HELLP syndrome: symptoms, treatment and what it means in pregnancy

HELLP syndrome affects the liver and blood clotting. Tommy's, the pregnancy charity, explains the name: H stands for haemolysis, where red blood cells break down; EL for elevated liver enzymes, which are a sign of liver damage; and LP for a low platelet count, since platelets are blood cells that help blood to clot.

The NHS lists HELLP syndrome among the serious, possibly life-threatening complications of pre-eclampsia, alongside seizures (eclampsia), stroke and stillbirth, and describes it as a rare liver and blood disorder. Pre-eclampsia is a pregnancy-related condition that causes high blood pressure and is most likely from 20 weeks of pregnancy onwards, although it can happen at any point in pregnancy and sometimes develops in the days or weeks after birth.

Tommy's says HELLP syndrome happens in about 1 in 200 pregnancies, but in 1 to 2 in every 10 people with severe pre-eclampsia. It is most likely to develop immediately after the baby is delivered, but it can appear any time after 20 weeks, and in rare cases before 20 weeks.

Tommy's says most people with HELLP syndrome have the key signs of high blood pressure and high levels of protein in the urine. Typical symptoms include bad pain just below the ribs, feeling sick and vomiting, extreme tiredness (fatigue) and headache.

These overlap with the symptoms of pre-eclampsia that the NHS lists: a severe headache that does not go away with simple painkillers, vision problems such as blurred vision or flashing lights, pain below the ribs, sudden swelling of the face, hands or feet, feeling very unwell, heartburn that does not go away with heartburn medicines and being sick. The NHS says any of these can be serious and need to be checked immediately.

• If you are pregnant, call your maternity unit if you have the number, according to the NHS.

• If you have recently given birth, or cannot reach your maternity unit, call 111.

• Because pre-eclampsia can develop in the days or weeks after birth, symptoms after you have gone home still need urgent attention.

The NHS says any of the symptoms of pre-eclampsia can be serious and need to be checked immediately. That applies while you are pregnant and for the days and weeks after birth, because the NHS says pre-eclampsia sometimes develops after your baby is born.

Tommy's points out that early signs such as high blood pressure and protein in the wee are things you probably will not notice yourself, which is why you are offered regular blood pressure and wee checks at antenatal appointments. Go to those appointments, and do not wait for the next one if new symptoms appear.

• If you are pregnant: call your maternity unit if you have the number (NHS).

• If you have recently given birth, or cannot call your maternity unit: call 111 (NHS).

• Symptoms that count include a severe headache that does not go away with simple painkillers, vision problems, pain below the ribs, sudden swelling of the face, hands or feet, feeling very unwell, heartburn that does not go away with heartburn medicines, and being sick (NHS).

The three terms are related but not the same. HELLP syndrome is not a separate condition that appears from nowhere: the NHS lists it, together with seizures (eclampsia), stroke and stillbirth, as a complication of pre-eclampsia.

Because HELLP syndrome is a complication of pre-eclampsia, the risk factors for pre-eclampsia are relevant. The NHS says it is not known what causes pre-eclampsia, and that you may be at higher risk if you have diabetes, high blood pressure or kidney disease, an autoimmune condition such as lupus or antiphospholipid syndrome, or have had pre-eclampsia in a previous pregnancy.

Other factors the NHS lists include a first pregnancy, being 40 or over, being from a Black or South Asian ethnic background, a multiple pregnancy, a family history of pre-eclampsia, 10 years or more since the last pregnancy, and a BMI of 35 or more before pregnancy. If a midwife or doctor thinks you are at higher risk they may prescribe daily aspirin from week 12 of pregnancy or calcium supplements; the NHS says not to start these unless advised.

Pre-eclampsia is picked up through routine antenatal blood pressure and urine checks. If a midwife or doctor thinks you may have it, the NHS says you will usually be referred to hospital for further tests, which can include a blood test and ultrasound scans to check the baby's growth. Blood tests are what show the liver enzymes and platelet count that define HELLP syndrome.

Tommy's says HELLP syndrome is potentially as dangerous as eclampsia, so you and your baby will be closely monitored. If you are more than 34 weeks pregnant, it is likely that your baby will be delivered as soon as possible. If you are less than 34 weeks and doctors feel it is safe to wait, you are likely to be given medicines to control blood pressure and reduce the risk of fits, and steroids to help the baby's lungs mature. You may also need a blood transfusion by drip.

The NHS says there is no cure for pre-eclampsia, but giving birth is often the way symptoms are relieved, and that it is often safer for the baby to be born early, in some cases before 37 weeks. Labour may be induced or a caesarean section offered, and you are monitored in hospital after the birth.

The NHS says pre-eclampsia symptoms usually go away after the baby is born, but sometimes they continue. After leaving hospital you may need medicine for a few weeks to lower your blood pressure and regular blood pressure checks.

Tommy's says that with treatment it is possible to make a full recovery from HELLP syndrome. Other complications of severe pre-eclampsia it lists include liver and kidney failure, stroke, fluid in the lungs and blood clotting disorders, but it stresses that because teams look for signs throughout pregnancy and treat immediately it is very unlikely you will develop these problems. Tommy's adds that babies born before 37 weeks may need extra care in a neonatal intensive care unit.

If you have had HELLP syndrome, a GP, obstetrician or midwife can discuss how it may affect future pregnancies and what extra monitoring or preventive medicine would be offered.

HELLP syndrome is managed in an NHS hospital maternity unit with obstetric, midwifery, anaesthetic, haematology and neonatal teams, and, because it is an emergency, through emergency pathways. Admission, monitoring, blood tests, delivery and neonatal care are free at the point of use.

Private maternity care exists, but severe complications such as HELLP syndrome are typically managed in units with intensive care and neonatal facilities, which are mainly NHS hospitals. If you have booked private antenatal care, ask how a pregnancy complication would be handled and where you would be transferred.