As of 2012, The Centre for Maternal and Child Death Enquiries (CMACE) has produced 8 reports in the UK. The latest report "Saving Mothers Lives" investigated 14 deaths of women with epilepsy. This report was published in March 2011 and covers a period from 2006 – 2008.
The impact of the tragic death of a mother during pregnancy cannot be overestimated. Yet the proportion of young women with epilepsy dying in pregnancy remains the same. Fourteen women died of epilepsy during pregnancy over a three year period, – the highest number from any other neurological disease and three times the number of deaths from asthma.
The actual cause of death in 11 of the 14 women with epilepsy was categorised as Sudden Unexpected Death in Epilepsy (SUDEP). The other 3 deaths were seizure-related deaths, one from status epilepticus, one from a fall and one died from bathing.
The findings were:
- Of 11 women who had sought antenatal care, only six were referred to a provider with an interest in epilepsy.
- In the majority of cases the mother was not referred for review by a neurologist despite a known history of epilepsy. It is likely that this resulted in failure to consider changing doses of medication or checking drug levels if necessary.
- Only six of the 14 women with epilepsy had received pre-pregnancy counselling. Several women might not have died if they had been advised about the maternal risks in pregnancies complicated by epilepsy. As a result, their care was less than optimal because neither they nor their carers realised that closer surveillance or changes to medications were appropriate
- Nine women with epilepsy were treated with lamotrigine but blood levels were not checked in any of the nine women. It is known that blood levels of the drug fall during pregnancy and that an increase in dose is needed for most.
- In some cases the obstetric and midwifery team do not appear to have perceived maternal epilepsy as a high-risk condition. This attitude is inappropriate given the large number of deaths from epilepsy in pregnancy.
- Some women stopped their medication. SUDEP is known to be more common in patients who do not take prescribed anticonvulsants and many women are reluctant to take anticonvulsants when pregnant or breast-feeding for fear of harming their babies.
- There was no evidence of risk
- A woman died while bathing. There was no evidence of specific advice about the safety of bathing.
- One-third of the women who died lived in difficult social circumstances and were at particular risk.
The first recommendation of the report:
- Women of childbearing age with pre-existing medical illness, whose conditions may require a change of medication, worsen or impact on a pregnancy should be informed of this at every opportunity and offered advice about the need for pre-pregnancy counselling
- The availability of pre-conception counselling