SUDEP before, during

pregnancy and following

birth
Kim Morley, ACP, INP, RM, RN
Epilepsy Specialist midwife/nurse
practitioner
Twitter (X) @epilepsymidwife
www.womenwithepilepsy.co.uk

This Photo by Unknown Author is licensed under CC BY-SA-NC

Introduction
Social stigma,
misunderstanding, false
Epilepsy one of the world's
beliefs and discrimination
oldest diseases.
entrenched in history & little
has changed

Risk of premature death 2-3

Approximately 80% cases of times higher than general
epilepsy worldwide people population but significantly
in developing regions. higher in low-middle
income countries. This Photo by Unknown Author is licensed under CC BY-SA-NC

Contradictory evidence
Guidelines state individuals
concerning question of
with epilepsy and their
whether to inform patients
families or careers should
about the possibility of
be given access to
sudden unexpected death
information on SUDEP.
in epilepsy (SUDEP).
Sudden unexpected
death in epilepsy
 SUDEP is a rare but fatal complication of epilepsy
 Majority of SUDEP cases linked to epileptic seizures.
Minor portion occurs in the absence of signs of
epileptic seizures
 SUDEP mostly occurs in association with nocturnal
and generalized or focal to bilateral tonic-clonic
seizures
 The lethal, probably reversible cascade includes
postictal central apnoea followed by
bradyarrhythmia and asystole
Pensel, M.C., Nass, R.D., Taubøll, E., Aurlien, D. and Surges, R., 2020.
Prevention of sudden unexpected death in epilepsy: current status
and future perspectives. Expert Review of Neurotherapeutics, 20(5),
pp.497-508.
Prevalence pregnancy related epilepsy deaths
Country Triennium period No. of maternities No. of maternal No. of deaths due Rate of epilepsy
deaths to epilepsy related deaths per
100,000 maternities

UK 2006-08 2,291,463 261 total 14 0.61

2013-15 2 305 920 202 total 8 0.32
2016-18 2 235 159 229 total 18 0.74
2019-21 2,066,997 241 total 17 0.76

Japan 2013-15 3,039,032 133 total 5 0.16

2016-18 2,841,524 128 total 2 0.07

1,223 per 100,000

2020 est.
South Sudan
1,063 per 100,000
Chad 2020 est.

1,047 per 100,000

Nigeria 2020 est.

Central African 835 per 100,000

2020 est.
Republic
620 per 100,000
Afghanistan 2020 est.

103 per 100,000

India 2020 est.
 MBRRACE-UK 2020¹
22 WWE died pregnancy–1 year
18 due to SUDEP
Doubling+ from 2013-15 report
2 women drowned and 2 women status epilepticus

MBRRACE-UK 2023²
17 women died pregnancy-1 year
14 due to SUDEP
Near doubling of SUDEP between 2013-15 and 2019-21
1 unascertained, 1 epilepsy/substance abuse, 1 epilepsy
complications

1. Marian Knight, Adrian Wills, Sreeman Andole, Kathryn Bunch, Samantha Holden, Sebastian Lucas, Kim Morley, Catherine Nelson-Piercy, Judy Shakespeare, Esther Youd on behalf of the MBRRACE-UK neurology chapter-writing group. In
Knight M, Bunch K, Tuffnell D, Shakespeare J, Kotnis R, Kenyon S, Kurinczuk JJ (Eds.) on behalf of MBRRACE-UK. Saving Lives, Improving Mothers’ Care - Lessons learned to inform maternity care from the UK and Ireland Confidential
Enquiries into Maternal Deaths and Morbidity 2016-18. Oxford: National Perinatal Epidemiology Unit, University of Oxford 2020: p36-42.
2. Allison Felker*, Kim Morley*, Pooja Dassan*, Upma Misra, Samantha Holden and Marian Knight on behalf of the MBRRACE-UK neurology chapter writing group. Learning from Neurological complications. In: Knight M, Bunch K, Felker A,
Patel R, Kotnis R, Kenyon S, Kurinczuk JJ (Eds.) on behalf of MBRRACE-UK. Saving Lives, Improving Mothers’ Care Core Report - Lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths
and Morbidity 2019-21. Oxford: National Perinatal. Epidemiology Unit, University of Oxford 2023: p70-82
 Sudden unexpected
death in epilepsy (SUDEP)
‘No one talked
about SUDEP
prevention
tactics’  Most important direct epilepsy‐related cause of death ¹
 SUDEP affects 1 in 1,000 adults with epilepsy annually ²
 10-fold increase during pregnancy and postnatal year
often associated with suboptimal care 3
 Age 20-40 years higher risk for SUDEP encountering
‘The first many women during pregnancy & postnatal year
neurology  Risk is not constant
appointment was
booked for one
 Risk highest if tonic clonic seizures/prolonged
seizures/injuries associated with seizures last 12 months
week following
her death.’  Increased risk people with learning disability
-too little, too  Obesity & multiple co-morbidities prevalent in maternity
late… deaths

