Ireland’s maternity services are once again under the spotlight, as an overwhelming number of callers to RTE Radio One’s Liveline described difficult experiences of the system.
Women told of being dismissed and humiliated, and a minority told of severe injuries to them or their baby. They were all over the country and they had given birth as recently as weeks ago and as long ago as decades.
While many practitioners in the area have found the focus on negative experiences demoralising, the stories have not come as a surprise.
In her research, Dr Maeve O’Connell, a nursing lecturer at RCSI University in Bahrain says that 80% of women in a Swedish study experienced a fear of childbirth during their pregnancy, while about 5% experience a debilitating phobia.
Up to six per cent of women are diagnosed with post-traumatic stress disorder after giving birth “similar to what war veterans experience,” she says, while 30% experience some level of birth trauma.
O’Connell acknowledges that hearing the stories is not easy for healthcare professionals, but she is adamant that women must be heard.
“It’s not a personal attack but a subjective experience of the person and that needs to be respected.”
“The majority of women have a positive birth experience, 70% have a positive experience. But 30% experience birth trauma and we need to value those women’s experience and thank them for speaking out. It’s important that we acknowledge their experiences are real and try and respond to them.”
While some of the women who spoke on Liveline had been through major traumas like losing a baby or being seriously injured, the majority of calls were from women who had a healthy baby but felt they were not listened to and their input was dismissed.
Consultant obstetrician Dr Keelin O’Donoghue works in pregnancy loss at Cork University Maternity Hospital and has been leading the national standards for bereavement care.
She was not surprised by the revelations on Liveline either.
“I see people all the time with negative previous experiences of pregnancy loss and I’m familiar with hearing stories around communications, trust, and listening.
Dr O’Donoghue’s work in this area hit the media recently with reports that doctors were to be given acting classes to train them in how to appear empathetic when delivering bad news. However, she says, it’s more nuanced than that.
“Healthcare professionals need to be more aware that while the words and language we use are important, you have to mean it. It’s not about learning phrases, you can teach people what to say but there has to be sincerity in that.”
Her unit sees people at a particularly awful time in their lives.
“We see loads of people. They see one of us, once, ever. And with pregnancy loss you have one chance to get it right.”
While communication is certainly an issue, along with resources, she believes the adversarial nature of the system when tragedy strikes leads to an atmosphere of risk and fear.
“Modern healthcare demands excellence. There is an atmosphere of fear and accountability that means you can’t always be your best or most natural self. Doctors and midwives blame themselves hugely when things go wrong and that impacts their work on the next case.”
She also points out that the definition of a negative outcome depends on who you’re talking to.
“We as doctors focus on certain types of outcomes. My bad outcome means a baby going to the unit, a brain injury, or death of the woman or her baby. A woman’s scary outcome could be an episiotomy, a Caesarean section she didn’t want to have, an infection… what I think is a bad experience isn’t what you think is a bad experience. So we can be delighted that we saved the child but she is traumatised because nobody told her what was going on.”
Sometimes, she says, it’s about how you pass over the information.
“Sometimes you must spell out ‘if I do not to do this X will happen’, but you have to communicate that in a non-scaremongering, non-threatening way… you should be able to bring people with you and continuity of care makes that easier.
“If I know the woman, if she’s met me at appointments or I’ve got a really good handover from a midwife who’s spent 12 hours with her… I can bring her with me.”
Having worked in the UK where most women are seen in birthing centres or midwife led units with continuity of care, she says every woman who is not a high risk pregnancy should be on something like the Domino, a midwife led scheme available in some Irish maternity hospitals, which means women are seen before, during and after birth by a small team of midwives they get to know. However, she acknowledges that it is a question of resources.
NATIONAL MATERNITY STRATEGY
A choice of care pathways is one of the key focuses of the first National Maternity Strategy, launched to great fanfare in 2016 by then Health Minister Leo Varadkar after high profile tragedies in the maternity system but which is underfunded and “limping along” according to O’Donoghue.
Focus on the strategy has been lost with the debacle around Cervical Check and the introduction of termination of pregnancy, while it has been starved of funding, with no money available to introduce new elements in 2019.
“It needed something like E50m and it got E4m. We are not getting the funding to do it,” she says.
The Association for Improvement of Maternity Services in Ireland was involved in developing the National Maternity Strategy. Its chair, Krysia Lynch, sees the strategy as crucial to changing the culture.
“Just over half the funding has not been given, it was supposed to be ring-fenced for maternity care but it’s not, it’s being diverted.
“What the strategy was supposed to give was equal access to evidence based care for all women around the country,” she says.
“The evidence shows that choice is safer, giving women the choice of home births or community based care is safer, but there is a lot of money in obstetric care. Women who are low risk and could be cared for by midwives are going to high risk providers who can’t do that.”
Lynch also criticises the adversarial system around negative outcomes.
“Legal and insurance issues are driving care, not evidence based practice. Defensive practice is much more conservative. The backlog of cases is enormous and a huge percentage of payouts from the State Claims Agency is obstetrics.”
Similar to O’Donoghue, she favours a system that would allow agreed standard compensation to be paid to families who need support after birth injury.
