{"id":10962,"date":"2016-08-15T17:32:52","date_gmt":"2016-08-15T17:32:52","guid":{"rendered":"https:\/\/drugprevent.org.uk\/ppp\/?p=10962"},"modified":"2017-10-19T09:58:30","modified_gmt":"2017-10-19T09:58:30","slug":"my-mother-the-alcoholic-living-with-foetal-alcohol-syndrome","status":"publish","type":"post","link":"https:\/\/drugprevent.org.uk\/ppp\/2016\/08\/my-mother-the-alcoholic-living-with-foetal-alcohol-syndrome\/","title":{"rendered":"My mother, the alcoholic: living with foetal alcohol syndrome"},"content":{"rendered":"

Should heavy drinking in pregnancy be a crime? A recent test case in the UK was thrown out, but in the US hundreds of women have been imprisoned. We meet women and children affected by foetal alcohol syndrome<\/span><\/p>\n

I\u2019d had problems all my life and I didn\u2019t know why,\u2019 says Stella, who found out at 19 that she has foetal alcohol syndrome.<\/span><\/p>\n

Stella was 19 when she discovered she has foetal alcohol syndrome. \u201cI found out in a horrible way, to be honest,\u201d 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\u2019s erratic, unreliable behaviour, and asked him upfront, \u201cWhat\u2019s wrong with your daughter? Why is she the way she is?\u201d<\/span><\/p>\n

\u201cThat\u2019s when he paused, and he breathed, and he said it,\u201d Stella says, still distressed at the memory of the conversation. \u201cI was shocked. I asked, \u2018Why wasn\u2019t I told about it?\u2019 He said he didn\u2019t want me to dwell on something like that.<\/span><\/p>\n

\u201cMy heart felt like it was jumping out of my mouth,\u201d the 25-year-old remembers. \u201cIt killed me inside. Why have I lived all my life without knowing about it? It was a really bad time.\u201d<\/span><\/p>\n

Stella and I arrange to meet at her friend\u2019s 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, \u201cWhat was I just saying there?\u201d But she describes how catastrophically her life has been affected by the legacy of her mother\u2019s drinking.<\/span><\/p>\n

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 \u2013 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\u00a0range of developmental disorders<\/span><\/a>\u00a0\u2013 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.<\/span><\/p>\n

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. \u201cShe said, \u2018Yes, you do have this. Your mum was a heavy alcoholic.\u2019\u201d The GP printed out a document that said Stella had been diagnosed in 1993, aged three.<\/span><\/p>\n

She took to researching the condition online. \u201cIt described things that made sense,\u201d Stella says. \u201cAll my life, things had been happening to me, and it was suddenly explained. I\u2019m not good with organisation, bills, day-to-day things. I can\u2019t read and write. I\u2019m not good at maths. I\u2019d had these problems and I didn\u2019t know why.\u201d She has never had a job and wonders if she would manage. \u201cI want everything to be simple. If it isn\u2019t, my head feels scattered. I can\u2019t focus. I can\u2019t concentrate.\u201d<\/span><\/p>\n

Women shouldn\u2019t be prosecuted \u2013 they should be given alcohol rehabilitation<\/span><\/p>\n

At the end of last year,\u00a0a controversial British court case hinged on whether a woman should be considered to be committing a crime if she drinks heavily during pregnancy<\/span><\/a>. 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.<\/span><\/p>\n

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,\u00a0had not committed a criminal offence<\/span><\/a>, 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\u00a0hundreds of women in the US have been imprisoned for drinking or taking drugs during pregnancy<\/span><\/a>. 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.<\/span><\/p>\n

We\u2019re not talking here about the effects of drinking a couple of glasses of wine at a friend\u2019s 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.\u00a0The Royal College of Obstetricians & Gynaecologists<\/span><\/a>\u00a0recently hardened its advice, saying women should avoid alcohol altogether in the first three months of pregnancy.\u00a0NHS Choices<\/span><\/a>, the government\u2019s health advisory website, states that the UK chief medical officers\u2019 advice is that\u00a0abstinence is best<\/span><\/a>, but adds, \u201cIf 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.\u201d The chief medical officer for England is currently reviewing these guidelines.<\/span><\/p>\n

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.<\/span><\/p>\n

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, \u201cIt 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 \u2013 that was better \u2013 but I should have had more support as a teenager.\u201d<\/span><\/p>\n

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<\/span><\/a>), which has helped find a charity that provides regular support sessions, allowing her to live independently: \u201cThey help with finances and forms, things I am not capable of doing.\u201d<\/span><\/p>\n

Stella feels ambivalent towards her mother. \u201cI feel some sort of hate and some sort of love,\u201d she says. \u201cI want to be able to go back and ask her questions \u2013 questions that will never be answered, because she is dead.\u201d 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. \u201cWhat difference will it make? She hasn\u2019t committed a crime \u2013 she has an issue with alcohol.\u201d<\/span><\/p>\n

No woman I have met ever wants to harm her baby. This is an illness, not a choice<\/span><\/p>\n

