Partners, family and friends: impacts and experiences in relation to pre-eclampsia
Partners, family members and close friends played varying roles through pregnancy and illness, including: talking about possible symptoms and signs; encouraging the woman to seek medical help; being there when the diagnosis was given; taking women to monitoring appointments and/or into hospital; visiting women whilst they stayed in hospital and/or taking in their personal belongings (e.g. clothes, toiletries); being there for the birth; looking after women as they recovered; and looking after babies who were born early or who had health problems. Partners, family and friends having concerns
Sometimes partners, family or friends had voiced concerns about the woman’s health and encouraged her to seek medical help. Paige said one of her friends at university thought she had pre-eclampsia some time before she was officially diagnosed. Some of Hanna’s work colleagues suggested the same because of her swollen feet. Olivia and Josie’s partners were both medically trained and so sometimes checked their blood pressure to keep an eye on them.
However, most partners, family members and friends did not know much about pre-eclampsia. Michael said he had never heard of pre-eclampsia before, but the doctors explained it clearly after his partner was diagnosed. Stewart said that he thought some of the symptoms were quite normal in pregnancy and didn’t realise it was anything to be concerned by. He would have liked an information leaflet rather than being “left to go on different websites where information might differ”. Some of Paige’s family initially thought the symptoms she was experiencing were normal in pregnancy, although her mum pushed for her to call the hospital when things became worse. Claire and Munirah both told their midwives early on that they have a family history of high blood pressure problems in pregnancy. A few women whose female relatives (mums, sisters or aunties) had pre-eclampsia had heard quite a lot about it. Mairi’s mum had pre-eclampsia in the past and so “she was always on edge as to whether I was looking puffy”. Kay’s sister had pre-eclampsia late in her pregnancy and it seemingly made little difference: “they put her on blood pressure medication and they took the baby out – ta da”. One of Paige’s family friends had pre-eclampsia and warned her that there’s a tendency for blood pressure to spike again a few days after giving birth. Stewart felt that partners can be an important source of information for doctors and midwives in understanding a pregnant woman’s symptoms, providing they know what to look out for. He said that his wife “plays everything down” and so would sometimes not speak up about how much physical discomfort she was in. Although it can be hard for partners and family to pick up the signs. Kay said she tried to hide from her partner how ill she was and how much of a toll it was taking on her.
Information for partners, family and friends
It was important that women as well as their partners were kept up to date with information from their doctors and midwives, especially when in hospital. This included information about their diagnosis and how the situation was changing. Sometimes women were not able to take in the information, so partners took on the role of asking questions to understand what was happening. Stewart remembered the anaesthetist was very good at explaining what was happening the caesarean section procedure, which helped him feel calmer.
However, this wasn’t always the case. Hanna didn’t feel the hospital gave her husband enough information or answered his questions, which left him feeling “helpless”. There were some situations when women, their partners or family members thought information had been withheld to protect them. Stephen said that “the piece of the jigsaw that was missing, and I don’t know whether that’s deliberate …is how quickly you [Mairi] could have been a lot more poorly. That wasn’t obvious to me at least”. Janine’s mum “twigged” when something was wrong but “didn’t let on to me in case it made me more panicky, that my blood pressure would go up even more”. Women who had been severely ill sometimes could not remember everything that happened whilst they were unwell. Some found it helpful to try and piece it together through things their partners remembered and their medical notes. Claire thought it was good when doctors and midwives explained things to her husband: “whether they were aware maybe I wasn’t taking it in properly as well, but they were always at pains to make sure he understood”. Hanna said she remembered bits and some things “from what my husband tells me”.
Partners sometimes took on a bridging role to the wider family. As Stephen explained, “it not just you two… you’re going to have to then be able to relay and reflect ‘this is what’s happening and this is why this is happening’ [to parents and in-laws]”.
