Broadchurch star Sarah Parish tells Kate Freud how, after the tragic loss of her baby, Ella-Jayne, she vowed to make a difference in her name.
It wasn’t until Sarah Parish – known for her roles in Mistresses, Cutting It and Merlin, as well as Broadchurch – was 35 weeks pregnant that she and her husband, actor James Murray, had any idea something was wrong. “I had a neat bump, I felt well, and the 20-week scan had been clear,” Sarah explains, “so when the consultant walked in, concerned that the baby was small for her dates, it came as a bolt from the blue.”
Sarah was induced immediately, but when the heart rate monitor showed the baby was in distress, an emergency caesarean quickly ensued. When Ella-Jayne was born she was given oxygen to resuscitate her, and blood transfusions. “It was just horrific,” Sarah recalls.
As their baby was whisked off to the paediatric intensive care unit, Sarah and James were left reeling in shock. The next day Sarah went to see Ella-Jayne, and there were signs something was wrong. She was very small and had broad, spade-like big toes and thumbs, a familiar sign of a genetic disorder.
Their daughter also had a hole in the heart and a defective valve, a common symptom of Rubinstein-Taybi syndrome, an extremely rare genetic condition affecting just 1 in 100,000 live births, which Ella-Jayne would later be diagnosed with. She was taken for surgery almost immediately.
“After the surgery we really felt that, though Ella-Jayne might have some challenges, everything was going to be OK,” Sarah says. There was an agonising eight-week wait for the results of the genetic tests – but the couple remained optimistic.
And to everyone’s surprise they were allowed to take their daughter home two months later. “The first time she came home was so exciting,” says Sarah, “but within 12 hours she had to go back for more surgery.” For Sarah and James it was “like reliving a nightmare” – they were back to where they had started. Ella-Jayne was allowed home again two months later but by this stage Sarah and James knew their role was as carers, and it proved to be both trying and terrifying at times. But Ella-Jayne seemed to be doing well over Christmas, taking her first bottle in the new year (though she was still fed through a nasogastric tube). Later that same night when Sarah went to check on Ella-Jayne she was cold, and despite the couple’s best efforts to revive her, they couldn’t. An ambulance came, and 10 days later there was a cremation for their daughter and a service held in the same church where the couple were married.
“My husband and I grieved in different ways, I think men and women do,” Sarah explains. “But I kept having to remind myself that it wasn’t like losing a healthy child, we had an extremely sick daughter, and we lost her. Our grief was huge, but we had something rational to hold onto.”
The couple took themselves to Cambodia and Vietnam for two months, working with disabled children, an experience that proved cathartic for them both.
Ella-Jayne died in the January, and despite Sarah’s age at 41, in the spring the couple found out they were expecting again. Understandably, it was a time of mixed emotions. “We were so happy but anxious. I worked throughout the pregnancy which proved a great distraction,” Sarah explains.
Her second delivery was equally harrowing; Sarah’s placenta was embedded in the uterine wall and she was told she might need a full hysterectomy as well as her bladder removed. Thankfully, Sarah woke up with a healthy baby, Nell, and her womb and bladder in tact.
Nell is now six, and brings a smile to her mother’s face just talking about her. “She’s got a huge character and she’s brilliant company,” Sarah beams. “She knows all about her sister and seems to understand.”
Following Ella-Jayne’s death, the couple had begun fundraising for the Southampton General Hospital PICU, a place where their daughter had received extraordinary care. “Before we had Ella-Jayne, my husband and I led very privileged lives. But when we saw what was involved in a ‘real job’ – doctors, nurses, midwives – it was a total wake-up call for us.” The couple spent hours with the staff at Southampton and they became like family.
In 2014, they set up the Murray Parish Trust in their daughter’s name and now work determinedly raising funds to support the extension of the PICU. Through their #2millionsteps campaign, they managed to get George Osborne to promise £2m to match their own fundraising goal.
So far the funds raised have gone directly towards paying for a full-time counsellor for parents, two new bed spaces and specialist equipment to transport critically ill children by air ambulance. As Sarah says, “there’s only one way to numb the pain of losing a child and that is to help other children. To try and help give them the future they deserve.” And if Sarah and James have anything to do with it, they’ll keep working until they do.
For fundraising events or to support the charity, visit themurrayparishtrust.com
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