Stella was 19 when she discovered she has foetal alcohol syndrome. “I found out in a horrible way, to be honest,” she says. She had taken her boyfriend to meet her father for the first time. Stella and her father had only limited contact, but her boyfriend hoped that he might help to explain some of Stella’s erratic, unreliable behaviour, and asked him upfront, “What’s wrong with your daughter? Why is she the way she is?”

“That’s when he paused, and he breathed, and he said it,” Stella says, still distressed at the memory of the conversation. “I was shocked. I asked, ‘Why wasn’t I told about it?’ He said he didn’t want me to dwell on something like that.

“My heart felt like it was jumping out of my mouth,” the 25-year-old remembers. “It killed me inside. Why have I lived all my life without knowing about it? It was a really bad time.”

Stella and I arrange to meet at her friend’s flat, and she arrives two hours late, hugely apologetic that she forgot all about it. She tells me she has struggled with timekeeping all her life. Articulate and thoughtful, she gives no real indication of having the disorder, aside from occasionally trailing off and losing her train of thought, asking, “What was I just saying there?” But she describes how catastrophically her life has been affected by the legacy of her mother’s drinking.

Foetal alcohol spectrum disorder (FASD) is the umbrella term for a range of birth defects associated with drinking in pregnancy. At the extreme end of the spectrum is foetal alcohol syndrome (FAS), a very rare condition caused by heavy or frequent alcohol consumption during pregnancy. FAS can cause a range of physical and cognitive problems. Some babies are born with facial abnormalities – thin upper lips, a flatter area between the lip and the nose, smaller eyes. Babies with both FAS and FASD are often smaller than other babies, and typically remain small throughout their lives. Some children may have no physical signs of the condition, but a range of developmental disorders – attention deficit, hyperactivity, poor coordination, language problems and learning disabilities. There is no reliable research on how common it is in the UK; some doctors believe FAS may affect one child in 1,000, and FASD between three and four times more. Adolescents and adults with FASD are overrepresented in the criminal justice system.

Stella spent much of her childhood in care, until she was 11, when her aunt took her in. Her mother died before her father broke the news, so she was never able to ask her about the past. Instead, she went to her GP, who looked at her files. “She said, ‘Yes, you do have this. Your mum was a heavy alcoholic.’” The GP printed out a document that said Stella had been diagnosed in 1993, aged three.

She took to researching the condition online. “It described things that made sense,” Stella says. “All my life, things had been happening to me, and it was suddenly explained. I’m not good with organisation, bills, day-to-day things. I can’t read and write. I’m not good at maths. I’d had these problems and I didn’t know why.” She has never had a job and wonders if she would manage. “I want everything to be simple. If it isn’t, my head feels scattered. I can’t focus. I can’t concentrate.”

***

At the end of last year, a controversial British court case hinged on whether a woman should be considered to be committing a crime if she drinks heavily during pregnancy. The case looked at whether the council caring for a seven-year-old girl with FAS was entitled to extract compensation from the Criminal Injuries Compensation Authority on her behalf. Lawyers examined the legal rights of an unborn child and asked whether alcohol consumption by the mother constituted the crime of poisoning.

The court of appeal ruled in December that the mother, who inflicted lifelong damage on her child by consuming large quantities of alcohol while pregnant, had not committed a criminal offence, and that her daughter was not, therefore, entitled to compensation. To date, no woman has been prosecuted under English law for harm she caused to her child in utero, but hundreds of women in the US have been imprisoned for drinking or taking drugs during pregnancy. And the legal battle here is far from over; lawyers representing the seven-year-old (who remains anonymous), and around 80 other children affected by FASD, are considering whether to pursue the case in the supreme court.

