'Women feel guilt and anger and they want peace' - the epilepsy drug that harmed babies

Pregnant women who took an epilepsy drug and say they were not warned of possible birth defects, feel a mix of "guilt" and "anger," one mother has said.

Sodium valproate, which is also used to treat bipolar disorder, can cause physical harm in the womb and children can be born with a cleft palate and spina bifida as well as neurodevelopmental disorders.

The medicine now carries warnings about use during pregnancy, but Susan Jamison, now 60, said she was not told about the possible consequences when she was expecting babies in 1990s.

A 2020 review recommended compensation to those affected, and a subsequent report in 2024 said there was an "urgent" need for redress for those harmed.

When Susan Jamison was diagnosed with epilepsy as a teenager in 1986, sodium valproate felt like a lifeline.

"It was fantastic - I could carry on going to college, going out with my friends. The seizures stopped," she told BBC News NI.

When she moved to England, got married and became pregnant she asked her doctor if her medication would be an issue.

"I was told 'absolutely not'. He said: 'If you need any more as you're having extra seizures take some more'.

However, Susan's children were born with symptoms of foetal valproate syndrome. Her daughter Anna, who also has epilepsy, has autism, ADHD and learning difficulties as well as pains in her bones.

It is thought thousands of children in the UK have been left with disabilities caused by valproate since the 1970s.

Of the estimated 20,000 people across the UK affected about 500 to 600 are in Northern Ireland.

"All the women feel guilty," said Susan.

"The government knew that it [sodium valproate] caused problems and it was still continued to be licensed for usage for pregnant women," she said.

In June, England's first patient safety commissioner, Dr Henrietta Hughes, wrote to then Prime Minister Sir Keir Starmer expressing disappointment that there had not been a "substantive response" from the government to the calls for redress. She has still not received a response to her 16 July deadline.

Back living in Northern Ireland, it was only after the 2020 publication of the Cumberlege Report, which concluded that the UK government should give compensation to those affected, that Susan says she got "closure".

But six years on from the initial report, families are waiting for redress.

"I'm angry. Parents are not getting any younger and we need to set out a care path for our children. It needs to be sorted quickly," Susan said.

"If I am no longer here Anna will have proper housing and medical care which she will need all her life," she added.

Anna, 32, is also angry on behalf of her mum.

"I have tried to convince her we don't hold any grudge. I am grateful to her - it's not her fault. They should have been more honest with her," she added.

Instructions for doctors - and patient leaflets - now say valproate should not be used during pregnancy unless there is no safer alternative and only after a careful discussion of the risks.

No woman or girl should stop taking sodium valproate without seeking medical advice.

The work of retired Belfast neurology consultant Dr Jim Morrow in monitoring the effects of the drug on pregnant women with epilepsy has been key to exposing the effects of sodium valproate.

He established the UK Epilepsy and Pregnancy Register in 1996 and said it is a "scandal" that the government had not taken any action on redress.

It was found that valproate use was causing about 10% of pregnancies to result in physical abnormalities and more than 30% had special educational needs, speech and learning difficulties.

Morrow said some women who want to start a family are faced with a difficult decision because some types of epilepsy "only respond to sodium valproate".

"Having seizures is awful. People can fall, they can injure themselves," he said.

He feels the onus should be on the UK government to help families.

"This drug has been around for about 50 years and the problems weren't recognised for 30-so years, with another 10 years before any recommendations were made, so the doctors weren't informed so they couldn't really inform the patients," he explained.

He said while a redress scheme is not a devolved matter: "Northern Ireland were the leaders in exposing this scandal" so "why can't Northern Ireland take the lead and start a redress scheme independently?"

He said a redress scheme would be more than financial and also focus on providing carers, adaptions to the home and special educational needs.

Sinn Fein MLA Órlaithí Flynn has been contacted by families who want answers and action.

"The mothers I have been working with are carrying massive guilt and shame and pain and hurt as a result of something that was not their doing," said Flynn.

"What is crystal clear is that the families are not receiving the proper help and support that they need – they live with life long disabilities."

She also said NI's Department of Health must do more to "capture the data and numbers who have been harmed" and provide more support for families on a local level.

One family who reached out to Flynn was a mother and her 25 year-old daughter from west Belfast, who wish to remain anonymous.

The woman was prescribed sodium valproate in the 90s for seizures, and was taking it during two of her four pregnancies. The children born while she was taking sodium valproate have health issues, the others don't.

Her daughter was born early with a cleft palate, facial symptoms of sodium valproate syndrome as well as ADHD.

The women said families need a proper apology and "kids need to get the treatment that they need".

"You're trying to fix something that could have been prevented. Parents are left to pick up the pieces," she said.

"I can remember when she was born, my mum saying: 'That's those tablets'."

She described the early years of her daughter's life as "constant running" to hospital for operations but said she was made to feel "overprotective," when she raised issues.

Her daughter said she also still awaiting some medical treatment.

The Belfast Trust has said she "has a complex condition which means she has undergone several surgeries within Belfast Trust, and remains an outpatient in our care with her next appointment later this month".

Alison Fuller from Epilepsy Action said it is a "scandal" on par with infected blood and Post Office Horizon scandals.

"It wasn't until 2018 that it was unlicensed for use in pregnancy," she said.

"Families were not given the right information at the time."

She said families that the charity works with "are really struggling", and as children get older their needs get more complex.

"These families are crying out for help and to be seen and heard," she said.

Fuller said the charity is "disillusioned and frustrated," by the lack of response from the government to the Hughes report and urged any family with concerns to get in touch.

In May in answer to an Assembly question on the matter Northern Ireland's Department of Health said it was "regrettable" that a UK government decision on redress has still not been taken.

The health minister said victims "have had to wait far too long for a response", adding that he had pressed the then minister responsible for patient safety for movement on financial redress.

Mike Nesbitt said patients can access care and support based on clinical need through normal referral processes but he also recognised that further enhancements can be made to improve the care and support for individuals and families affected by a range of medicines taken during pregnancy.

NI's Department of Health has been contacted for a response.

The UK government has been contacted for a response.