1. DeGiorgio CM, Curtis A, Hertling D, Moseley BD. Sudden unexpected death in epilepsy: risk factors, biomarkers, and prevention. Acta Neurologica Scandinavica. 2019
Mar;139(3):220-30.
2. Harden C, Tomson T, Gloss D et al. Practice guideline summary: sudden unexpected death in epilepsy incidence rates and risk factors: report of the Guideline Development,
Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Epilepsy Society. Epilepsy currents. 2017 May;17(3):180-7.
3. Knight M, MBRRACE-UK. UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2013–15. Oxford: National Perinatal Epidemiology Unit, University of Oxford 2017.
 Recurring risk
factors pregnancy
continuum

Poor adherence No pre-conception Low serum Delay in multi- Difficult living

antiseizure counselling & lamotrigine & disciplinary team situation, learning
medicines unplanned levetiracetam levels communication, disability (LD),
(ASMs), lack of pregnancy changing medication isolated & Black,
efficacy, No safety advice doses, no action when Asian & Minority
ineffective No neurology or
provided & no SUDEP women report Ethnic (BAME)
dosage epilepsy specialist
risk minimization
support during seizures communities,
pregnancy discussed difficulty with English
Sleeping prone language.
and/or alone
Alcohol and
substance misuse
 Key Learning MBRRACE- UK 2020 & 2023
 Improve guidance for SUDEP awareness, risk assessment and risk minimisation for WWE before, during and after
pregnancy & embed in care pathway
 Enable women to access designated epilepsy care team <2 weeks.
 Regard nocturnal seizures as ‘red flag’ & urgent referral to epilepsy service/obstetric physician.
Develop standards of care for joint maternity and neurology services to enable:
 Early referral in pregnancy, particularly if pregnancy is unplanned
 Optimise anti-seizure medicines regimens
 Rapid referral for neurology review if women have worsening epilepsy symptoms
 Pathways for immediate advice for junior staff out of hours
 Postnatal review to ensure anti-seizure medicine doses are appropriately adjusted
 Safety precautions may significantly reduce accidents and minimise anxiety.
 Active seizures: minimise period of time unobserved should be considered.
 Involve social care in planning safe accommodation where necessary
 Shared decision making and counselling tool development regarding medication use in pregnancy and
breastfeeding, including specific information on the benefits and risks of different medications and non-adherence
 Obstetric teams should take urgent action when pregnant women with a current or past diagnosis of epilepsy
have discontinued anti-seizure medication without specialist advice.
Martha

No pre-
Booked at 20 Homeless-bedsit
conception
weeks hostel
counselling

Focal epilepsy:
on-going tonic Type 1 diabetes- Mild learning
clonic seizures HBA1C 92. disability
from sleep

History
BMI 43 Smoking 20 daily substance
abuse
 Adverse Disease 2 Negative health
Disease 1 interactions e.g. outcome
Bio/Psycho/ substance e.g. status
epilepsy misuse, epilepticus,
Social diabetes SUDEP or suicide