We’re not talking here about the effects of drinking a couple of glasses of wine at a friend’s wedding. The test case involved a woman who drank, by her own account, half a bottle of vodka and several cans of strong lager daily. But there is a growing sense among politicians and doctors that drinking during pregnancy is an issue that is not taken seriously enough. In Westminster, politicians have been debating whether official guidance over drinking in pregnancy is sufficiently clear. The Royal College of Obstetricians & Gynaecologists recently hardened its advice, saying women should avoid alcohol altogether in the first three months of pregnancy. NHS Choices, the government’s health advisory website, states that the UK chief medical officers’ advice is that abstinence is best, but adds, “If they do choose to drink, to minimise the risk to the baby, we recommend they should not drink more than one or two units once or twice a week and should not get drunk.” The chief medical officer for England is currently reviewing these guidelines.

Lost in all these discussions, however, have been the voices of adults affected by the condition, and those of mothers who have given birth to, and brought up, children with FAS. Among them, there is little appetite for further stigmatising of mothers. But there is agreement that pregnant women need clearer guidance and help, and that affected children need much more support.

Stella thinks she can identify in herself the facial characteristics that sometimes go with the condition (although they are not discernible to others, or me; she looks lovely). But, she says, “It is more mental. I am not capable of doing things. I was hyperactive when I was young. I never listened. I got picked on a lot at primary school; there was a lot of spiteful behaviour. I went to a special needs secondary school – that was better – but I should have had more support as a teenager.”

Although she finds it painful to talk about her childhood, Stella is determined to raise awareness of the syndrome. Recently, she has spoken at conferences arranged by support group the National Organisation for Foetal Alcohol Syndrome (Nofas), which has helped find a charity that provides regular support sessions, allowing her to live independently: “They help with finances and forms, things I am not capable of doing.”

Stella feels ambivalent towards her mother. “I feel some sort of hate and some sort of love,” she says. “I want to be able to go back and ask her questions – questions that will never be answered, because she is dead.” She wishes she had known earlier what the cause of her difficulties was, but she is clear that moving towards prosecuting women is not the right answer. “What difference will it make? She hasn’t committed a crime – she has an issue with alcohol.”

***

Laura has two teenage sons who were diagnosed with FASD a few years ago. She was pregnant with them in the 1990s, when – as she remembers it – there was real ambiguity about the levels of safe alcohol consumption for pregnant women, and she doesn’t remember being confronted by her midwives. Her partner was violent, she was beaten during the first pregnancy, and had panic attacks. “I was a social drinker, but increasingly I was using alcohol to cope. I went to all my appointments, they were aware that I drank – I was drinking beer, mainly, Holsten Pils. The midwife knew I was a four-times-a-week drinker.”

Laura’s first pregnancy progressed without any problems, and she “gave birth to a beautiful child”. Over the next few years, her relationship with the child’s father deteriorated, she lost her job and her home, and began to drink more and more. By the time she was pregnant with her second son, she was an alcoholic. “I had to go into hospital early, and by that time I was drinking 24/7 – mainly beer, a few cans a day, not massive binges. But nobody mentioned the drink: not the doctors, not the midwives. They didn’t advise about the risk of FAS. I had no suspicion that my child could be affected.”

Her second son was born a few weeks prematurely. Neither child had any of the physical features of FAS, and both went to mainstream schools, but their behaviour was very challenging. Gradually, as her life became more stable and she stopped drinking, Laura began to be aware that both her sons had serious issues.

Her younger son had learning difficulties and was diagnosed with ADHD. She had taken him to a hospital appointment and was carrying his notes from one doctor to another, when she spotted a note on his file that said: “Possible FAS.”

“I was devastated,” Laura says. “I knew in my gut that’s what it was.” Both children were later given a formal diagnosis at Great Ormond Street hospital.

Laura is dynamic and energetic; she has a good job now, as she did when she was first pregnant. We meet in a cafe near Hampstead Heath in London, at teatime, and it soon becomes obvious from the discreet twitching of other customers’ heads that her calm, powerful account of this rarely discussed subject has them all engrossed.

