Breaking the silence – why we need birth trauma awareness week

Next week – August 14 to 18 – is birth trauma awareness week. It has two main aims. One is to make more people aware of what birth trauma is and how it affects women (and their families) who experience it.

The other aim is to raise money so that the Birth Trauma Association can start extending its services to women by offering peer support by phone and face-to-face.

If you’re interested in helping, there are a few things you can do:

  • Tweet links to women’s birth stories using the hashtag #BreakTheSilence
  • Hold a fundraising event – you can download a fundraising pack for ideas
  • Follow the Birth Trauma Association on Twitter
  • Change your social media profile pic to include the Birth Trauma Association logo
  • Register with Thunderclap to post a message about birth trauma awareness on your timeline at 5pm on Monday 14th – the more people who register, the more impact the message will have

It’s long been clear that there’s a huge unmet need for support services for women suffering from birth trauma. Although it’s hard to know the exact number, the current best guess is that 20,000 women every year suffer from postnatal PTSD in the UK (3% of the total number of women giving birth).

One of the reasons the condition is little known about is because women don’t speak about it. And the reason they don’t speak about it is that people don’t listen. Women are used to hearing the dismissive phrase: “All that matters is that you have a healthy baby.”

Two weeks ago, blogger Sarah Oakes wrote a post called: I had a shit birth. Here’s six reasons why I really want others to know.

It’s a wonderful, eloquent, powerful piece about what it’s like to experience birth trauma. Within a matter of days, it had received 90,000 hits, having been shared on Facebook parenting groups, midwife groups and birth groups. Sarah brilliantly describes how women with birth trauma are silenced, about how dignity and respect are neglected in birth and how it feels to experience the constant hypervigiliance of PTSD: “The triggers are many and they are everywhere. A letter for a smear test, a shadow flickering past the window when you’re alone in the house at night. Shouting. The baby crying. It can all trigger symptoms – feelings of fear and threat – reducing a mother’s ability to parent well.”

The reason Sarah’s post was shared so often was because it resonated with so many women. They read it, thinking, Yes, that’s how I felt. That’s what it was like for me.

If you want to know why birth trauma is important, then read Sarah’s post. It’s time women’s stories were heard. It’s time to #BreakTheSilence.

Too many babies are dying at birth

Last week saw the publication of two reports on the deaths of newborn babies. Each Baby Counts, published by the Royal College of Obstetricians and Gynaecologists (RCOG), found that three-quarters of the babies who die or are brain damaged during childbirth in the UK might have been saved by better medical care.

The MBRRACE report found that between 2013 and 2015, the stillbirth rate fell from 4.2 to 3.87 per 1,000 births. That’s good news, though the report noted that the stillbirth rate is still higher than many similar European countries and that there is “significant variation” across the UK – variation that can’t be explained simply by factors such as poverty or maternal age. In other words, the difference is likely to be the result of different practices in different hospitals.

Each Baby Counts investigated the cases of 1136 cases of babies born in the UK in 2015 who either suffered brain damage during birth, or died during delivery or in the next week. Of those, the report estimates that 550 babies could have been saved. Shockingly, in 409 cases, the Each Baby Counts team wasn’t able to determine whether the babies could have been saved because the information provided wasn’t good enough.

And that’s the real scandal. The best way to improve medical care and prevent unnecessary deaths is through the collection and analysis of evidence so that we can determine best practice that can then be followed by every hospital in the country.

Childbirth is a complicated business because it can involve countless small decisions that women have to make in conjunction with their caregivers. Each one of those decisions has the potential to increase or decrease the risk of harm to the mother and baby. Decisions are rarely easy to make because every intervention (induction, foetal monitoring, epidural, episiotomy, forceps…) can increase some risks while decreasing others. This is why evidence is so important.

Doctors don’t always know best

Ben Goldacre illustrates the importance of evidence through the example of head injuries. In a blogpost, he writes:

“For many years, it was common to treat everyone who had a serious head injury with steroids. This made perfect sense on paper: head injuries cause the brain to swell up, which can cause important structures to be crushed inside our rigid skulls; but steroids reduce swelling (this is why you have steroid injections for a swollen knee), so they should improve survival. Nobody ran a trial on this for many years. In fact, it was widely argued that randomising unconscious patients in A&E to have steroids or not would be unethical and unfair, so trials were actively blocked. When a trial was finally conducted, it turned out that steroids actually increased the chances of dying, after a head injury.”

