Belinda Benton's second pregnancy was going swimmingly - or so she thought -
until she went to hospital, at 12 weeks, for a routine ultrasound scan. “On
my way to the appointment I realised that I was bleeding,” she says. “When I
got there they said they would go ahead with the scan and see what was
happening.”
When the ultrasound equipment was switched on, says Benton, “there was just
silence. No one said anything until I said, ‘There's nothing there, is
there?' And the doctor burbled and eventually said, ‘No, there's no baby'.”
For Benton and her partner, the loss of their longed-for second baby was a
tragedy - the scan picture showed that the foetus had stopped growing at six
weeks - but there was scant sympathy from the hospital staff.
“No one offered any condolences or said they were sorry for our loss,” she
remembers. “We were terribly upset, and we had to leave the same way we'd
arrived, walking through a waiting room full of women waiting for scans. I
felt awful, and the last thing these people needed was to see our devastated
faces.”
Benton was told that she could have her uterus emptied surgically -
“evacuation of the retained products of conception” or ERPC, in hospital
parlance - or she could go home and miscarry naturally. “I asked how bad
that would be and they said that it would be like a heavy period, so I
thought I'd go home and wait for that,” she says.
In fact, the next few days were agony. “It was horrendous,” she says of her
miscarriage three months ago. “It was like a birth. I had painful
contractions; it was labour. I almost went into A&E.”
Benton, who is 37 and lives in Cambridge, is one of a growing band of women
who feel that their miscarriages have been mismanaged by health
professionals.
“I was given misleading information on what the experience of miscarriage was
like. If I'd known how awful it was going to be, I'd have opted for
surgery,” she says. “There is no help for women who are miscarrying at home
- there should be someone you can phone or get advice from. I also object to
the terminology - ‘evacuation of the retained products of conception' sounds
horrible; they should call it something like surgical assistance around
miscarriage. And there needs to be a lot more understanding on the part of
health professionals that miscarriage is an emotional experience as much as
a physical one. It's a huge shock, a terrible loss, and it helps to have
those feelings at least acknowledged by the hospital staff with whom you
come into contact.”
In recent weeks and months Benson, and hundreds of others like her, have been
logging on to the parents' website Mumsnet to chart their experiences of
what can seem like the uncaring, insensitive face of the NHS - doctors,
nurses, midwives and protocols that appear to take no account of the pain,
physical or emotional, involved in miscarriage.
To judge from the Mumsnet comments,
health professionals often don't take account of the extent to which losing
a baby is a personal tragedy.
“We took up the campaign because we were shocked by the many tales of what can
only be described as heartlessness,” says Justine Roberts, co-founder of
Mumsnet. “Of course miscarriage is painful and there's no getting away from
that, but we feel that a few simple changes could make a big difference to
the level of trauma that miscarrying parents undergo.
“For example, some women have told us how they were left, while miscarrying,
in antenatal clinics and/or on labour wards, surrounded by pregnant women
and pictures of babies. It's very distressing for that to happen, and it
shouldn't be happening.”
Miscarriage tends to get headlines only when research emerges that promises to
reduce the toll - a study from Liverpool University last month, for example,
suggested that up to a third of pregnancy losses could be prevented by
steroids. But however successful developments may prove, there will always
be some miscarriages - and other studies, such as one this month from
Aberdeen University, which found that women who miscarry are more likely to
have difficulties in future pregnancies, stress the importance of treating
the women involved with compassion and understanding.
Mumsnet has put together ten recommendations for how pregnancy loss could be
better managed by the health service, and Alan Johnson, the Health
Secretary, has promised, in an online chat with Mumsnetters, to look
carefully at how changes could be made.
One common experience for women who have miscarried is encountering GPs,
midwives and nurses who assume that they are still pregnant. Eileen
Stackhouse, 26, received a phone call from a midwife at her local hospital
who wanted to know why she hadn't attended for her 12-week scan - seven
weeks after she had miscarried. “I couldn't believe they didn't know,” she
says. “It was really upsetting.” Even more astonishingly, Stackhouse
received a letter a few weeks later reminding her to attend an appointment
for a 20-week ultrasound scan. “How difficult can it be to let people know?”
she asks.
Stackhouse has had three miscarriages - one before the birth of her daughter
Sian, now 2, and two since. “I've never felt supported in any way,” she
says. “Hospital staff don't empathise with how you're feeling. To them it
seems like a routine thing. I know it's common, but that's why they should
be better at handling it. From the moment I had a positive pregnancy test
there was a baby in my mind - I was thinking of names, of how to paint the
nursery. Losing all that is terribly hard, and you need support.”