\u00a0Laura has two sons with FASD: \u2018I need to make sure this doesn\u2019t happen to other people.\u2019 Photograph: Sophia Spring for the Guardian<\/span><\/p>\n

Laura has two teenage sons who were diagnosed with FASD a few years ago. She was pregnant with them in the 1990s, when \u2013 as she remembers it \u2013 there was real ambiguity about the levels of safe alcohol consumption for pregnant women, and she doesn\u2019t remember being confronted by her midwives. Her partner was violent, she was beaten during the first pregnancy, and had panic attacks. \u201cI was a social drinker, but increasingly I was using alcohol to cope. I went to all my appointments, they were aware that I drank \u2013 I was drinking beer, mainly, Holsten Pils. The midwife knew I was a four-times-a-week drinker.\u201d<\/span><\/p>\n

Laura\u2019s first pregnancy progressed without any problems, and she \u201cgave birth to a beautiful child\u201d. Over the next few years, her relationship with the child\u2019s 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. \u201cI had to go into hospital early, and by that time I was drinking 24\/7 \u2013 mainly beer, a few cans a day, not massive binges. But nobody mentioned the drink: not the doctors, not the midwives. They didn\u2019t advise about the risk of FAS. I had no suspicion that my child could be affected.\u201d<\/span><\/p>\n

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.<\/span><\/p>\n

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: \u201cPossible FAS.\u201d<\/span><\/p>\n

\u201cI was devastated,\u201d Laura says. \u201cI knew in my gut that\u2019s what it was.\u201d Both children were later given a formal diagnosis at Great Ormond Street hospital.<\/span><\/p>\n

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\u2019 heads that her calm, powerful account of this rarely discussed subject has them all engrossed.<\/span><\/p>\n

She knows people will blame her for her actions, and is very conscious of her own responsibility for her sons\u2019 difficulties, but she is adamant that mothers need support, not criminalisation. \u201cThere is sometimes a witch-hunt to go after the mothers, but I am living with my guilt every day. That\u2019s a real life sentence.\u201d 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\u00a0European Birth Mother Network<\/span><\/a>.<\/span><\/p>\n

\u201cI need to make sure this doesn\u2019t happen to other people,\u201d Laura says. \u201cWomen shouldn\u2019t be prosecuted \u2013 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\u2019t enough clear guidelines. I think midwives are scared sometimes to confront women.\u201d<\/span><\/p>\n

Although Laura drank more during her second pregnancy, she thinks her older child has struggled more with the consequences of his condition. \u201cMy younger son got support earlier. For the older one, it was harder \u2013 we didn\u2019t understand, so he was always being told, \u2018You are awful \u2013 why do you behave like that?\u2019 He had an organic brain injury; he couldn\u2019t read people\u2019s facial expressions, he had problems with social skills, he was overwhelmed by noise. We didn\u2019t understand that.\u201d<\/span><\/p>\n

\u201cThere is a witch-hunt to go after the mothers, but I am living with my guilt every day. That\u2019s a real life sentence\u201d<\/span><\/p>\n

Twenty years on from Laura\u2019s pregnancy, the medical guidance is still confusing and contradictory. There are those, such as paediatrician and former children\u2019s commissioner\u00a0Sir Al Aynsley-Green<\/span><\/a>, who argue for total abstinence. \u201cExposure 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,\u201d he says. \u201cIts effects range from devastating physical and learning disabilities to subtle damage causing bad behaviour, violence and criminality.\u201d<\/span><\/p>\n

At the other end of the spectrum are groups such as the\u00a0British Pregnancy Advisory Service<\/span><\/a>, 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.<\/span><\/p>\n

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 \u201ca 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\u201d.<\/span><\/p>\n

At the frontline, Jo Austin, a midwife who works with vulnerable mothers in London, says it\u2019s easier to get women to talk about heroin or crack addiction than it is to get them to confront their drinking during pregnancy. \u201cWe 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\u2019t admit to, perhaps because of stigma, guilt or fear of social services involvement.\u201d<\/span><\/p>\n

Austin says most of the pregnant women she sees are better informed about the risks of smoking during pregnancy. \u201cThere has been so much health promotion done on smoking, but the effects of alcohol are potentially much worse.\u201d<\/span><\/p>\n

Gail Priddey, CEO of\u00a0Haringey Advisory Group on Alcohol<\/span><\/a>, 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 \u201cscaring pregnant women witless\u201d. \u201cIt is such an emotive and difficult subject,\u201d Priddey says. \u201cYou say, \u2018Best not to drink when you\u2019re pregnant,\u2019 then someone says, \u2018Well, actually, I\u2019ve been drinking heavily. I didn\u2019t realise.\u2019 Where do you go from there? Do you say, \u2018You may have done some damage\u2019? It\u2019s an area professionals don\u2019t want to touch.\u201d<\/span><\/p>\n

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.\u00a0Raja Mukherjee<\/span><\/a>, 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 \u201ctoo stigmatising\u201d. \u201cIt is easier to say, \u2018You have ADHD,\u2019\u201d he says.<\/span><\/p>\n