It may be that some midwives and obstetricians have instinctive beliefs about reducing the harm to mother and baby that turn out to be completely wrong. It’s hard to know until we collect the evidence. Yet we do know that some trusts, such as Southmead Hospital in Bristol, and Barking, Havering and Redbridge University Hospitals, have adopted good practice that has led to the reduction of birth injuries in the first case, and of errors relating to the CTG trace in the second (errors caused by misreading the CTG trace are a common cause of injury and death in newborn babies).

Other countries manage to have far fewer babies die at birth than we do. It’s not an impossible dream. But if we are serious about saving the lives of newborn babies, then we have to start with the absolute basics: collecting the data to find out why they are dying.

The drug that could cut deaths from postpartum haemorrhage by a third

Every year, about 100,000 women die from haemorrhage after childbirth. Most of these deaths are in poorer countries such as Somalia or Sierra Leone where many give birth at home, without access to medical care. Even women who haemorrhage in hospital may still die, though sometimes doctors will perform a life-saving hysterectomy.

In Western countries, although postpartum haemorrhage (PPH) is relatively common (in England, 13.8% of women haemorrhage after childbirth), most women who need it will receive an instant blood transfusion. Deaths from PPH are rare.

So it’s extremely good news that a new trial has shown that administering a simple, cheap drug called tranexamic acid, which works by stopping blood clots from breaking down, could potentially save the lives of about a third of women who currently die from PPH. The study was carried out by the London School of Hygiene and Tropical Medicine in collaboration with 193 hospitals in Africa and Asia.

The most extraordinary part of this story is that tranexamic acid was discovered in the 1960s by a Japanese husband-and-wife research team, Shosuke and Utako Okamoto. They were unable to persuade doctors to perform a clinical trial, so the drug has mostly been used as a treatment for heavy periods and to reduce bleeding as a result of trauma.The WHO currently recommends its use for PPH as a second line treatment if the first line treatment of uteronics (drugs to contract the uterus) fails. This new research shows its efficacy as a first line treatment.

Even though its impact will be smaller, it is also good news for women in developed countries. Many women who suffer from PTSD after childbirth trace it back to their experience of severe PPH, and the terror of believing they were about to die. If administering tranexamic acid eventually becomes standard practice to reduce haemorrhage, then for those women, birth will become a less frightening experience.

At last: the NHS acts on maternal mental health

Good news: in the next five years, NHS England will create 20 new specialist treatment centres for women who suffer from mental health problems during pregnancy or after birth.

This has been a long time coming. For years the government has promised to address the poor quality of mental health care for new mothers, and finally it’s putting its money where its mouth is. Admittedly it’s not very much money – the centres will be funded to the tune of £40m, which is unlikely to cope with the scale of the problem: an estimated one in five new mothers (about 120,000 women a year) experience mental health problems.

The majority of these women suffer from postnatal depression, but a substantial minority will have post-traumatic stress disorder (PTSD). The most conservative estimate for PTSD after childbirth is 1.5% (about 10,000 women a year in England and Wales), but researchers now think that the true figure is probably double that. PTSD can’t be cured with a pill: treatment, usually trauma-focused CBT or eye movement desensitisation and reprocessing (EMDR) takes several weeks, and is expensive.

Having spoken to many women suffering from postnatal PTSD, I know that it can be hard to find specialist help. It’s not unusual for women to have to wait months for treatment, during which time they suffer the stress of flashbacks, nightmares, anxiety and terror. They are often frightened to leave the house and avoid contact with other new babies, making them isolated on top of everything else. All of these things have an impact on their relationship with their baby and with their partner. It’s not surprising that ­– according to the Guardian report of the NHS’s plans – perinatal mental health problems cost the UK £8.1bn a year.

