Megan Gardiner was 25 years old and 17 weeks pregnant when she tragically died in June 2022. An inquest into her death at South Wales Central Coroner’s Court has concluded that she died of natural causes and as a result of Sudden Unexpected Death in Epilepsy (SUDEP), occurring in pregnancy.
Megan was aged 13 when she was diagnosed with epilepsy. She experienced frequent tonic-clonic seizures, which were uncontrolled on her medication regime in the years prior to her death. The inquest was the first in Wales to address the importance of SUDEP risk discussions in epilepsy care.
During the inquest evidence was heard that Megan was at high risk of SUDEP. Kim Morley, advanced clinical practitioner in epilepsy, giving evidence at the hearing, commented that she had not seen a patient who was having as many seizures as Megan was before her death.
Consultant neurologist, Professor Angus-Leppan, gave evidence that, in her view:
The discussions had with Megan about contraception prior to her pregnancy (required for prescribing the most effective medication for Megan’s epilepsy, Sodium Valproate) were inadequate;
The possibility of understanding Megan’s night-time seizures was missed; and
The risk of SUDEP was not discussed with Megan or her family, there being no evidence of a detailed risk assessment to help Megan’s family protect her.
In her findings of fact, Assistant Coroner Ms Kerrie Burge stated that until April 2022 there was no documented confirmation that Megan’s high risk of SUDEP was discussed with her and nor was there any discussion of wider protective measures against such a risk. The Coroner found that even after April 2022, there was no individualised risk discussion with Megan.
The Coroner also identified that there were two opportunities for more open discussions with Megan about her risks and preventative measures prior to her death – in March 2020 when there was an attempt to prescribe Sodium Valproate medication, and after 23 May 2022, when Megan had her first obstetric/epilepsy joint clinic appointment.
The Coroner has now requested a further statement from the Health Board setting out how SUDEP risk is discussed with patients and how patients’ individual risks are sufficiently considered and addressed. The Coroner will then consider whether to issue a Prevention of Future Death Report.
After the inquest concluded, Megan’s mother, Alison Woolcock, said:
"There isn’t a day that goes by that I don’t think of my beautiful, sensitive, kind and funny daughter.
"If Megan had been cared for properly, she may still be here today. I feel like the medical professionals treated Megan’s care as an afterthought and did not prioritise the risk to her life. As a family we need to know why this was and to stop other epilepsy sufferers meeting the same fate."
Elaine Macdonald, Deputy Head of Civil Liberties at Broudie Jackson Canter, who represents the family, said:
“My clients are understandably devastated and angry about some of the evidence they heard at Megan’s inquest, in particular about how high Megan’s risk was and the support measures that could have been put in place.
Answers are needed around Megan’s care and the lack of advice given to the family on sudden unexpected death in epilepsy (SUDEP). There needs to be greater awareness and understanding about the risks for women with epilepsy like Megan.”
Notes:
Megan’s family were represented by Elaine Macdonald of Broudie Jackson Canter, and by counsel, Charlotte Law of Kings’ Chambers.
The family were supported by case worker Julia Stirling of SUDEP Action. For further information about SUDEP Action and their work, please visit: About Us | SUDEP Action
Other Interested Persons at the inquest hearing were Cardiff and Vale Health Board