When Ciara Curran’s first pregnancy ended at 21 weeks with the loss of her unborn daughter, she struggled to cope with depression, PTSD, and so many unanswered questions. “I was all over the place,” says the 48-year-old.
She had felt uneasy for almost two weeks before she lost the little girl she had already named Sinead. And, in the days before she went into premature labour, Ciara had pleaded with doctors and midwives for an ultrasound scan and the chance to be able to listen for her baby’s heartbeat.
It took two years and a successful pregnancy before she was finally able to process what had happened. Now, just over a decade later, Ciara gives thanks every day for her daughters Siobhan, 11, and Una, five, but she admits that she will probably never truly overcome losing her first child.
Now she is turning her ongoing grief into a mission of hope by founding the support group Little Heartbeats. Despite limited resources, and no medical training, Ciara has helped thousands of mothers-to-be whose waters have broken too early in their pregnancy – and raised thousands of pounds for vital research into preterm premature rupture of the membranes.
Doctors define PPROM, as it is known, as the waters breaking between 24 and 37 weeks. This happens in around three per cent of pregnancies and is a factor in as many as two in five premature deliveries.
When this happens at 24 weeks there is a good chance the baby will survive – and everything is done to maintain the pregnancy and delay premature labour. Before 24 weeks, as in Ciara’s case, it is known as EPPROM, or early preterm premature rupture of the membranes. In these instances, there is far more uncertainty.
Ciara is careful not to offer false hope, and she acknowledges that not all babies can survive, but some do. “That’s why we need more research, at the moment there are so many unknowns.”
In the meantime, advice and support from Little Heartbeats has helped hundreds of women navigate this medical maze and give birth to babies who thrive.
And if there is not a happy ending, would-be mothers have the comfort of knowing they did everything they could, as well as the support of others with experience of their heartache. “That is so important for mental health,” says Ciara.
One of the most common reasons for a woman’s waters to rupture is infection with Group B with streptococcus, usually a harmless bacteria carried by as many as 40 per cent of us. If it’s picked up, strep B is easily treated with antibiotics.
At around 16 weeks into her pregnancy, Ciara developed a urinary tract infection and her GP prescribed antibiotics. NHS guidelines advise that a sample should also be sent to a laboratory to be cultured, to check for strep B, and also E. coli, another common trigger for PPROM.
In Ciara’s case this didn’t happen, so she still can’t be sure if the urinary infection was to blame, but several weeks later she experienced a gush of fluid.
“I went to the GP and birth centre several times, and must have rung the main hospital five or six times, but everyone just kept telling me to stop worrying. I was told to use a sanitary towel and even to call an antenatal yoga teacher. It was my first pregnancy, so I didn’t know what to expect and I trusted them.”
After speaking to her mother, who insisted she get checked out, Ciara – who is one of nine children – became increasingly worried.
Finally, when she began to pass clots of blood, the birth centre told Ciara, from Whaley Bridge, Derbyshire, to make her own way to hospital, a 40-minute drive away. “I sat on the floor crying,” she recalls.
“When I did eventually get there, there was no urgency. The doctor tried four or five times to do an internal before telling me the cervix was closed, there was nothing wrong and he was going to send me home.”
Ciara had to plead to be admitted and two days later an ultrasound confirmed her worst fears. There was almost no amniotic fluid around her baby and she was told her baby would be severely disabled and advised to have a termination. “My baby was just written off.”
Ciara agreed an out-of-court settlement with the NHS for what happened, and the Trust promised lessons would be learnt, but she believes lack of guidance around how to treat ruptures before 24 weeks means women continue to be let down.
“Women are being told their baby has zero chance and they should terminate the pregnancy, but we know with the right care some do survive.”
To help women facing these heartbreaking choices, Little Heartbeats has sent out more than 2,000 “care bears” with messages of support and information about PPROM. Ciara encourages women to ask about complications such as infection, or a problem with the placenta or umbilical cord.
And, if they decide against a termination, to explore what can be done to maintain pregnancy because an infant’s chance of survival improves with every day labour is delayed.
Following her own experiences, Ciara has since worked as a lay adviser with the Royal College of Obstetricians and Gynaecologists, the National Institute for Health and Care Excellence, and King’s College London to improve patient information and guidance for medics and midwives. She has run marathons, braved parachute jumps and co-written and released a song with another PPROM mum to raise money for research.
One study, by scientists at University College London and Queen Mary University of London is looking at whether cells called myofibroblasts, which play an important part in wound healing, can be used to repair the amniotic sac.
Another, at Liverpool Women’s Hospital, is tracking women whose membranes rupture before 23 weeks to investigate how many women are affected, how many want to continue pregnancies, and whether antibiotics and steroids to accelerate development can improve infant survival.
Until these studies provide answers, Ciara and Little Heartbeats will continue to offer comfort and hope.