Megan Gardiner was 17 weeks pregnant when she died on June 4, 2022 at her family’s home, which was caused by Sudden Unexpected Death in Epilepsy (SUDEP).
Chaired by Coroner for South Wales Central Area Kerrie Burge, the first day of the inquest set out the three areas that the inquest would focus on – namely the nature and extent of Megan’s pregnancy, the medication she was on and the advice and care she was given by medical professionals in regard to her care and treatment during her pregnancy.
This is the first inquest in Wales to look at the significance of SUDEP risk discussions in epilepsy care.
The inquest had originally been opened on October 6, 2023.
During the first day of the inquest, evidence was heard from Megan’s mother Alison Woolcock, Dr Benjamin Roper of the Barry Vale Group Practice where Megan was a patient, and Professor Phil Smith of the Epilepsy Centre at the University of Wales.
During her evidence, Alison described her daughter as “beautiful” and with a “wonderfully sarcastic sense of humour” who stood against injustice and was willing to help others.
Alison said that the risk of SUDEP was never directly brought up to her or Megan as a direct possibility related to Megan, rather just a generalised risk, which meant that it was not picked up and despite risks and a termination being discussed, it was never considered. This was despite, according to Alison, and other witnesses, noting that there were opportunities for these risks to be more specifically highlighted, including after an episode of ‘status epilepticus’ in 2015 where Megan suffered multiple seizures in a short period of time with no recovery and was rushed to hospital.
A possibility of sleep seizures was brought up during the inquest to multiple witnesses. Medical professionals stated that it could be very dangerous for anyone with sleep seizures to be left to sleep alone, and Alison said that if the family had been made aware of Megan being susceptible to this, they would have co-slept.
It was heard that Megan attended her epilepsy appointments with her mother until they turned remote in 2020 as a response to the coronavirus pandemic, at which time Megan had attended alone on the phone, and it was noted that Megan was compliant with her medication, although it was mentioned by Professor Smith that there were concerns that these medications were not working for Megan’s seizures as hoped.
Evidence said that Megan had been advised that if she wished to have children, which her mother said she did, a planned pregnancy would be best as medications could be adapted in this manner, as some epilepsy medications, such as sodium valproate, could be dangerous for babies.
It was heard that some changes to Megan’s medications were missed despite letters sent from the hospital, with the lamotrigine increased and zonisamide reduced in a bid to help her seizures as she decided against sodium valproate despite numerous discussions with medical staff who encouraged her to go on it as no other medications proved effective. This was despite it being noted that sodium valproate was “very dangerous” for babies.
It was also noted that while GPs would not initiate a SUDEP discussion, they would have been open to it if a specialist had advised, but no record of any such discussion was found.
It was revealed that Megan may not have fully understood the situation around sodium valproate being a temporary measure, leading to her deciding not to go on the medication, which it was later heard could have improved Megan’s seizures.
The inquest also heard that Megan had been seeking advice about the contraception from her GP and her epilepsy team, who advised a long-acting reversible method such as the coil or implant as some oral methods, such as progesterone pill, were known to interact with her epilepsy medications.
Professor Smith did say that he accepted the risk of SUDEP had not been made clear to Megan as an individual risk and this may have impacted her decisions around medications.
The inquest is set to continue all week at Pontypridd Coroner’s Court.
