High Peak pregnancy health campaigner makes breakthrough as MP calls for inquiry in Parliament

A High Peak woman who has spent more than a decade campaigning to improve care for a little-understood pregnancy complication which can cause baby loss and traumatic births has celebrated a breakthrough after the borough’s MP took up the cause in Parliament.

By Ed Dingwall
Friday, 15th October 2021, 4:27 pm

Mr Largan has called for a formal inquiry into how medical professionals and patients manage preterm prelabour rupture of the membranes (PPROM) – a condition where the waters break earlier than 37 weeks of pregnancy, posing serious risks to both mother and baby.

The call is overdue recognition for the advocacy, research and support work of Little Heartbeats, which has helped thousands of women all over the world since it was set up by Chinley resident Ciara Curran, who lost her first child, Sinead, in 2010 due to issues arising from PPROM.

Ciara said: “We’ve worked so hard just to get here, it feels like winning the lottery. We want the inquiry because we believe mums deserve more choices and better care.

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“A study by the UK Obstetric Surveillance System found that every day in the UK a new pregnant mum will experience PPROM between 16 to 22.5 weeks, and many are told they must terminate their pregnancy or they will die. Others are sent home and told to come back in two weeks or when they reach viability, without being told the risks.”

She added: “Our mums are not being heard, and some medical professionals are missing the best time to deliver. We have had babies become seriously ill, some have died, and some may have been better off if pregnant mums had been listened to. Very few are being offered perinatal support for their mental health, and many are suffering post-traumatic stress disorder.

“On the other hand, I now get mums sending me school photos of children who might not have been here if they hadn’t found support from Little Heartbeats.

“We are not saying that all these babies would have survived, but a lot of deaths could be avoided and families could be better supported whatever their situation. There is no consistent management plan.”

Ciara with some of the mums she has helped through the work of Little Heartbeats.

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Now a mum to Una and Siobhan, aged three and ten, Ciara has never forgotten the heartbreak of losing her oldest daughter, nor the experience of trying to understand how and why it happened.

She said: “The care I got felt like something from Fawlty Towers, it wasn’t what I deserved. I was never even told what had caused me to lose Sinead. It was only when I got access to my notes that I first saw the letters PPROM.

“A lot of the time it is simply explained as being a miscarriage, or written up as a similar condition like SROM, ROM or PROM. A lot of women may not even know they have had PPROM. It’s a complex condition, there aren’t any easy decisions and doctors don’t always know how to handle it.”

Ciara Curran with partner Phil Speakman and daughters Siobhan and Una.

Ciara’s work began with legal proceedings against those responsible for failures in her case and then in 2013 it evolved into Little Heartbeats, which has worked to deliver information to patients affected and work with NHS organisations and researchers to develop new models of care.

She said: “I promised Sinead I would change things when I left her. I am her voice to help others through this difficult time. I was told that lessons would be learned but after years of mentoring women through PPROM, we are failing to learn those lessons.

“It has taken 11 years of campaigning and Robert has been the first MP who has managed to make the effort to discuss my case and be our voice at this debate.”

Despite the struggle for support, Little Heartbeats has become a driving force for some significant developments in helping medical professions gain a better understanding of PPROM.

One of the care packages sent out by Little Heartbeats.

Ciara and other members of the group have worked with Royal College of Obstetricians and Gynaecologists to publish new clinical guidelines and a new patient information leaflet, after it had ceased production on earlier versions.

They have also linked with several university research teams to initiate projects investigating the causes of PPROM, its impact, how health workers respond to patients, and possible treatments such as stem cell patches.

Ciara said: “We raised more than £30,000 for one study, and it’s pioneering stuff which will prevent many cases of baby loss and preterm birth, but the reality is that it could take millions of pounds, which is why we are pushing for an inquiry.

“We need the government to start taking this seriously. Fundamentally, we need to start learning from these cases which are impacting women’s health and whole families. Our families are living with the impact of PPROM for the rest of their lives.”

Mr Largan raised Ciara’s story in a Commons debate on baby loss in September, and followed up by writing to Jeremy Hunt, who chairs the health and social care committee, to restate the case for an inquiry. He also called for investment in the maternity unit and antenatal clinic at Tameside Hospital.

The High Peak MP said: “It is amazing to see someone who has dealt with such loss respond with tremendous courage and compassion.

“There is a need for greater investment in midwifery, and better counselling for those parents that have suffered this terrible tragedy.”

In the meantime, Ciara is pressing on, seeking official charitable status for Little Heartbeats, and sending out free care packs to women going through PPROM, those with a baby in neonatal care, or who have sadly lost their baby after a PPROM pregnancy.

She said: “If anyone is going through this right now, or has been through this, know that you are not alone.

“We have helped save babies lives and we know the work we are doing is helping to prevent PPROM, but we need support.”

To learn more about the organisation’s work, go to www.little-heartbeats.org.uk.

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