Yet Mukherjee is uncomfortable about the fight for criminal injuries compensation for children, because \u201ccriminalisation just pushes it underground. We struggle already with people who tell us, \u2018I didn\u2019t drink at all in pregnancy\u2019 \u2013 yet they were an alcoholic before and an alcoholic afterwards.\u201d<\/span><\/p>\n

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\u2019s care. \u201cThis wasn\u2019t about trying to get women prosecuted,\u201d he says. \u201cMy 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.<\/span><\/p>\n

\u201cThe Criminal Injuries Compensation Scheme has never required someone to be prosecuted \u2013 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 \u2013 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.\u201d<\/span><\/p>\n

I didn\u2019t know the kids’ mother was an alcoholic. She loved them, but couldn\u2019t cope. It didn\u2019t put me off adopting them<\/span><\/p>\n

\u00a0Kay Collins adopted three children, two of whom have foetal alcohol spectrum disorder. Photograph: Sophia Spring for the Guardian<\/span><\/p>\n

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.<\/span><\/p>\n

\u201cWe\u2019d meet on the stairs and say hello, and I got to know them \u2013 they were lovely kids. I didn\u2019t 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.<\/span><\/p>\n

\u201cYou saw that she loved the kids, but she couldn\u2019t manage. She was in her 20s, the children\u2019s father was there on and off. She never harmed the kids in any way. She loved them \u2013 she just didn\u2019t know how to care for them.\u201d<\/span><\/p>\n

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 \u2013 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. \u201cI said, \u2018If I knew that now, I would be a genius. I can only know when I am dealing with it.\u2019 It didn\u2019t put me off. I knew that the children just needed a lot of love and attention.\u201d<\/span><\/p>\n

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. \u201cWhen they were about seven, it was clear things were not happening as with normal children. They both didn\u2019t speak very well for a long time, they didn\u2019t understand a lot of things. The younger one still doesn\u2019t. Her brother understands better, but his behaviour is worse. If you try to correct him, he gets very angry.\u201d<\/span><\/p>\n

Collins is fighting for the youngest, now 12, to be given a place in a special needs school. \u201cShe 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\u2019m at loggerheads with the local authority and in a tribunal because they don\u2019t think that\u2019s necessary. They don\u2019t want to pay for it. It\u2019s down to cost.\u201d<\/span><\/p>\n

Collins thinks her 12-year-old daughter won\u2019t take GCSEs and knows that, long-term, life will be complicated for her. \u201cShe will live independently, but she will need a lot of support \u2013 she is quite vulnerable because she thinks everyone is her friend.\u201d But she doesn\u2019t like the idea of fighting for compensation through the Criminal Injuries Compensation Scheme. \u201cIt would be nice to have the money; we could use it to get them educated in the right environment,\u201d she says, but she is uncomfortable with the idea that this might be a step in the direction of criminalising troubled women. \u201cMothers 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.\u201d<\/span><\/p>\n

Meanwhile, she just tries to help her children understand. \u201cMy daughter keeps asking, \u2018Is there something wrong with me?\u2019 I say, \u2018Yes, you have foetal alcohol spectrum disorder.\u2019\u201d The middle child is angry about his mother\u2019s role in his condition. \u201cHe says, \u2018I hate my mum\u2019, but I try to explain: \u2018She couldn\u2019t look after you. It doesn\u2019t mean she didn\u2019t love you. She was never a bad mum.\u2019\u201d<\/span><\/p>\n

\u2022\u00a0Some names have been changed. To contact Nofas UK, call 020-8458 5951 or go to\u00a0nofas-uk.org<\/span><\/a>.<\/span><\/p>\n

Source: http:\/\/gu.com\/p\/475mq<\/a> April 2015 http:\/\/www.theguardian.com\/society\/2015\/apr\/04<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

Should heavy drinking in pregnancy be a crime? A recent test case in the UK was thrown out, but in the US hundreds of women have been imprisoned. We meet women and children affected by foetal alcohol syndrome I\u2019d had problems all my life and I didn\u2019t know why,\u2019 says Stella, who found out at […]<\/p>\n","protected":false},"author":4,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[29,41,12],"tags":[],"class_list":["post-10962","post","type-post","status-publish","format-standard","hentry","category-alcohol","category-drug-use-effects-on-foetus","category-legal-sector"],"_links":{"self":[{"href":"https:\/\/drugprevent.org.uk\/ppp\/wp-json\/wp\/v2\/posts\/10962","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/drugprevent.org.uk\/ppp\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/drugprevent.org.uk\/ppp\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/drugprevent.org.uk\/ppp\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/drugprevent.org.uk\/ppp\/wp-json\/wp\/v2\/comments?post=10962"}],"version-history":[{"count":0,"href":"https:\/\/drugprevent.org.uk\/ppp\/wp-json\/wp\/v2\/posts\/10962\/revisions"}],"wp:attachment":[{"href":"https:\/\/drugprevent.org.uk\/ppp\/wp-json\/wp\/v2\/media?parent=10962"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/drugprevent.org.uk\/ppp\/wp-json\/wp\/v2\/categories?post=10962"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/drugprevent.org.uk\/ppp\/wp-json\/wp\/v2\/tags?post=10962"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}