However, resources and policies are not at the root of the current controversy, she believes.
“All of the stories had one thing in common – that people weren’t listening to them.
“Women aren’t listened to because people aren’t trained to listen. You have to enable their story to come into your space.”
“Joe [Duffy] listened without judgment. He didn’t invalidate their stories by saying ‘well, you had a healthy baby’, or try to balance them with good stories. He profoundly managed to open the space without having to counter argue but it shouldn’t be up to the national broadcaster to offer this space.”
She is critical of Your Service Your Say, the HSE’s reporting mechanism, because someone’s story “disappears into the bowels of the HSE” with no satisfactory result in most cases.
“There was one positive story on Liveline and it was about the Coombe’s Birth Reflections Midwife – the caller told her story to the birth reflections midwife and was listened to”.
The birth reflections service is not available in all hospitals.
The HSE has apologized to women who called Liveline and directed them to Your Service, Your Say.
‘I felt like an animal’
*Mary, 40, is a black woman of African origin, and has had three pregnancies in Ireland. She spoke on Liveline about her first pregnancy, in which she experienced “hostility” from hospital staff and was told during an antenatal visit “this child isn’t going to give you citizenship”.
“My partner and I are both professionals, we had decent jobs and we weren’t here seeking asylum. They would have had that information on our files.”
While she believes her experience of the system in each of her pregnancies has been tainted by racial discrimination, one thing she has in common with many of the other Liveline callers is the experience of not being listened to.
In her second labour, she was sent home from the hospital, where she gave birth unassisted, while her shocked three year old watched in distress.
“Afterwards I was in total shock and I couldn’t explain the experience or the emotions I was having, and I was dismissed by a consultant telling me I shouldn’t be acting up because African women give birth by themselves at home.”
The shock of the experience sent Mary into a depressive spiral, bringing up deeply held trauma from her childhood, part of which she spent in apartheid South Africa.
She lost her third pregnancy, which is the subject of an ongoing medical negligence case, but her experience of a long term hospital stay on that occasion has been deeply damaging. She spent weeks in a coma and was left unwashed for periods of time, as some staff refused to wash her, using racial epithets to refer to her.
*Mary’s name has been changed at her request. Her identity is known to the author.
‘I’ll never forgive them’
Cat Hogan, 40, is mother to two boys. When she began having labour pains at 34 weeks in her second pregnancy she presented to hospital, but was told to go home. She refused.
“They pegged me as a nuisance, but I was having pains, I was flushed in the face, I had dropped… I wasn’t being fobbed off.”
Her waters broke the next day but she was told repeatedly that she was not in labour.
“The pains were getting worse and I just started thinking if this isn’t labour then what’s going on? Am I dying, is the baby dying?”
After two days her contractions were now coming every ten minutes but a midwife told her to go home, take a valium and have a bath.
“The consultant talked about me, not to me. I was 34, I knew what was happening, it was my second baby.”
Against the consultant’s directions, a midwife brought her back to the birthing room.
“When they examined me they realised I was ready to rock and all hell broke loose. There were nine people in the room within ten minutes, there was no time for pain relief.”
“Many a night I lay in bed after he was born and thought about what would have happened if I had gone home like they said. Imagine if I had been 19 years of age on my first baby and followed that advice? They pegged me as a troublemaker because I didn’t follow the advice, and I’ll never forgive them for it.”
‘Like a scene from the Magdalene sisters’
Jen Hogan has seven children and has had four miscarriages.
Her first miscarriage was a devastating experience, made worse, she says, by the “cold and cruel” attitude of the doctor.
“I started bleeding at home and I had read something somewhere about ‘putting in a stitch’ so I rang an ambulance. The paramedics were very kind but when I got to the hospital and asked could they do a scan the doctor just said, oh, we could do a scan now and find a heartbeat and sure the foetus could be dead in the morning, and walked off.
“I was just left there, standing in the hospital bleeding, with my husband. We ended up going to another maternity hospital in Dublin on my GP’s advice, they did a scan but couldn’t find a heartbeat and I went there for the D&C.”
She says they were kind in a difficult time but her own hospital did not engage further.
Putting the experience down to the attitude of just one doctor, she chose to attend the original hospital on her next pregnancy.
Her first labour had been very fast, so she knew there was no time to waste, but despite telling midwives this, she was sent home, and had to turn the car around just minutes later when her waters broke.
She asked for the epidural but was told she didn’t need it yet.
“The midwife said to the other one coming in ‘oh we can hear her down the corridor, she’s a bit of a drama queen’.
“It’s very scary when nobody is listening. I could feel the baby crowning and they still didn’t believe I was in labour.
“The head was coming out and they made me get off the bed to change the sheets in case the doctor came in and saw a mess.”
“I was terrified, powerless, humiliated… it was like a scene from the Magdalene Sisters. There was no consideration for me as a woman in distress.”
She was treated for postnatal depression afterwards and eventually her dream of having a large family returned, but on the advice of her psychiatrist she attended a different hospital in her next and subsequent pregnancies.
“I attended Hugh O’Connor on the subsequent five births and it makes such a difference when you have somebody who listens to you.”
Published in the Sunday Business Post, 9 May 2019