Syndemic
synergistic epidemic
SEVERE & MULTIPLE DISADVANTAGE PROMOTES DISEASE
CLUSTERING
 Be hypervigilant with
cases like this
 There can be a focus on diabetes or other co-morbidities and
inattention to epilepsy
 Late booking and unplanned pregnancy red flag for increased
maternal risks
 Absence of seizure remission in previous 5 years red flag for
pregnancy
 Nonadherence or poor adherence of ASM and other pharmacy
 Sleeping alone and poor social support
 Impact of learning disability on behaviours, cognition and
vulnerability
 Children and adult social service involvement and subsequent
removal of a child red flag for maternal mortality

Identification of patients who will not achieve seizure remission within 5 years on AEDs. David M. Hughes, Laura J. Bonnett, Gabriela Czanner, Arnošt
Komárek, Anthony G. Marson, Marta García-Fiñana Neurology Nov 2018, 91 (22) e2035-e2044; DOI: 10.1212/WNL.0000000000006564
Recommendation
Ensure SUDEP awareness, risk assessment and risk minimisation is standard care for
women with epilepsy before, during and after pregnancy and ensure this is embedded
in pathways of care (Knight, Bunch et al. 2020)

Minimise unplanned pregnancy risk
Is there a current risk of pregnancy?
Discuss future family plans
?Understanding re effective
contraception?
Obtain comprehensive medical
history/current treatment to ensure chosen
contraceptive method is safe for individual
13
 Consider interactions ASM & hormonal
contraception
 Availability of contraceptive methods
 Discuss choice and possible effects on
moods, weight, skin and periods?
 Typical use failure rate of chosen method
 Explain how soon after starting this
contraception they will be protected from
pregnancy?
Pre-pregnancy SUDEP risk reduction
 Refer women and girls to an epilepsy
specialist team for a review of their anti-
seizure medication options before
considering pregnancy (NICE 2022).
 Ensure diagnosis certainty
 Identify women at risk-generalised tonic
clonic seizures, uncontrolled epilepsy,
learning disability
 Discussion with families: SUDEP checklist
 Early surgical referral
 Appropriate antiseizure medicine(s)
 Regular enquiry re adherence behaviors
 Lifestyle factors-avoid sleep deprivation,
alcohol and stress
 ASM advice during illness, D&V, co-
pharmacy, over the counter medicines
 Train family members/carers first aid
management seizures
 Safety pillows
 Emergency medicine administration
training-midazolam, diazepam,
lorazepam-turn from prone to recovery
position
 BLS training of high-risk women
 Seizure monitoring devices-do not have
evidence of SUDEP prevention
Vignette
Older primigravid woman with juvenile myoclonic
epilepsy. Care with neurologist lapsed four years
earlier. Prior to pregnancy, taking three anti-seizure
medications. She expressed a desire to get pregnant
to GP who referred her for pre-pregnancy
counselling. She was seen by an obstetrician but a
neurologist was not available; her care was
discussed with him by phone after the visit. Four
months later, obstetric/neurology clinic appointment
& reported pregnancy. Advised about risks of
polypharmacy & her serum levels were checked for
all anti-seizure medications. Whilst waiting results,
woman informed staff she stopped phenobarbital.
She was advised to restart. She died from SUDEP one
week later. Two of her three anti-seizure medications
were in therapeutic range; phenobarbital was not.

This Photo by Unknown Author is licensed under CC BY-SA-NC

 They said I could experience
SUDEP, but I was so worried
about harming my baby, I
stopped taking my medicines.

They spoke
about how
harmful my
medicines were
to the baby
Sensitive counselling
• Phenobarbital use in UK considerably reduced, but in LMIC it is
prevalent. If prescribed, sudden withdrawal should be avoided as
this can lead to withdrawal seizures.
• Whilst women with epilepsy should be encouraged to be their
own advocates and make decisions about their health, they must
also be provided with all the necessary information about the risks
and benefits of medication and their concerns must be fully
explored. Especially true in high risk women such as those treated
with polytherapy anti-seizure medicines or co-prescribed other
medicines that can lower seizure threshold (such as
antidepressants) (Maguire, Marson et al. 2021).
• While serum analyses is useful when assessing adherence &
considering changes in anti-seizure medication doses, varying
capacity for fast serum analyses even in UK
• Minimising exposure through use of an ineffective ASM or dose
will benefit neither the woman nor her fetus (Knight et al. 2020).
Important to weigh up risks

