum cardiomyopathy: heart failure around pregnancy and birth

Cardiomyopathy is a general term for diseases of the heart muscle. The NHS says that in the type called dilated cardiomyopathy the muscle walls of the heart become stretched and thin so they cannot squeeze properly to pump blood, and it lists pregnancy among the things that can play a role, noting that peripartum cardiomyopathy is rare and sometimes develops during pregnancy or within 3 months of the baby's birth.

Cardiomyopathy UK describes PPCM as a rare type of heart muscle disease that occurs during the last part of, or in the first few months after, pregnancy. The heart becomes enlarged and weakened and less able to pump blood than normal. It usually causes heart failure, which the NHS explains means the heart cannot pump blood properly; it does not mean the heart has stopped working or is about to stop.

The causes are not fully understood, and the NHS notes that for many people with dilated cardiomyopathy the cause is unknown. What matters in practice is recognition. A new mother who feels unusually breathless, or a pregnant woman whose breathlessness is getting worse, deserves a proper assessment rather than reassurance alone.

Cardiomyopathy UK says the symptoms of PPCM are clear but similar to other symptoms that can occur in pregnancy, and that it is important to be aware of any that are worse than would normally be expected, or that get worse over time. It lists the symptoms of heart failure.

• Breathlessness, especially when resting or lying down.

• A cough.

• Water retention causing swelling in the ankles and tummy.

• Abnormal heart rhythms, especially an abnormally fast heart rate.

The NHS lists symptoms of heart failure, including feeling out of breath doing everyday activities or lying down, feeling weak, light-headed or very tired, swelling in the feet, ankles, legs or tummy, sudden weight gain, coughing at night and coughing up frothy pink phlegm. It says to see a GP if you think you have symptoms of heart failure, and to ask for an urgent GP appointment or get help from NHS 111 if you feel breathless when lying down or from everyday activity, are coughing up frothy pink phlegm or have suddenly gained weight.

The NHS says to call 999 if you have severe difficulty breathing, such as gasping, choking or being unable to get words out, if your lips or skin are pale, blue or grey, or if someone has passed out and is not responding normally. If you are pregnant or have recently given birth, mention that when you call, and contact your maternity unit or midwife for symptoms that worry you; they know your history and can arrange assessment.

Cardiomyopathy UK says that when potential symptoms are seen the woman should be urgently referred to a cardiologist. Tests check how well the heart is working and whether the symptoms are due to pregnancy, other conditions or cardiomyopathy, and include a medical history, a physical examination which may look at whether breathing becomes more difficult lying flat, and blood tests to check how the kidney, liver and thyroid are working and to look for hormones that may indicate the heart is under stress.

The NHS lists the heart tests used to diagnose cardiomyopathy more generally as an electrocardiogram (ECG), echocardiogram, MRI scan, heart rhythm monitoring over 24 or 48 hours and exercise tests, and notes that a detailed family tree may be needed for some diagnoses. An echocardiogram is an ultrasound scan of the heart.

Cardiomyopathy UK says treatment focuses on managing the symptoms of heart failure and is individualised to the symptoms the woman is experiencing and the stage of pregnancy. It lists the medicines that may be used: water tablets (diuretics) to reduce fluid build-up, beta-blockers to reduce the rate and force of the heart's contraction, and ACE inhibitors, which make it easier for the heart to work.

The NHS describes heart failure treatment in general as aiming to ease symptoms and prevent the condition getting worse, with medicines to make you pee more, widen blood vessels and slow the heart, and in some people surgery or devices such as a pacemaker or implantable defibrillator. It says everyone diagnosed with heart failure should be offered cardiac rehabilitation, which may include supervised exercise, lifestyle advice and support groups. Which medicines are suitable around pregnancy and breastfeeding is a decision for the specialist team, who will take the stage of pregnancy into account.

Cardiomyopathy UK says around 70% of women recover by 1 year after diagnosis, which also means that some do not fully recover and need long-term follow-up. The NHS says that for cardiomyopathy there is usually no cure but treatment can be effective at controlling symptoms and preventing complications, and that dilated cardiomyopathy carries risks of heart failure, heart valve problems, an irregular heartbeat and blood clots, so regular appointments are needed to monitor the condition.

Questions about future pregnancies are best discussed with your cardiology team and obstetric team before you conceive. The NHS also advises that if you have heart failure you should tell the DVLA and check with your insurer, and that you may need adjustments at work depending on your condition.

Cardiomyopathy UK offers information sheets on PPCM and on the heart and pregnancy, and an online support group for people with PPCM and their loved ones. The NHS lists the British Heart Foundation and Pumping Marvellous among sources of information and support on heart failure. Looking after a newborn while recovering from heart failure is hard, and it is reasonable to ask your team about practical help.