Woman sets up charity to help thousands of mothers-to-be after heartbreaking baby loss

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 felt uneasy for almost two weeks before she lost the little girl who had already been named Sinéad. And, in the days before she went into premature labor, Ciara pleaded with doctors and midwives for an ultrasound scan and the chance to hear 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 ten years later, Ciara gives thanks every day to her daughters Siobhan, 11, and Una, five years old, but she admits that she probably won’t be able to lose her first child.

Now she is turning her ongoing grief into a mission of hope by founding the Little Heartbeats support group. Despite limited resources, and no medical training, Ciara has helped thousands of mums-to-be whose waters have broken too early in their pregnancy – and raised thousands of pounds for vital research into premature rupture of membranes time.

Doctors define PPROM, as it is called, as the waters breaking between 24 and 37 weeks. This occurs in about three percent of pregnancies and is a factor in as many as two out of five premature deliveries.

When this happens at 24 weeks there is a good chance that 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 called EPPROM, or premature rupture of membranes. In these cases, there is much more uncertainty.

Ciara is careful not to offer false hope, and acknowledges that not all children can survive, but some do. “That’s why we need more research, at the moment there are so many unknowns.”

Meanwhile, advice and support from Little Heartbeats has helped hundreds of women navigate this medical maze and give birth to successful babies.

And if there is no happy ending, mothers will have the comfort of knowing that they did everything they could, as well as the support of others who have experienced their heartache. “That’s so important for mental health,” says Ciara.

One of the most common causes of a woman’s water breaking is an infection with Group B streptococcus, a harmless bacteria that as many as 40 percent of us normally carry. If caught, B strep is easily treated with antibiotics.

At about 16 weeks into her pregnancy, Ciara developed a urinary tract infection and her GP prescribed antibiotics. NHS guidelines recommend that a sample should also be sent to a laboratory for culture, 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 urine infection was to blame, but a few weeks later she got a drop of fluid.

“I went to the GP and the birthing center several times, and I must turn the main hospital five or six times, but everyone told me to stop worrying. I was told a sanitary towel used and even called a prenatal 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 be checked, Ciara – who is one of nine children – became increasingly worried.

Finally, when she started to form blood clots, the birth center told Ciara, from Whaley Bridge, Derbyshire, to make her own way to the hospital, a 40-minute drive away. “I sat on the floor crying,” she recalls.

“When I finally arrived, there was no urgency. The doctor tried four or five times to do internal before telling me that the cervix was closed, nothing was 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 was advised to terminate it. “My baby was just written off.”

Ciara agreed an out-of-court settlement with the NHS over what happened, and the Trust promised lessons would be learned, but believes a lack of guidance on how to treat ruptures before 24 weeks means women will continue to be let down.

“Women are being told their baby has no chance and they should terminate the pregnancy, but we know with the right care some will 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 termination, explore what can be done to maintain the pregnancy because the chances of the baby’s survival will improve with each day of labor.

After gaining her own experience, Ciara has since worked as a lay consultant with the Royal College of Obstetricians and Gynaecologists, the National Institute for Health and Care Excellence, and King’s College London to improve patient knowledge and guidance for physicians and midwives. She has run marathons, pushed parachute jumps and co-written and released a song with another PPROM mother 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 role in wound healing, can be used to repair the amniotic sac.

Another, at Liverpool Women’s Hospital, is tracking women who rupture their membranes before 23 weeks to investigate how many women are affected, how many want to continue with pregnancy, and whether antibiotics and steroids to accelerate development and improve infant survival.

Until these studies provide answers, Ciara and Little Heartbeats will continue to bring comfort and hope.