Every year in the UK, around 300 women suffer from extremely preterm pre-labour rupture of membranes (EPPROM) at less than 23 weeks into their pregnancy, which can be fatal for both her and her baby.
The baby is left without the normal protection of the amniotic fluid, which means there is a worry they could develop an infection or get injured.
Though babies can survive, some die from infection, cord prolapse, placenta abruption (when the placenta separates early from the uterus), or because labour starts when the baby is too little to survive.
Sometimes, the mother gets so unwell from an infection that her life is also at risk from sepsis and knowing the right time to deliver is vital.
Despite its huge impact on women, babies and their families, EPPROM is poorly understood. Research is limited and based on relatively small studies, and there are also no national guidelines to tell doctors how to care for women in this situation.
For example, doctors have often been told that the chance of the baby being born healthy is so poor that they should offer women a termination. However, some healthy children have been born after this condition.
A patient group called Little Heartbeats approached Professor Zarko Alfirevic's research team expressing dismay at the confusing and conflicting advice that families are being given in this harrowing situation.
So, using Wellbeing of Women and Little Heartbeats' funding, Professor Alfirevic from the University of Liverpool is now looking to understand more about this pregnancy complication.
Together with the UK Obstetric Surveillance System, Professor Alfirevic’s team has developed a survey and over the course of a year all maternity hospitals in the UK will report cases of waters breaking between 16 and 23 weeks of pregnancy.
Professor Alfirevic said: "This will form the largest ever cohort of pregnancies complicated by PPROM between 16 and 23 weeks of pregnancy and will give families and clinicians a much more accurate picture of the true prognosis after EPPROM.
“We also hope to use the data to identify situations that are associated with better, or worse, outcomes to formulate guidelines for the future."
Using this important information, Professor Alfirevic's team could help doctors care for women and babies in this very difficult situation and give new hope to families.
For support and information about preterm pre-labour rupture of membranes, visit the Little Heartbeats website.