When Sarah Hayes’ son Alex was born 24 years ago, she wasn’t just happy – she was euphoric.

“I couldn’t believe Alex was mine. Even after 30 hours of labour, I was full of energy,” she says. “I was so elated, I couldn’t switch off and sleep.”

That lack of sleep lasted six nights straight. In the middle of the night, she would write poems. “It was so out of character,” she says.

When back home, Hayes, now 49, believed she saw herself on TV. It was a news story about a woman who had won the lottery and hadn’t known. It showed Sarah and her family. She excitedly called up to her mum, who was visiting.

“I said, ‘Take a deep breath, you’re in for a shock’.” Hayes says her mum looked at her, then the TV, then went upstairs to get Hayes’s husband. “It was then,” Hayes says, “I knew something was really wrong.”

Further delusions followed. She was admitted into the general psychiatric ward, and her baby was removed from her. It was one of the scariest weeks of her life.

“I thought the staff were trying to kill me. The first night, I thought I’d died.”

Hayes was suffering from a severe psychiatric disorder called postpartum psychosis. It affects one in 600 mothers and is slightly more common with the first born. Fifty per cent of mothers experiencing it will have no history of mental ill-health. Experts are divided about what causes it.

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Patients experience manic episodes that cause hallucinations and delusions extremely detached from reality. Delusions of divine superpowers are common. Once reality sets back in, a deep depression often follows.

Today, a ripple of understanding has emerged following a storyline on British soap opera EastEnders that features Stacey Branning and, recently, singer Adele revealing her best friend had it.

But very little is known about the grown-up children of postpartum psychosis mothers and those women who, through their disorder, were either physically or emotionally absent during what experts say is the most crucial bonding time in the child’s life. This, combined with the taboo of the disorder, has often left women now aged over 50 to deal alone with lifelong feelings of guilt and shame. Some will go on to develop bipolar disorder.

Sarah Hayes with Alex at his graduation in Swansea in 2017



Sarah Hayes with Alex at his graduation in Swansea in 2017.

Terri Smith, the chief executive of Perinatal Anxiety and Depression Australia (Panda), says: “It’s disappointing there’s still little known about postpartum psychosis. It’s such a dangerous illness and, if untreated, the risks are great.” Smith’s charity runs a helpline often called by “distressed dads, not knowing what’s going on or how to cope”.

Treatment includes antipsychotic medication, therapy, and, in rare cases, electroconvulsive therapy.

Even less was known 24 years ago when Hayes was alone, trembling and paranoid, without her newborn. “I just needed somebody to say you’ve got a postnatal illness, you will recover. But the nurses didn’t have a clue. They’d never heard of it.” Hayes and her husband, both registered nurses, had not heard of it either, adding to the shock.

Hayes’s mother cared for Alex while she recovered, which led to a strong bond forming between them.

For Hayes, this brings conflicting emotions: “I’m so grateful for her support. But I found it difficult. Because I wasn’t around in those early days, I think mum sees Alex as her child sometimes.”

Some of this comes down to classic attachment theory. Jenny Hallam, senior lecturer in psychology at the University of Derby, says: “Research suggests adults who had secure attachments as children go on to have healthier relationships and better self worth. This piles pressure on women to maintain a close relationship with their child.”

Experts stress the importance of mother and baby units in hospitals, so they aren’t separated during treatment.

Carolyn Scott with her daughter Nyna Giles



Carolyn Scott with her daughter Nyna Giles.

Australia is considered a world leader in this area, says Smith, but, even there, treatment can be a postcode lottery. Victoria has six units but New South Wales has none.

Anne Buist, professor of perinatal psychiatry at the University of Melbourne, has run one of those six mother and baby units for 30 years. “If separated, the baby will attach to the primary caregiver,” she says. “That can be difficult for mum from a psychological point of view, if the baby is preferring grandma. The sooner we can get mum well for that essential year of mother/baby bonding, the better.”

Buist points out that disorganised attachment can occur and lead to behavioural problems later if the mother’s health isn’t prioritised along with the child’s.

“We need to start asking how the mum is doing. Not just the child,” she adds.

For Nyna Giles’s mother, that question came too late.

Before Giles was born, Carolyn Scott was a model, socialising in high society – she was Grace Kelly’s bridesmaid. But after giving birth to Nyna, things were never the same.

Scott became detached from reality. She removed Giles from school and isolated herself, ashamed of the symptoms of her illness, which she hid to the friends who occasionally called in. Later in life, she deteriorated so far, she became homeless.

Giles admits she used to feel “ashamed” of her mother but that embarrassment has given way to pride: “I feel compassion now. I firmly believe that year after I was born, if she’d been treated then, she could’ve recovered. Really my birth was the fork in the road – a path she went down and never recovered from.”

That path also became the end of the road for Iain Cunningham’s mother, Irene. Now 43, up until very recently all Iain knew about his mother was that she died when he was three, and had been in a coma.

Making the recent film Irene’s Ghost to piece together a jigsaw created by stigma and silence, Cunningham discovered his mother had died in a psychiatric hospital where she had been sedated the night before for being “noisy and manic” – a sea-change from the quiet Irene all her friends knew. The cardiac arrest she died from – aged 24, with no family history of heart disease – was probably related to the high doses of antipsychotics she was on, and the extreme anxiety she was experiencing.