Morbidity Pregnant
Foetus/baby
Mortality woman/mother
Risk of uncontrolled epilepsy

Pregnant woman

Stigmatisation, social exclusion, loss of employment, unable to drive

Injury: burns, dislocations, fractures, road traffic accident

Drowning

Status epilepticus
SUDEP
 Fetal risks
Focal seizures (unless evolve to T/C) unlikely to have major
impact on fetus. Foetal distress 2.5-3.5 mins reported with
impaired awareness 1
GTCS associated with hypoxia/lactic acidosis, transferred to
foetus from placenta; may lead to asphyxia 2
Seizure-related fall if blunt trauma to uterus, impact fetus3.
Death as a result of maternal accident or injury
Foetal death as a result of maternal death

1. Sahoo, S. and Klein, P., 2005. Maternal complex partial seizure associated with fetal distress. Archives of neurology, 62(8), pp.1304-1305.
2. Hiilesmaa V, Teramo K, Fetal and maternal risks with seizures In: Harden C, Thomas SV, Tomson T, Hoboken NJ. Epilepsy in women. Wiley-Blackwell, 2013: 115-27
3. 3. Tomson, T., Battino, D., Bromley, R., Kochen, S., Meador, K., Pennell, P. and Thomas, S.V., 2019. Management of epilepsy in pregnancy: a report from the International League Against Epilepsy Task Force on Women and
Pregnancy. Epileptic Disorders, 21(6), pp.497-517.

20
Risks associated with ASM

 Adverse effects
 Interactions
 Adherence behaviors
 Continuity supply, brand,
formulation
 Not controlling seizures
 Wrong drug for seizure type
 Dose not reviewed
 Diagnosis incorrect
 Polypharmacy
 Teratogenesis
 Drug increases/changes
pregnancy
 Complex regimes
Potential risk MCM to developing baby from main ASMs¹

 Lamotrigine and levetiracetam safer than other ASMs: similar

stats general population
 General population 2-3 out of 100 babies
 Valproate 10 of 100 babies Pregnancy prevention
programme
 Carbamazepine 4-5 of 100 babies
 Phenobarbital 6-7 of 100 babies
 Phenytoin about 6 of 100 babies
 Topiramate 4-5 of 100 babies
 Phenobarbital or phenytoin increased risk of child difficulties
with learning and thinking ability.
 Phenobarbital, topiramate, zonisamide >risk small for
gestation
 Gabapentin, pregabalin & zonisamide: more research
required
Will this affect
your
management
advice?
How to reduce risk factors
 Communicate: strategies to reduce
risk- before, during and after
pregnancy at each health professional
encounter
 Awareness tools: SUDEP safety checklist
Maternity epilepsy toolkit EpSMon
Epilepsy self-monitor Epilepsy Society
safety and risk templates
 Risk: individual ASM regime and
dosage:UKtis Medicines information
service LactMed
 Epilepsy safety information: women
with epilepsy, family, friends,
colleagues, healthcare professionals
 Report: MHRA yellow card UK
pregnancy register
Pre-booking
or during
booking
What the maternity professional
needs to know
Refer women and girls with
epilepsy who are planning
pregnancy or are pregnant
to an epilepsy specialist
team for a review of their
anti-seizure medication
options (NICE 2022).
Ensure information about the
care of women and girls
during pregnancy is shared
between the epilepsy
specialist team, a specialist
obstetric team and primary
care (NICE 2022).
 Regular planned antenatal care
with a designated epilepsy care
team
 Assess for risk factors for seizures,
such as sleep deprivation and
stress; adherence to anti-seizure
drugs-including vomiting; and
seizure type and frequency.
 Follow up urgently non-attendance
 Water safety advice
 Involve social care in planning safe
accommodation where necessary
 Treat tonic clonic seizures arising
from sleep as red flag requiring
urgent epilepsy/neurology advice
 Safety advice for maternity hospital admission
from evidence and maternal experiences
 Multi-professional plan drawn up antenatally
 Risk seizures in labour low but recommend birthplace in Obstetric Unit If my partner
needed the
 Safety, safety, safety!!!!! Individual risk assessment I set reminders
toilet, I made
sure the
on my phone to
 Avoid baths/pool delivery unless vigilant supervision make sure I did
midwife
stayed with
not miss any
 Avoid being admitted to single room unattended medicine doses
me
I used
 Avoid pethidine. Diamorphine in preference mindfulness
I did my own risk to keep me
 If GA necessary, avoid ketamine and assessment &
felt like the
calm