So while I welcome the new centres as a step in the right direction, much more needs to be done to make sure that women with PTSD and other mental health problems receive the support they require. Even more importantly, I would love the NHS work towards preventing these mental health problems from arising in the first place. Most women with postnatal PTSD believe that it was caused, not solely by a traumatic birth, but by the feelings of helplessness and lack of control during the experience, and by the casual and sometimes even cruel attitude of healthcare professionals looking after them.

Some of this can be addressed by better recruitment and better staff training. But the NHS also needs to adopt rigorous standards of care that hold health professionals accountable: making sure that procedures aren’t carried out on women without their consent, for example, or that women are denied necessary pain relief. In a 21st century health service, in a wealthy democracy these things shouldn’t be difficult, but the stories I hear from traumatised women about poor care show we still have a very long way to go.

It’s time we talked about perineal trauma

Today’s Victoria Derbyshire programme had an excellent film about perineal injuries during childbirth. You can read the associated article and see the film here (it’s about 15 minutes long). Four women shared their experience of having third or fourth degree tears during childbirth, resulting for some of them in urinary or bowel incontinence.

One of the striking facts in the film was that between 2000 and 2012, the rate of severe tearing during vaginal delivery increased from 2% to 6%. Although the programme was careful to state that this was “very rare”, in practice this translates into about 30,000 women a year. This huge increase in the rate, an obstetrician told the programme, was down to three main factors: the older age at which women have their first baby; an increase in the size of babies being born; and women themselves being bigger and heavier. But this isn’t necessarily the full explanation: the increase may simply be down to better recognition of tears as a result of the implementation of standard classification.

The programme also read out text messages from viewers. What was sad was the clear variability in treatment available. Although some women said their injuries had healed, others said they had been fobbed off when they complained about their perineal injuries, or that the injuries had persisted over months and years. One of those interviewed on the programme was effectively told that it was all in her head.

The good news is that the professionals are now taking this seriously: the Royal College of Obstetricians and Gynaecologists (RCOG) and the Royal College of Midwives (RCM) have developed an intervention package to reduce tearing in childbirth. The package is really just a simple change to the recommended way in which midwives deliver the baby, which has been shown to reduce tearing. It is being piloted in a number of hospitals and will eventually be rolled out throughout England.

Nonetheless, it’s shocking that in this day and age that a problem affecting so many women isn’t talked about or even taken particularly seriously. It was clear from the programme that many doctors aren’t adequately trained to deal with perineal tears. That – as well as better care during delivery – needs to change.

Too posh to push? I think you’ll find it’s a bit more complicated than that

A story last week claimed that caesarean sections were on the rise because women are demanding them.

The Times story, headed “Hampstead mothers are behind rise in caesareans” began like this:

“Caesarean sections are twice as common in some NHS hospitals than others, according to a report that suggests some doctors are more willing to give in to women’s demands for the procedures.”

Middle-class women – and middle-class mothers in particular – seem to be a particular focus of hate for a lot of the press, which is odd, given that middle-class mothers make up much of their readership. “Hampstead mothers” is a real dog-whistle phrase, conjuring up as it does posh, entitled women who have the nerve to think they should be able to deliver their babies whichever way they want, rather than meekly doing what the doctor tells them. (Let’s assume the Times doesn’t want us to believe that women living in Hampstead are literally behind the rise in caesareans throughout the country.)

There’s even a faintly disapproving quote from Louise Silverton of the Royal College of Midwives: “Some women do opt for a caesarean section because they can’t cope with the uncertainty. They control the rest of their lives, but they can’t control labour.”

What a bunch of feeble losers, eh?

Or could there be another reason why women have caesareans? Both Susanna Rustin and Hadley Freeman in the Guardian do a good job of showing how ridiculous this story is. Freeman points out that the rising age of women giving birth and the growing size of newborns are both factors in the growth in caesarean sections.

But we should also remember that most caesareans aren’t carried out as a result of the woman demanding them. The national c-section rate now stands at 26.2%. Half of those are emergency caesareans, carried out when something has gone wrong and the procedure needs to be performed urgently to save the life of the mother or the baby.

