Support during and after pre-eclampsia
Support was received from a range of people. A key source was partners and family members. Hanna’s mum helped her bond with her baby. Paige’s family helped her get to and from hospital when visiting her baby and going to GP appointments. Angela had a close friend who reminded her “don’t be hard on yourself”. Emma found her local children’s centre really good – they gave advice with breastfeeding and she met other mums, including some with similar experiences of pre-eclampsia. Munirah spent a lot of time with her family after her baby died and she found going back to work part-time helped, as she could “just have a normal conversation” with colleagues. Difficulties
However, partners and family members sometimes found it difficult to know how to support women with pre-eclampsia. Partners sometimes felt they had to put their own emotions to one side in order to care for the woman and baby. Stewart said there are times when “you say the wrong thing and then you'll get your head bitten off”. He pointed out that while there are support groups for women, including those specifically about pre-eclampsia and being new mums, he didn’t know of any similar support groups for dads. Some women felt their family, friends and work colleagues struggled to know what to do or say. Samantha X thought some people distanced themselves from her because they were unsure about how to act or whether to ask about her daughter’s health.
Women had different support needs. While some said that they had enough with their partner, family and friends to support them, others felt that there should be more support available. Betty didn’t feel a need for support after giving birth as it felt the experience was finished, but she would have liked more help regarding having a premature baby. Julie found it “very bizarre that you can go through such a massive thing” and then be discharged home with potentially no practical or emotional support. Emma thought it would be good to offer the option of seeing a counsellor in the first few months after having had pre-eclampsia. Support gained through sharing/shared experiences
While many women found it helpful to talk about their experiences, it was hard sharing these with mums who had had a ‘normal’ experience. Hanna avoided going to mother-baby groups as she was worried someone might ask about her pregnancy and birth experiences. In contrast, speaking to women who also had pre-eclampsia could be reassuring. Angela went online and found it “therapeutic” to know that others had difficult births too and that she was not alone. Sometimes it was an unexpected discovery that someone else had experience of pre-eclampsia or HELLP syndrome. Helen X said that when she tells someone about her experiences, others’ stories of premature babies seem to “come out of the woodwork like nothing else”. However, hearing other people’s experiences could also be upsetting and triggering for women. Julie said she wouldn’t have coped hearing others’ stories or talking about her own for about two years after she had pre-eclampsia.
Some women had participated in groups focused around shared experiences of pre-eclampsia and/or premature babies, either online or face-to-face. While Paige was grateful for the support from her family, she felt that sometimes it was better to talk online about the emotional impact. Some women had made lasting friendships with others they met with similar experiences through support groups. Not everyone wanted to talk about their experiences or felt able to do so. Lyndsey remembered the other mums talking about their birth experiences at the end of a baby massage class: “I didn’t want to really want to tell loads of people… I didn’t want them to think that I was trying to make my experience more worse than theirs”. Julie explained: “I’m not one of them that would want to sit there and talk, especially not at the beginning. I don’t think that would-, well I wouldn’t have gone”. Kay held back from telling others how ill she was and her feelings afterwards. She knew about a premature baby support group but didn’t want to go at first because she was worried the other parents would have their babies with them whilst hers was still in hospital.
With time, most of the women we spoke to became more comfortable talking about their experiences and found it helpful. After initial reluctance, Kay found it really helpful being part of a premature baby support group: “it was a support group for people who had had pre-eclampsia too because the majority of folk who have babies early it is pre-eclampsia unfortunately”. Julie said she now felt in a place where she would be okay discussing it and would like to offer reassurance to other women in the situation she had once been in. Tracey had pre-eclampsia 11 years ago and thought, with hindsight, she should have sought out more support.
Some women were also keen to share by giving support to others who might or have gone through pre-eclampsia. As Julie explained, “if people can be educated by it [my experiences] and learn from it, then why hide from it”. Lyndsey appreciated being able to give support to others through an online forum, including sharing tips such as taking a lipbalm into SCBU (Special Care Baby Unit) as she found the air dry. Emotional support from health professionals
In addition to providing medical care and often information, health professionals were sometimes also an important source of emotional and practical support. Some women and partners remembered individual midwives and/or neonatal nurses in particular who had been supportive and caring. Angela said the nurses in SCBU involved her and her husband, and were “generally just kind, nice, attentive”. Others helped with things like learning how to breastfeed and change nappies. Helen X said this practical support made it easier when it was time to take her baby home.
However, not everyone received emotional support from health professionals. While Julie X felt the medical care she received was “absolutely second to none”, she would have liked more time to “talk things through” with someone. Tracey was frightened in the run up to giving birth and then felt very alone afterwards. She wished someone had been there to offer her reassurance: “I didn’t actually care who it was; it could have been the tea lady for all I care – it was somebody to hold my hand”. Often it was thought that a lack of practical and emotional support from health professionals was because they were very busy and had time constraints. Angela thought there should be more follow-up from midwives after discharge but that “they can't. I expect they would love to but they don’t have the capacity to which is a crying shame”. Counselling
Some women had counselling, either through a referral from health professionals or privately. A few people had been offered counselling but decided not to pursue it, as it wasn’t the right time or approach for them. Kate felt the support from her family and friends was enough. Julie had a friend who is a clinical psychologist and helped her with “working through it”.