Women have had to undergo major emergency surgery, including a hysterectomy, when medical staff failed to detect they had a rare but potentially fatal complication of pregnancy.

Scores of women have come forward to tell their stories of how they were affected by placenta accreta spectrum (PAS) since the launch in February of a campaign to raise awareness among NHS staff and mothers-to-be of the dangers it poses.

One of them lost so much blood while giving birth that she has had to give up working as an NHS operating theatre nurse and suffers from PTSD.

Another lost six litres of blood and blames her daughter’s cerebral palsy on the stroke the child had while hospital personnel were battling to save her life after an emergency caesarean section. Others have suffered permanent damage to their bladder or bowels.

PAS is associated with a history of C-section birth while assisted fertility using in vitro fertilisation also increases the risk.

It occurs when the placenta, which gives the foetus nutrients and oxygen, grows too deeply into the wall of the woman’s uterus. This makes the usual separation of the placenta from the uterus during birth difficult.

One hundred women who are concerned about how medical teams dealt with their PAS have contacted Amisha and Nik Adhia, who set up the Action for Accreta campaign. The couple have collated the women’s experiences into a dossier of stories that vividly illustrate how often the condition goes undetected and the appalling physical consequences for those involved.

Seventy-five of the 100 cases are from around the UK and the others from abroad. In other cases, mothers suffered permanent damage to their bladder or bowels. Worryingly, six out of 10 of the 100 women say their PAS went undiagnosed, increasing the risk of them bleeding to death.

The 100 cases reveal “a dangerous gap in maternity care” and “systemic failures” that should prompt UK hospitals to do much more to train staff how to spot and treat PAS once it is diagnosed, say campaigners. Politicians from all the main parties at Westminster are supporting their call for a major overhaul in how the NHS manages the condition.

Erin Cooper was never assessed for PAS even though she regularly bled heavily from 26 weeks into her pregnancy until she delivered her baby by emergency C-section at 33 weeks in 2024.

“What I didn’t know, what no one had diagnosed, was that my placenta was abnormally and dangerously attached.

“The haemorrhage was catastrophic. I lost 4.5 litres of blood. I needed a massive blood transfusion – 13 units in total – and to save my life they had to perform a hysterectomy,” said Cooper, from Bedfordshsire.

“It was like a murder scene. I now have PTSD around blood. I was a theatre nurse. I’ve had to change jobs and can no longer work in a patient-facing role. I get panicky when I hear sirens. I can’t drive past the hospital without feeling like I’m about to have a panic attack.

“I feel a deep loss of my womanhood. I’m now going into early menopause. Not a day goes by when I don’t think about being infertile at 33.”

Chloe Robinson from Burnley was taken to hospital in the middle of the night when she began bleeding heavily at home at 34 weeks pregnant in July 2024.

“In theatre they discovered I had placenta accreta, something no one had suspected. They had to get several members of staff who were on call into the hospital because they weren’t prepared. I lost six litres of blood and had a hysterectomy to save my life.

“My daughter had a stroke, which I believe was due to the traumatic birth [and] she now has cerebral palsy. If they had found the condition before, none of this may have happened,” she said.

Cerri-Anne Almond’s PAS was only discovered during her C-section in 2021.

“As soon as the surgeons opened my abdomen it became clear something was wrong. The placenta was abnormally attached to my uterus. A more specialised surgical team was urgently called in. I’m one of the lucky ones,” she said.

“The stories in this dossier are a devastating read. Hearing these accounts has exposed dangerous gaps in maternity care”, said Amisha Adhia, who launched the campaign when five hospitals failed to spot that she had PAS.

“The fact that 61% of women in this report went undiagnosed proves that the essential infrastructure simply does not exist. There is no central data, no mandatory reporting and no national body responsible for PAS, meaning best practice stays locked away in a handful of specialist centres while women elsewhere are left unprotected,” she added, referring to the NHS in the UK.

A woman is at higher risk of PAS if she has had a previous birth by caesarean section because the placenta of her new pregnancy can attach itself to the scar of her C-section. It is unclear exactly why IVF seems to also heighten the risk of the condition. Doctors believe that the process of transferring and implanting an embryo into the woman during treatment may explain it, though they add that the extra risk posed by IVF is “small”.

Jeremy Hunt, the ex-health secretary who chairs Westminster’s all party parliamentary group on patient safety, urged NHS leaders to learn from the stories.

“Nik and Amisha have highlighted an important and under-recognised issue in maternity care. These stories and the Action for Accreta campaign highlight worrying gaps in how PAS is identified, recorded and managed across the NHS.

“Addressing these will require a more consistent, system-wide approach, including improved data, training and clinical preparedness.”

Kim Thomas, the chief executive of the Birth Trauma Association, added: “PAS is a dangerous complication of pregnancy, and terrifying for the women who experience it.

“As a charity, we have seen too many women experience deep psychological trauma as the result of PAS, particularly if diagnosis has happened late.”

“Every mother deserves to be heard and Baroness Amos’ independent investigation [into maternity care in England, due next month] will help us understand the systemic issues behind the unacceptable care many families have faced.”

Ministers have allocated an extra £149m to improve maternity safety], the NHS has recruited more than 2,000 more midwives and Martha’s rule now gives patients and their families the right to a second opinion.