The other half are “elective” or “planned” sections – a misleading name, because they imply that the woman has elected to have them. In practice, “elective” simply means that the caesarean has been scheduled in advance, almost always for medical reasons: placenta praevia, which means the birth canal is blocked, and the baby cannot be born vaginally; a breech presentation, which makes a vaginal delivery more difficult; or the woman has had a previous caesarean, and a vaginal delivery might be dangerous.

Sometimes women do choose a planned caesarean (and sometimes doctors refuse – it’s not a given that obstetricians will agree to perform the procedure). Why? Well, not because they’re entitled or pushy or hate uncertainty. Very often it’s because they’ve had such a traumatic experience the previous time that having a caesarean feels like the safer, less frightening option. Or perhaps they’ve had a caesarean before and don’t want to risk rupturing the scar (a small risk, but nonetheless a real one with potentially fatal consequences). Perhaps they suffer from tokophobia – an extreme fear of childbirth.

For what it’s worth, I’ve never met a woman who has opted for a caesarean because she “can’t cope with the uncertainty” or is “too posh to push”. Giving birth is almost always going to be an intense and painful experience, however the baby comes out. It’s time to stop making women feel worse by berating them for supposedly giving birth the wrong way.

Maternity Review: the good, the bad and the not quite sure yet…

Today saw the publication of Julia Cumberlege’s Maternity Review, Better Births. Commissioned in the wake of the Kirkup investigation into the deaths of babies at Morecambe Bay, its remit was to improve the outcomes of maternity services in England.

I’ve had a look and there’s some good stuff in there. The personal maternity care budgets have been grabbing the headlines, but there are some recommendations that have been overlooked. These include:

  • Thorough, open, multi-team investigations when something goes wrong, such as a baby dying
  • A national, standardised process for investigating mistakes
  • Collection of data on the quality and outcomes of maternity services, so that maternity teams can measure their own performance and compare it against other maternity teams
  • Multi-professional working, with teams of midwives and obstetricians working together in the best interests of mother and baby

These all represent a huge step forward. One of the big problems at Morecambe Bay was the lack of communication between midwives and obstetricians, and an apparent “them” and “us” mentality. There was also an unwillingness to investigate when things went wrong, so that the same things kept going wrong, time and time again.

It’s very important that people are able to learn from their mistakes. The aviation industry was able to slash the number of air accidents by adopting an open approach to errors: encouraging staff to report their own mistakes without fear of being blamed and to come up with suggestions for improvements. But there has long been a culture of blame and cover-up in the NHS – time and again I’ve heard stories from women of trusts that failed to acknowledge their mistakes and sought to put the blame elsewhere. A remarkable number of trusts manage to “lose” a woman’s maternity notes as soon as a complaint is made. So a move towards acknowledging mistakes and putting steps in place to rectify them is long overdue.

On the other hand…

There are other elements of the maternity review I’m less sure of.

The recommended change to payment systems needs to be treated with caution. The review wants to “shape the payment system to reflect the different cost structures of different models of providing care” and also to “incentivise community deliveries where clinically appropriate”.

It suggests “working with providers to undertake a bottom-up costing exercise and proposing adjustments to the existing tariff in light of this so as to more accurately reflect relative costs. This could include potentially introducing different prices for home births, freestanding midwifery units, alongside midwifery units and obstetric units.”

Obviously it’s important that women have the choice to give birth at home or in a midwife-led unit if they prefer. But there is a danger that trusts will try to save money by encouraging women towards those options when they’re not clinically appropriate. As soon as you offer financial incentives, you also offer an incentive to cast clinical judgement aside in favour of saving money.

Personal budgets – too many unanswered questions

Finally, we’ll have to wait and see what happens with personal budgets, but it’s difficult to see how they will work in practice. Personal budgets have been used successfully for people with long-term conditions, but giving birth is unpredictable: if you use your budget up on antenatal classes and hypnotherapy, what happens if you suddenly need an expensive emergency caesarean? Or if you want to sue your private provider, paid for by a personal budget, who pays – the provider, or the NHS?

More fundamentally, women need good quality care, and the opportunity to choose between a number of poor options is not really a choice at all. So, while I’m not totally against personal budgets, I’d really need to see a lot more detail before I’m convinced they’re the route to delivering the best outcomes for women and their babies.