Bipolar disorder Pendulum: stories and information Women and bipolar Bipolar and pregnancy: decision, decisions... Clare Dolman, trustee of Bipolar UK, reports on her new research on women, pregnancy and bipolar. If you're a women with bipolar and you're contemplating having a child, there's a lot to consider. We know from research that about 50% of women with bipolar are likely to have some sort of episode during pregnancy or postnatally. 20-25% of women with bipolar will experience postpartum psychosis (PP), which is more severe and requires emergency treatment usually a stay in hospital. It's important to recognise that there's a 75% chance you won't experience PP and if you're unlucky and do, PP usually responds very well to treatment and you can get back to being a great mum to your baby. When I experienced PP after the birth of my daughter, it was an advantage that I already had a diagnosis of bipolar. Both I and my husband knew within days of the birth that I needed psychiatric help. PP often goes unrecognised for a long time in women without a diagnosis, giving the condition more time to worsen. I had to go to hospital for five weeks and stop breastfeeding so I could restart lithium. I never lost the bond with my daughter and, once home, quickly re-established a routine of caring for her. For my second pregnancy, I did all I could to avoid anything similar happening so I consulted psychiatrists and arranged postnatal support. Two things determined a healthy birth and postnatal period: having contingency plans in case I needed help (which made me less anxious) and deciding not to breastfeed so I could take lithium straight after the birth. My husband could help with night feeds, allowing me to get my sleep (so important if you have bipolar, as we all know). Having been involved with Bipolar UK for ten years, I help Prof. Ian Jones (National Centre for Mental Health) to run 'Bipolar and Pregnancy' workshops, which made me realise how many other women and their partners were struggling with the decisions facing them around having children. Would their medication harm the baby? If they stopped medication, would their illness harm their baby? Should they stop their medication before getting pregnant or switch to something else? Does the type of birth make a difference? Should they breastfeed? How much support would they need? Should they have a Birth Plan? Was there a chance their baby could be taken away from them? Should they risk having a child at all - might the child inherit bipolar? So many questions but there's very little research about this subject. This is largely because of the difficulties of conducting research with pregnant women and the general lack of focus on bipolar. To find out what decisions mattered most to women and the factors that influenced them, I've been pursuing a PhD at the Institute of Psychiatry, Psychology and Neuroscience at King's College, London, entitled "Women with Bipolar Disorder and Pregnancy: Factors influencing their Decision-making regarding Treatment". I interviewed 21 women with Bipolar 1 (the risk of a postpartum episode is higher for Bipolar 1 than Bipolar 2) and another 50 women on Bipolar UK's eCommunity contributed their views. This is an opportunity to thank all those who helped with the study and to tell you some of the results. I'm currently also analysing health professionals' views and assessing the possibility of designing a decision aid on this subject to help more couples in the future. I've just published a paper on the views of women with bipolar (co-authored with Prof. Louise Howard and Prof. Ian Jones), which is available to read here. This was a qualitative study, which gathered and analysed the views given to provide a sense of the important themes, rather than describe statistics of how many people said what. Major themes that emerged were Centrality of Motherhood, Contextual Factors, Stigma, and Fear. The diagram below summarises these factors. As can be seen, women were frightened of many aspects of childbirth and some suffered stigma but the vast majority of women in this study still wanted to have children and none of the women who'd given birth had regretted the decision. Cultural factors were significant for some women, including a Nigerian-born woman who said her family were harassing her to have a child to improve her mental health, or the Pakistani woman who felt her family didn't understand because "in Asia they don't believe in mental illness". Many women felt the extra pressure of their biological clock, and the degree of support they felt they had was important; both from their partner and their wider family. "My Mum has been amazing...she actually did the night feeds and stayed on a camp bed in the front room... She's been a huge source of support." The level of support from services was a big factor for women, as this post on the eCommunity illustrates: “I was also visited by one of the nurses from my local MBU [Mother and Baby Unit] and it was explained what would happen if I had to be hospitalised. It really put my mind at rest to know - and to know that I would not be split up from my daughter if I got ill.” Some women were also worried about stigma they thought they'd encounter ('Anticipated Stigma') and several mentioned the role of the media in exacerbating society's stigma towards them: "It’s the very occasional person with severe postnatal depression who harms her child that’s in the media ...not the people who’ve managed... It frustrates me the way that bipolar is depicted.” Women also feared stigma from health professionals and felt that some doctors were deliberately unhelpful because they didn't approve of them having children. One interviewee said, "It's almost like 'We shouldn't let the mad people have children'". Several women said how upset they were by the attitude of some maternity staff because they couldn't breastfeed. One Irish woman said: "I detested staying [on the postnatal ward]...I got a lot of 'Why aren't you breastfeeding? Why?'". There was another cluster of themes under Fear: fear of harming the baby by taking medication; fear of becoming ill, especially if not on medication. Some were worried about being a bad parent and coping with lack of sleep. Another concern was the possible strain on their relationship with their partner. The genetic risk was also a worry although there's only a one in ten chance of passing on the condition. Many women were frightened that Social Services might take their child away (a very rare occurrence dependent on many other factors). In conclusion, this study highlights the fears women with bipolar have around pregnancy and the problems they experience getting reliable information and advice. All women should be able to see a specialist perinatal psychiatrist and there is a need for more training for all health professionals. Having children when you have bipolar can be challenging and involves many decisions. It's important to get as much information about how you can stay well so find out about local services, try to get referred to a specialist perinatal psychiatrist, do some research and find out how others in a similar position have coped. It's not inevitable that you'll have a difficult time and by preparing you'll give yourself the best chance of staying well. As this contributor said: “I had only one midwife who followed me my whole pregnancy ... [who] was very aware of what bipolar is. I …was also referred to the CMHT and had a fantastic nurse who still visits me. We agreed on a care plan and I saw the psychiatrist a couple of times to decide what medication would be best ... Without the team I was surrounded by I would have probably ended up having to be in hospital. They are the only reason I managed to stay sane.” Finally, despite the fears and worries, most women said these were outweighed by the strength of their desire to have a child. There was also widespread agreement that a decision aid would be helpful and that's what I hope to work on next.