Another Mumsnet contributor, Kate Eaton, who had a late miscarriage at 21
weeks, says that a bit more understanding would have made a big difference
to her. “One doctor asked in my hearing if there were any results on ‘the
products of the miscarriage'. He was talking about my baby. There are lots
of people with that mindset - doctors who think that this is just something
that happens. There is also resistance to change because this isn't
something that you can measure on a balance sheet - it's not about
delivering live babies or saving lives; it's not something that you can set
a target for.”
Melanie Davies, consultant obstetrician and gynaecologist at University
College Hospital in London, describes the Mumsnet recommendations as “very
sensible” and points out that the Royal College of Obstetricians and
Gynaecologists, for which she is a spokeswoman, has issued guidelines
calling for similar measures. Some of the recommendations will be easier to
implement than others, she says. “For example, one recommendation centres on
the remains of the foetus, calling for couples to have a choice in how it is
disposed of, but in practice there may be no recognisable foetal tissue.”
On the question of the terminology that doctors use, Davies agrees that it can
often sound terrible - but she believes that attitudes are changing, and
argues that jargon takes longer to be phased out. “The issue is finding
something more acceptable, then getting it widely accepted. But that isn't
going to happen very quickly,” she says.
Davies agrees that doctors and hospital staff could, in general, do better
where miscarriage is concerned. “We have to try to see things in [women's]
context and interact appropriately,” she says, although she also maintains
that women nowadays are less willing to accept that pregnancy does not
always go to plan. “There is an expectation that every pregnancy will
produce a baby,” she says. “The problem is, we have got so used to being
able to control areas of our lives that we weren't able to control in the
past. Many women expect that they can stop contraception and will straight
away get pregnant and have a baby - but life doesn't work like that, because
we can't control everything.
“At least one pregnancy in six is lost. There is a higher proportion of losses
in older mothers - and these days we are seeing more older mothers.”
What is needed, says Davies, is a culture in which women hoping for a baby are
“informed but optimistic” about pregnancy outcome.
At the Department of Health, a spokesman says that the Mumsnet recommendations
are being looked into, and points out that the country's 250 early pregnancy
units were issued with revised guidance last year, including guidelines on
the provision of counselling after miscarriage.
Some of the stories on Mumsnet have been heartbreaking. One woman, who wants
to be known only by her first name, Susan, has reported horrendous
experiences through two miscarriages.
“The worst thing was, as I waited to go under the anaesthetic for a D&C,
the anaesthetist read what he thought were my notes, then said to me, ‘So
your baby is alive?'. He was looking at the wrong papers and thought they
were performing a termination. I was sobbing and begging him to check.
“When I lost the other baby, I was subjected to a horrible ultrasound scan
with an internal probe. The scan operator spent ages trying to work out what
he could see. I was lying there crying - then he asked me if it was a
planned pregnancy. It was unbelievably insensitive.”
Susan, 37, believes that if she and her partner had been more sensitively
treated, they might have continued trying to have a brother or sister for
their four-year-old. As it is, they have decided not to try for another
pregnancy.
“I'd love a new baby,” says Susan sadly. “But what I went through - what my
husband went through as well - was so terrible. We can't risk it happening
again.”
Ten steps to a caring NHS
The Mumsnet recommendations
1 GPs, early pregnancy units (EPU) and A&E staff should be trained
in communication techniques (including things not to say to women who are
miscarrying).
2 Access to ultrasound scanning facilities in cases of suspected
miscarriage should be easier.
3 Women undergoing miscarriage or suspected miscarriage should be
separated from women having routine antenatal and postnatal care, and women
terminating an unwanted pregnancy.
4 Waiting times, especially for women who need surgery, should be kept
to a minimum and women should not have to wait in antenatal or labour wards.
5 The surgical procedure “evacuation of retained products of
conception” (ERPC) should be renamed to be less confusing and upsetting.
6 Women having a miscarriage should have the different options
explained to them: “natural” miscarriage; medication to speed up the natural
process; and surgery.
7 Where miscarriage occurs in hospital, doctors should discuss with the
parents what they wish to happen to the foetus (ie, it should not simply be
disposed of routinely).
8 Follow-up appointments and/or counselling should be routinely offered
after miscarriage.
9 Information about pregnancy and miscarriage should be held centrally
so that all pregnancy-related appointments can be automatically cancelled.
10 Consideration should be given to routine blood tests for any
conditions that could cause miscarriage.
