What is placenta accreta syndrome - and why aren’t women being told about it?
Placenta accreta spectrum (PAS) is a life-threatening complication of pregnancy – yet it is under-diagnosed and poorly understood, writes Sarah Jewell
“My pregnancy started off normally, but at eight weeks, and then at 16 weeks, I had heavy bleeding and I started panicking.” Chloe Robinson, 34, was scanned and told her placenta was lying really low in her uterus and this was causing the bleeding. She felt reassured and despite the fact she continued to bleed intermittently Chloe was left unaware for the rest of her pregnancy that she actually had placenta accreta spectrum (PAS).
PAS is a life-threatening condition that occurs when the placenta (which gives the foetus oxygen and nutrients) grows too deeply into the muscular layer of the uterine wall and cannot separate from the uterus after birth. If undiagnosed before going into labour the mother is at risk of needing an emergency hysterectomy or bleeding to death from a severe haemorrhage.
Pregnant women are at much greater risk of developing PAS if they have already given birth by caesarean section (due to the placenta growing into the scarring on the uterus), IVF (due to how the embryo implants in the uterus) or other uterine trauma.
This was Chloe’s second pregnancy – her first baby was born by c-section. At 34 weeks she was due to have a planned caesarean because of her placenta praevia (low-lying placenta), but on the day of the booking she suddenly started haemorrhaging and was rushed to hospital by ambulance. She lost nearly six litres of blood and heard the doctor saying. “Call the gynae team – we’ve got a suspected accreta”. Chloe says she felt completely overwhelmed: “I had no idea what they were talking about as this was the first time that I’d ever heard the word ‘accreta’ mentioned.”
PAS is on the increase
After Chloe’s baby was born, she was given a general anaesthetic and she was shocked to hear that the doctors had performed a hysterectomy: “I woke up six hours later and felt horrendous. My baby was fine initially, then she started having issues with her breathing and seizures and they took her to the intensive care unit.” Chloe was later told that her baby had had a neonatal stroke. She was later diagnosed with cerebral palsy.
Chloe’s traumatic experience is unfortunately not unusual. PAS is on the increase – NHS statistics show that between one in 300 and one in 2,000 women develop PAS, and the numbers of women at risk is growing due to the rise in births by c-section which now make up about 45% of deliveries.
After their own traumatic birth experience, Amisha and Nik Adhia started their own campaign, Action for Accreta, to highlight the problems and raise awareness about this life-threatening condition.
Amisha had her first child by c-section and when pregnant with her second child she attended a 12-week private scan with Dr Chineze Otigbah, a consultant obstetrician and gynaecologist. Dr Otigbah gave them some worrying news, says Amisha: “She said, ‘What do you know about placenta accreta?’ We were bewildered as we had never heard of it, but when I went back at 16 weeks for another scan she confirmed the diagnosis and advised further monitoring.”
The situation started to get complicated, however, when Amisha and Nik went to their incumbent hospital and asked to be seen by the foetal medicine unit for a second opinion. As Nik explains: “We went to that appointment and the doctors said that Dr Otigbah was incorrect and there was no indication of any accreta”. They were left feeling “really alarmed” says Amisha: “We felt that their reassurance was actually a dismissal of Dr Otigbah’s concerns - I was repeatedly told that I had almost zero risk of placenta accreta as my placenta was high up, rather than low lying.”
Amisha ended up going to five different hospitals and when her care pathway was shared between them this led to chaos as her medical referrals stalled or collapsed. At 28 weeks Amisha and Nik felt utterly helpless. “We both sat down and were crying our eyes out,” says Amisha. “We just didn’t know if there was a future left for us – potentially I was not going to make it through the birth of our baby.”
Atypical PAS is often missed
They spoke again to Dr Otigbah and asked her to perform the delivery. Amisha says this changed everything: “Dr Otigbah said she would look after me like her own sister – it was the biggest light in my whole pregnancy”. They were put in touch with a specialist PAS midwife and the c-section went ahead smoothly at 36 weeks, but Dr Otigbah said the accreta was much worse than they had realised and that the reason it was hard to recognise was because it was atypical.
As Dr Otigbah explains: “Accreta is more difficult to diagnose if the placenta is growing away from the lower part of the uterus. This type of PAS has many names: atypical PAS, fundal or focal PAS, non-previa PAS. It is this type of PAS which is often missed, because it is not looked for.”
Amisha says that she was later told by a medical professional at the hospital that her daughter “may not have made it.” She and Nik didn’t want other families to go through their experience and have made it their mission to raise awareness about the dangers of PAS. As Nik says, “There is just not enough education about this condition”. They started speaking to “lots of women from the UK to the US to Canada” and realised this was “something bigger” than they had first thought. As Nik says, “We stumbled across hundreds of women who nearly died and stories of women turning up to hospitals that are ill-equipped to deal with all the complications of accreta.”
The Royal College of Obstetricians and Gynaecologists (RCOG) has recently updated its guidelines on placenta accreta to include better recognition of risk factors and earlier identification of women at risk, with a key focus on “anticipation rather than emergency management”. But, as was revealed in the recent Amos review, the government has confirmed that PAS isn’t currently a routine NHS maternity safety indicator and that there is no mandatory national reporting system for PAS.
Guidelines do not go far enough
Nik says that he and Amisha do not believe the RCOG guidelines go far enough: “The latest ones do not adequately address non-previa and atypical presentations, and we think that an entire category of women still remain at risk with the updated guidelines.”
Dr Otigbah believes that all women need to be made aware of the risk factors and “openly enquire as to what the policy is for managing them both electively and as an emergency”. It is only then, she says, that the caregivers will “focus their attention on answering the patient’s needs”.
Louise Keane, a lead PAS midwife, says that “any bleeding in pregnancy needs to be investigated, but if the woman has a history of previous caesarean section, or any uterine surgery or an IVF pregnancy, they should be referred to a fetal medicine unit/PAS centre as soon as possible.” She knows first-hand how important it is for women with accreta to be supported by a specialist PAS midwife: “When a woman starts bleeding, she calls me, and I provide that familiar voice, support, and reassurance while they are experiencing quite possibly the scariest time of their lives.”
Chloe agrees that it is essential for women to be supported, informed and also to advocate for themselves. “Be a nuisance”, she says. “Sometimes it’s the only way to get answers”. She also wants more information to be available about warning signs: “I had pain on my previous c-section site from about 20 weeks but it was dismissed by the medics, and I was told ‘it’s just stretching.’ Now I know there was clearly something wrong.” With more knowledge things could have been very different, she says: “I would have still got accreta but I would have been given the chance to manage the situation in the best possible way.”
Sarah Jewell is a freelance journalist.
