That's one of the key findings of work by Oxford University researchers who spoke to couples who had been through this, in compiling a new resource for the award-winning patient website www.healthtalkonline.org.
The new pages covering life-threatening conditions in childbirth and pregnancy have just been launched.
Other points that emerged from the interviews included the huge difference that little examples of thoughtful care from doctors and midwives could make to how couples coped when emergency care was needed around the time of the birth of their child.
Examples included an anaesthetist who stepped out of theatre to show the waiting father a photo of his new baby on an iPhone; staff who kept a diary of the newborn baby's day in a neonatal unit that was in a different hospital to the mother; and a midwife who greeted a woman with major bleeding arriving in an ambulance with a monitor so she could hear her baby's heartbeat and know nothing had happened to him.
Severe complications in labour and childbirth aren't common. But perhaps because of this, there can be difficulties for couples in getting the support they might need or finding others that have gone through similar experiences. And for doctors and midwives who don't see many such cases, they may not be aware of what follow-up care could help.
'The online resource at www.healthtalkonline.org should help with both the need of mothers and fathers to hear others' experiences of complications in childbirth, and also provide information for health professionals,' says Dr Lisa Hinton of the Health Experiences Research Group at Oxford University, who carried out the interviews with mothers and fathers.
The healthtalkonline.org site now covers many dozens of diseases and health concerns, providing first-hand accounts of the experiences of patients and carers to give a resource that really benefits others going through the same thing.
The new resource covers potentially life-threatening complications that occur during pregnancy. These events are rare: pregnancy and childbirth is safer now in the United Kingdom than at any time in history. Yet there are a range of severe complications that when grouped together occur in about 1 in 100 births.
These include heavy uncontrolled bleeding; placenta praevia (where the placenta is low down and covers part or all of the cervix); blood clots; pre-eclampsia and very rare conditions such as amniotic fluid embolism (where the fluid gets into the mother’s bloodstream).
The Oxford University researchers from the National Perinatal Epidemiology Unit (NPEU) and the Department of Primary Care Health Sciences, funded by a National Institute for Health Research (NIHR) Programme Grant, interviewed 35 women who experienced a life-threatening complication during childbirth, and 11 fathers or partners, to find out more about their experiences and their long-term impact.
Most other research studies of complications in pregnancy have been clinical in nature and looked at outcomes for mother and child and the most effective options for care. Few have actually asked mothers and fathers about their experiences of care and what they went through.
Professor Marian Knight of NPEU, who led the work, said: 'Many of these emergencies happen during labour or immediately after, and involve severe bleeding. The mums are severely ill and need lots of care. And while everyone is running around looking after mum, it can affect dads too.
'Pregnancy complications can have long-term consequences,' she adds. 'It may involve a hysterectomy, for example, which you don't anticipate as a young woman. It can have long-term effects on mental and physical health, as well as on family relationships.
'One mother described very vividly her continuing anxiety problems, while another dad hasn't worked again more than five years after the birth through post-traumatic stress disorder.
'Because such complications are uncommon, follow up care can be patchy. Sometimes full information doesn't get through to GPs and the standard 6 week postnatal check up can come too soon for many mothers in beginning to cope with what they’ve been through. Many couples felt access to counselling was important.'