Being there for women at difficult times
The women we spoke to often said that their partners had been a great support, especially when they were frightened and upset. Olivia’s partner “had to coach me through every single contraction”. Samantha X said she and her partner tried to “be jolly” about the hospital stay and “make the best of things”. Stephen tried to “keep the spirits up” as his wife, Mairi, was having an epidural put in. But partners couldn’t go into the operating theatre with women who had a general anaesthetic for their caesarean sections. This was the case for Michael who remembers anxiously waiting down the hallway for news. In the later stages of illness, decisions could happen very quickly. Several women had to call or text in a hurry to let their partner know the baby would need to be born soon. Samantha X’s partner was delayed because of traffic. Josie remembers her husband arriving whilst she was in the operating theatre: “I don’t think they were waiting actually; I think they would have started …things were looking very bad at the time”. Kelly’s partner missed the birth as he wasn’t able to get there in time.
Often mother and/or baby needed specialist medical care. Babies born early or with health problems often went to a neonatal unit like SCBU (Special Care Baby Unit) or NICU (Neonatal Intensive Care Unit), and some women needed to go to Intensive Care Unit or High Dependence Unit after giving birth. This could mean being separated in different parts of the hospital or even in different hospitals, making it difficult to spend time together. Samantha X encouraged her husband to spend time with their baby as she didn’t want her daughter to be alone. Mothers sometimes weren’t able to see their baby for a few hours or even days because they were themselves so unwell. Paige was upset she couldn’t see her baby but she was glad other members of her family spent some time with her daughter in SCBU: “at least with them going to see her, she knew she had people there for her”. As well as bonding with the baby themselves, partners and other family members sometimes brought photos and videos of the baby to the woman so she could see. Difficulties, challenges and limits
Partners were themselves often very worried and shocked by what was happening. Julie felt “it was frightening for my husband, so he had to sit back and just watch it all unfold”. Paige’s partner broke down in the operating theatre and thought he might have to leave during operation; after a pep talk, he was able to stay. Stewart pointed out that “there’s no class or anything that the dads can go along and tell their worries or troubles that they’ve got after” which would be an equivalent to mother-and-baby groups.
Some women had other children too who were affected by the woman being unwell with high blood pressure problems in pregnancy. Kay’s 14 year old daughter had worried she might lose both her mum and hew new sibling. Sometimes partners felt like a bit of a ‘spare part’. As Kay said of her partner, “I was expressing milk so I felt like I had something to do, but he needed that [a way to be involved]”. Stewart recalls a few times when he said “the wrong thing” and felt “a wee bit lost” trying to help his wife.
There were some practical difficulties too. Often there was nowhere for partners to rest or sleep. Dominie’s husband stayed most of the time she was in hospital as the car park charges meant it wasn’t worth him coming and going. He had to sleep on a reclining chair and sometimes needed to move if the midwife needed to get to equipment behind the chair. Mairi remembered her husband being told off once for lying on the bed with her. Stephen said the male toilet was beyond the maternity unit so “you have to go out and then buzz to get back in”, which was noisy and required a member of staff to let him back in. Partners, family and friends often wanted to be there to help women recover and to look after their babies. However, it was tricky balancing time off work. Partners were often saving paternity leave for when their baby was discharged from hospital which, for those babies in a neonatal unit, could be days, weeks or months away. So women who were allowed home from hospital often had to manage on their own. Other family members sometimes helped out. Nicola’s husband had barely any paternity leave left by the time she was discharged, so her mum “stepped in”.
A few people were able to make special work arrangements. Michael had some half-days and Hanna's husband took annual leave. After their baby died following complications from severe pre-eclampsia, Munirah’s husband spent some time working from home so he could be around more. Julie’s husband would get up very early in the morning before work and do tasks around the house so that she didn’t have to worry about them. Sometimes women felt that their loved ones were not necessarily or always the people they wanted to talk to about what had happened. Paige explained: “[family members] went through it with you but they didn’t actually go through the actual things, so it's hard for them to understand where you're coming from”. In contrast, support groups of other women who have had pre-eclampsia are people “you feel like you can vent to”. Through mother groups and support groups (e.g. for premature babies), women sometimes made new friendships. You can read more about support from others with similar experiences in the sections on information and support.