Irene with Iain Cunningham in his pushchair



Irene with Iain Cunningham, who made a film about her illness, Irene’s Ghost. Photograph: Supplied

Through the film, Cunningham learns that his father’s vicarious trauma and distress over the shocking change in Irene was the reason her postpartum psychosis was never even verbalised until recently: “A series of euphemisms were used which avoid the bare facts of mental ill-health. A coma, trouble with her nerves, even depression or baby blues are sometimes used to play down the severity of something which is in fact an extreme psychiatric and medical emergency,” he says.

The film’s title comes from Irene’s own words upon giving birth to Cunningham: “I’m not Irene you know. I’m her ghost.” She developed symptoms of talking incessantly, not sleeping, hallucinating about rats and spiders, and believing her newborn son was God, that his head was expanding and that he was growing teeth. She would write nonsensical notes on paper and the walls. This was followed by periods of catatonia, mania, anxiety and deep depression.

Cunningham now does some work with the UK charity Action on Postpartum Psychosis. He describes how far the stigma spreads: “Even people working or volunteering for that charity often haven’t spoken to their children about the psychosis they had when they were born. They want to, but don’t know how to start it.” Its CEO, Dr Jesica Heron, says: “The secrecy and shame that has surrounded postpartum psychosis for many years, can damage families and relationships – and that open discussion at the right time, in the right way, can help to build relationships and understanding.”

A poster for the movie Irene’s Ghost



A poster for the movie Irene’s Ghost. Photograph: Supplied

There’s a silver lining in this story. In the film, Cunningham’s childhood neighbours, who stepped in to help, say he was “ruined” – a midlands colloquialism meaning spoilt. Like Hayes’ son Alex, his mother’s illness ultimately meant he was surrounded with more protective love, not less. Dr Heron says there are some studies suggesting that the children of mothers with postpartum psychosis might even perform better than others on measures of things such as expressive language.

The tragedy of the disorder can make families incredibly close knit. The first time Californian woman Angela Burling, 63, went through it with her daughter Allyson in 1979, everyone was stumped. The former nurse went from soft-spoken and even-keeled to singing at the top of her lungs, turning on every tap in in the house, and having delusions that she was the bride of Christ, her husband was Christ himself and her daughter was the messenger of truth.

Ten days straight of zero sleep led to the psychosis. She tried to jump off a bridge to “save” her husband Geoff in the belief he’d follow her and be baptised.

Medical professionals thought it was a bout of schizophrenia, but when she became pregnant again, a midwife falsely told her it was unlikely to recur. “That advice changed my life,” she says. “It prevented me receiving the treatment that exists to prevent a recurrence.”

Upon giving birth to her second son, Michael, in 1982, Burling remembers everything being “rosy and fine” for nine months until one Monday, when the delusions suddenly returned. By Thursday, she was being charged with murder.

The same delusions had returned – that Geoff was Christ and she Christ’s wife. On Thursday morning, the delusions convinced her that her baby was the devil. “I even saw his face contort into the devil,” she says. Alone, terrified and experiencing psychosis, she begged God to tell her what to do. And then, “almost mechanically,” she drowned him in a bath.

Detectives wanted Burling tried for murder but her husband mentioned what happened when she had Allyson and instead she was put in a psychiatric ward. “Things got worse there,” she says. “I went catatonic and, as reality set in and I came down from my manic delusional state. I was left with unimaginable grief and repercussions that have stayed with me my whole life.”

Angela Burling, who ‘almost mechanically’ drowned her second son in the bath, with her daughter Allyson



Angela Burling, who ‘almost mechanically’ drowned her second son in the bath, with her daughter Allyson.

It was only then that a psychiatrist, an expert in women’s health sent by her defence attorney, diagnosed her with postpartum psychosis. “Amid all the heartbreak, it was almost a relief,” she says. “You have an explanation, a definable illness.”

Infanticide like this is extremely rare among postpartum psychosis patients, says Dr Magdalena Romanowicz, a child psychiatrist at Mayo Clinic. “The biggest worry is suicide,” she says. “It’s the leading cause of death of women with the disorder.”

Burling was released, given the treatment she had long needed and was found innocent of any crime. Four years later, after connecting with experts on the disorder to prevent a relapse, she received some news: she was pregnant again. “I was thrilled” she says. “I had another chance to prove I’m a great mum. Because I am a great mum.”

The moment Tommy came through the birth canal, Burling describes a veil of grief lifting: “I’d been grieving so deeply, couldn’t feel happiness or joy in my heart. He removed that burden, completed my joy and freed my spirit. He gave me my life back,” she says.

Her daughter Allyson, 39, says she, Tommy, 32, and their mum are now extremely close, describing her as a “fantastic mum”.

Burling feels like one of the lucky ones. She now uses her position on the board of Postpartum Support International to break down the taboo: “I was able to get therapy and treatment to heal me. I’ve been able to get my master’s, swim, hike, bike, re-marry, be a mum to my kids,” she says. “So many women didn’t get these opportunities – the stigma often meant they didn’t seek or receive treatment.”

Now that Allyson has a two-year old son, she has a new understanding of her mother’s disorder: “I always had admiration for her to have experienced that horror and the strength she has needed to get through that.”

She pauses to compose herself through tears, then says: “She’s the most courageous woman I know.”

Action on Postpartum Psychosis is working on a guide about “Being a parent after postpartum psychosis”, available later this year. www.app-network.org. Panda https://www.panda.org.au / Helpline: 1300 726 306. Postpartum Support International (USA) https://www.postpartum.net/ Helpline: 1-800-944 -4773. Samaritans UK: 116 123



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