Conditions that threaten women’s lives in childbirth & pregnancy

Information, support & support groups

Women who experienced life-threatening illnesses in pregnancy and childbirth understandably need information and support, both during their emergencies and afterwards as they are recovering. Here we describe what women and their partners told us about the information they received from health professionals and where else they found out about their condition. We also look at how and where women found support.
 
Information
Women wanted information for various reasons and at various stages. These included understanding more about a condition they had been diagnosed with, before their baby had been born, or understanding more about what had happened to them afterwards. Sarah, who had grade 4 placenta praevia (the severe form of placenta praevia where the placenta completely covers the cervix/birth canal), would have liked more information about her condition, so she could be better prepared.
Some women we spoke to felt they were given enough information or knew where to find it. For example, some who had been diagnosed with conditions such as pulmonary embolism (blood clots), pre-eclampsia (high blood pressure) or HELLP syndrome (a combined liver and blood clotting disorder) felt that they were given enough information by doctors and midwives, and were able to supplement their knowledge from books and the Internet. Hana developed obstetric choleostasis (a problem with the liver that causes a persistent itch). She had an emergency caesarean to save the baby, but ended up with life-threatening complications.
But others would have liked more understanding of their condition and its risks. Sometimes people felt that health professionals had “sugar coated” the seriousness of their condition and they would have preferred to have more information so that they could be prepared. As Sarah said, “It’s better to be informed than ill-informed.” Kerry and Sarah were both diagnosed with placenta praevia and didn’t feel doctors explained to them the severity of their condition. In contrast, Alex, who had the same condition, described excellent communication with her doctors who explained to her clearly why she needed to stay in hospital until her baby was born (see ‘Communication with health professionals’)
In terms of information on offer after the emergency had happened, women often felt that there was not enough specific information made available to them. Women who had a haemorrhage and hysterectomy in particular felt that the information they were given was not written with them in mind, but rather older women who were having a hysterectomy later in life.
Because the conditions these women have experienced are rare, it can be difficult for them to find out more about them. Many of the women we talked to described feeling very isolated after they came home. None of them knew anyone who had experienced anything similar and it was hard to find information in books or even online. Several women described how they felt isolated from common sources of support, such as antenatal groups, because their experiences had been so rare and extreme. Many had to go online to find out more about their condition, and what other women had experienced, but even online it was sometimes hard to find information. These women felt that there should be information available in maternity wards aimed specifically at women who have had life threatening experiences in childbirth, with information about the support groups that are available.
Support
In spite of the rarity of their conditions, several women had found specialist online support groups which they described as invaluable. Some had found USA websites, especially for placenta praevia (the placenta may be partly or completely covering the cervix/birth canal) and amniotic fluid embolism (AFE), a very rare complication of pregnancy in which amniotic fluid, fetal skin or other cells enter the woman’s blood stream and trigger an allergic reaction, and several women had found the Birth Trauma Association website useful. Women who had had a postpartum haemorrhage and hysterectomy found an online forum just for them particularly helpful. Karen described it as an “oasis of somewhere that I could talk to women who’d been through exactly what I’d been through and to be able to pour out your grief feelings without being judged. It was like having a huge family of sisters. …It is just a place to go that you can absolutely unload”. When talking about their experiences upset their family and friends, these online forums provided a lifeline to read about other’s experiences or to chat with others who had gone through a similar experience.
 
Debbie had a uterine rupture and found a couple of online support groups including one about pregnancy after rupture. “Both have been absolutely fantastic. It’s really nice to read the stories of women who have gone on to have other children, but obviously there’s lots of complications and sadly there’s some who had ruptures again… it brings it home.”
After Samantha’s baby was born prematurely at 29 weeks, she felt very supported by BLISS, the charity for babies who have spent time in special care units. Jo found a small online forum very supportive which was set up from the Times Educational Supplement for Teachers that focuses on pregnancy, birth and parenting.
 
In terms of practical support, women and their families needed a lot of help as they recovered from their emergency. Several described support from close family; Kate and Rebecca had their mothers come to stay for a while, Rachel said, “I never looked for a support group because I did have fantastic friends and my family is very near and close and warm and was there for me big time.” Other women felt well enough supported by the hospital.
 
But some families did not have relatives who lived close by or were fit enough to help, and some would have liked to be offered more alternative forms of support. Sophie and her partner Tom felt let down that their GP did not find them some extra help at home as Sophie recovered from her blood clot and haemorrhage.
Lisa did not feel that the hospital or GP directed her to where she could have found financial and emotional support. (For more see ‘Follow up from hospital’).
 
Some women felt able to go back to antenatal groups and find support in their transition to motherhood from those groups but others felt that it was hard to go and share such extreme experiences for fear of frightening other women. Anna felt that once she was out of hospital people thought she didn’t need support any more.


Last reviewed April 2016.

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