sevoflurane expert & central

to decision
making.
 Avoid hyperventilation-if absence seizures
 Avoid triggers for seizures
 Discuss adherence to own ASMs at prescribed times
 Reduce risk vomiting-may need antiemetic
‘No one warned us risks could
increase in postnatal year.’
MBRRACE 2019-21
 11/17 women died after the end
of pregnancy.
 2 died up to six weeks postnatal
and 9 between 6-52 weeks.
 9 women died due to SUDEP after
the end of pregnancy
 Reducing postnatal mortality risk

I always I never bath the

 Absolute risk seizures low but >risk seizures postnatal change children alone
baby’s nappy
 Triggers: stress, sleep deprivation & poor ASM on the floor
adherence
 Pregnancy‐related physiological changes now
reversed. Alteration of ASM dose should be planned
by neurology and communicated effectively to I bought a
fall alarm
obstetric team for action postnatal
 Advice: breastfeeding, seizure deterioration, ASM
intake & safety part of antenatal & postnatal
discussion1
 SUDEP checklist - EpSMon: Epilepsy Self-Monitoring
 What to consider
 Timely postnatal ASM adjustment Rest as much as …try and get a
possible don’t routine nailed
 Accurate advice re breastfeeding with ASM: Toxnet
over do it, work as soon as
 Stress importance of continuing ASMs out a plan for possible - this
night feeding helped me get
 Adverse effect monitoring: if rash discontinue until with your the sleep I
cause identified. Dependent gestation, dose, partner and needed which
gestational weight take as much is crucial to me
help as possible for seizure
 Safe feeding position control
 Feeding choice should be supported
 Advice: safety, night feeding, expressing
 Wean gradually, try to avoid sudden stop
in breastfeeding
Urgent review by neurology/epilepsy specialist if:
1. Diagnostic uncertainty or when urgent treatment review is
recommended
2. Seizures increased or uncontrolled during pregnancy
3. History of prolonged seizures or status epilepticus
4. Baby born with major congenital malformation
5. Woman is taking sodium valproate
6. Woman stopped ASMs during pregnancy
Prepare, prevent & empower
Change or dress baby on the floor rather than a bed or table in case I had a
seizure and baby fell off. Not to bath the baby by myself.

www.epilepsy.org.uk
www.epilepsysociety.org.uk
www.sudep.org
Conclusion
 Provide registration details of epilepsy
Reassesses diagnosis & Provide accurate
and pregnancy register, pregnancy
ASMs pre-conception contraception advice management and fetal surveillance
 Identify any safeguarding issues?
 Follow up any nonattendance, promptly
Support with weight
loss, smoking, alcohol &
Ensure folic acid is
prescribed  Ensure ASM plan in place in preparation
illicit drug use
of labour and postnatal
 Provide accurate advice re breast
Regular non- feeding
judgemental inquiry
Fast track referral at
about ASM adherence
& challenge non-
booking to MDT  Avoid admission to single room
adherence. unattended
 Discuss caring for baby safely
Immediate provision Provide risk assessment  Effective seamless multidisciplinary team
safety, first aid and
adherence advice
tools: SUDEP & drowning
prevention
working throughout
Thank you
KIM MORLEY
WWW.WOMENWITHEPILEPSY.CO.UK
TWITTER (X) @EPILEPSYMIDWIFE