She knows people will blame her for her actions, and is very conscious of her own responsibility for her sons’ difficulties, but she is adamant that mothers need support, not criminalisation. “There is sometimes a witch-hunt to go after the mothers, but I am living with my guilt every day. That’s a real life sentence.” She has coped by devoting herself to making sure her sons get all the support they need, and by volunteering to help other mothers who also drank during pregnancy, through the European Birth Mother Network.

“I need to make sure this doesn’t happen to other people,” Laura says. “Women shouldn’t be prosecuted – they should be given alcohol-rehabilitation services. No woman I have ever met ever wants to harm her baby. This is an illness, not a choice. But people need to be told if they do drink, what will happen. There aren’t enough clear guidelines. I think midwives are scared sometimes to confront women.”

Although Laura drank more during her second pregnancy, she thinks her older child has struggled more with the consequences of his condition. “My younger son got support earlier. For the older one, it was harder – we didn’t understand, so he was always being told, ‘You are awful – why do you behave like that?’ He had an organic brain injury; he couldn’t read people’s facial expressions, he had problems with social skills, he was overwhelmed by noise. We didn’t understand that.”

***

Twenty years on from Laura’s pregnancy, the medical guidance is still confusing and contradictory. There are those, such as paediatrician and former children’s commissioner Sir Al Aynsley-Green, who argue for total abstinence. “Exposure to alcohol before birth is the most important preventable cause of brain damage in children, that could affect up to one in every 100 babies in England,” he says. “Its effects range from devastating physical and learning disabilities to subtle damage causing bad behaviour, violence and criminality.”

At the other end of the spectrum are groups such as the British Pregnancy Advisory Service, who point out that most women are already very sensible and warn against demonising their behaviour. According to BPAS, the main consequence of publishing excessively frightening advice is that women come to its clinics unnecessarily considering abortions, concerned about damage they might have inflicted on their foetus before they knew they were pregnant.

In the submission made by BPAS to the court case last year, it was pointed out that there are a wide variety of substances that may cause damage to an unborn baby, from food to plastics and household products. Lawyers in the case questioned whether demanding criminal injuries compensation for alcohol poisoning could mean by extension that “a pregnant mother who eats unpasteurised cheese or a soft-boiled egg, knowing that there is a risk of harm to the foetus might also find herself accused of a crime”.

At the frontline, Jo Austin, a midwife who works with vulnerable mothers in London, says it’s easier to get women to talk about heroin or crack addiction than it is to get them to confront their drinking during pregnancy. “We have lots of leaflets for women who take heroin and crack, who are quite a small minority of the women we see. But alcohol is more socially acceptable and it is legal. A large proportion of society drinks, at least socially. Our feeling is that it is a problem that women don’t admit to, perhaps because of stigma, guilt or fear of social services involvement.”

Austin says most of the pregnant women she sees are better informed about the risks of smoking during pregnancy. “There has been so much health promotion done on smoking, but the effects of alcohol are potentially much worse.”

Gail Priddey, CEO of Haringey Advisory Group on Alcohol, which supports families affected by alcohol, says she is currently writing an advice leaflet for midwives that attempts to navigate a line between being straightforward with the facts without “scaring pregnant women witless”. “It is such an emotive and difficult subject,” Priddey says. “You say, ‘Best not to drink when you’re pregnant,’ then someone says, ‘Well, actually, I’ve been drinking heavily. I didn’t realise.’ Where do you go from there? Do you say, ‘You may have done some damage’? It’s an area professionals don’t want to touch.”

The flipside of this is that children with FAS and FASD are not diagnosed early enough, and often do not receive the help they need. Raja Mukherjee, a neurodevelopmental psychiatrist and lead clinician at the national FASD clinic, says awareness of the condition has risen dramatically in the 12 years he has worked in the area, but diagnosis remains complicated. He believes doctors are often unwilling to label a child as suffering from FASD because it is “too stigmatising”. “It is easier to say, ‘You have ADHD,’” he says.

Yet Mukherjee is uncomfortable about the fight for criminal injuries compensation for children, because “criminalisation just pushes it underground. We struggle already with people who tell us, ‘I didn’t drink at all in pregnancy’ – yet they were an alcoholic before and an alcoholic afterwards.”

Neil Sugarman, the lawyer for the unidentified local authority in the north-west that took the legal action, said they were motivated by a quest to get adequate funding for the girl’s care. “This wasn’t about trying to get women prosecuted,” he says. “My job as a lawyer is to look at the interests of terribly badly impaired children. We have a state scheme that if you can show you are a victim of a crime, you are entitled to compensation.

“The Criminal Injuries Compensation Scheme has never required someone to be prosecuted – no one needs to be taken to court, charged, sentenced or convicted. All it requires is that a judge has to be satisfied that what happened can be recognised as a crime. It is very difficult for young people to get access to their therapeutic needs on the NHS – the occupational therapy and speech therapy they need is not always readily available. The true benefit of compensation would be to open up access to private treatment for these children and enhance their lives.”

***

Kay Collins, 61, would also like to see more funding for children with FASD, but not if it means prosecuting their mothers. Ten years ago, she adopted three children, two of whom have the condition. She knew them before she adopted them, because they lived in a flat upstairs in the west London mansion block where they still live.

“We’d meet on the stairs and say hello, and I got to know them – they were lovely kids. I didn’t know their mother was an alcoholic. It was only as time went on, I realised. She was somebody who needed help, not someone to abuse or to judge.

“You saw that she loved the kids, but she couldn’t manage. She was in her 20s, the children’s father was there on and off. She never harmed the kids in any way. She loved them – she just didn’t know how to care for them.”

Eventually, the children were taken into care. Collins, who was working as a teaching assistant and had four, much older children of her own, decided to adopt them – a girl of 17 months and boys of four and five. She knew nothing about FASD until she was called by a paediatrician who was helping to prepare the adoption papers. She was told the two younger children might have learning disabilities and was asked how she would cope. “I said, ‘If I knew that now, I would be a genius. I can only know when I am dealing with it.’ It didn’t put me off. I knew that the children just needed a lot of love and attention.”

Now that she knows more about the condition, she can see some of the facial characteristics of FASD in pictures of the youngest as a baby. These have become less noticeable as she has grown up, but her cognitive problems have become more evident over time. “When they were about seven, it was clear things were not happening as with normal children. They both didn’t speak very well for a long time, they didn’t understand a lot of things. The younger one still doesn’t. Her brother understands better, but his behaviour is worse. If you try to correct him, he gets very angry.”

Collins is fighting for the youngest, now 12, to be given a place in a special needs school. “She has language difficulties. If things are not explained to her at a slower pace, she is not going to understand them. At the moment, I’m at loggerheads with the local authority and in a tribunal because they don’t think that’s necessary. They don’t want to pay for it. It’s down to cost.”

Collins thinks her 12-year-old daughter won’t take GCSEs and knows that, long-term, life will be complicated for her. “She will live independently, but she will need a lot of support – she is quite vulnerable because she thinks everyone is her friend.” But she doesn’t like the idea of fighting for compensation through the Criminal Injuries Compensation Scheme. “It would be nice to have the money; we could use it to get them educated in the right environment,” she says, but she is uncomfortable with the idea that this might be a step in the direction of criminalising troubled women. “Mothers who drink when pregnant need more support and understanding. No one sits down and just starts drinking. There has to be something that triggered it.”

Meanwhile, she just tries to help her children understand. “My daughter keeps asking, ‘Is there something wrong with me?’ I say, ‘Yes, you have foetal alcohol spectrum disorder.’” The middle child is angry about his mother’s role in his condition. “He says, ‘I hate my mum’, but I try to explain: ‘She couldn’t look after you. It doesn’t mean she didn’t love you. She was never a bad mum.’”

• Some names have been changed. To contact Nofas UK, call 020-8458 5951 or go to nofas-uk.org.