Sarah Parish took a month-long 'hard labour' trip to Cambodia after baby heartache

Speaking to The Sun, Sarah said as she underwent the ultrasound, she experienced that "horrible thing of, ‘Why aren’t they speaking?’"

"The obstetrician didn’t have a great bedside manner," she explained. "He was like, ‘Mmm, the head’s very small. Have you been taking drugs? Are you an alcoholic?’ I went, ‘No. Just what’s going on?’"

The medical team were not sure what the problem was with baby Ella, and decided to deliver her via an emergency c-section. She gave a 'small whimper' and was put in an incubator, before some 15 people ran into the delivery room - Sarah thinks to "bring her back" to life.

"She had lots of blood transfusions and I was throwing up everywhere," she said.

When Ella-Jayne was stable some hours later, Sarah and James were able to get a proper look at their newborn little girl, who Sarah describes as "perfect" and with a "face like a porcelain doll".

But it was those doll-like looks that the couple would later be told were a symptom of Rubinstein-Taybi syndrome, an extremely rare genetic disorder which is thought to occur in just 1 in 100,000 live births.

Ella-Jayne was allowed to go home 4 months after her birth – a moment Sarah says was when she "started to become a mummy". It was a short lived euphoria though, as the hospital called and said that a scan result meant that Ella-Jayne needed to go back in for urgent surgery.

"I’d bonded with her and I had to give her over again," the actress explained.

The surgery did not go well – the medics struggled to get Ella-Jayne off the machine that was working her heart, and they couldn't close her chest. She then developed an infection.

Sarah says her little girl was "never the same" after the op, and the stress and trauma caused the new mum to "lose the plot", as she describes.

"I really fell apart. I obviously had very, very bad postnatal depression. And I had to go back to work."

Ella-Jayne "nearly died so many times" and the couple were repeatedly warned by their consultants that it could be the end.

They describe themselves as "closing off" to the rest of the world as they focussed all their energies on their very sick little girl.

"We felt like kids," Sarah said. "We didn’t know what we were doing. You’re just trying to keep her alive."

There were some light moments though: "Once she laughed," Sarah remembered.

"She was fun," agrees her dad, James. "And at times very alive and curious."

Shortly after Christmas 2009, Ella-Jayne seemed to rally. Having never been properly fed other than through a tube, she suddenly took to 'gulping' down milk from a bottle.

“We were like, ‘Oh my God, this is it. You’ve done it.’ She’d got the strength,” says Sarah.

But tragically, Ella-Jayne died that very night, and although her devastated parents describe the period as hell, Sarah says she would not change it.

The pair decided to leave the UK shortly after, and spent a month doing manual labour at an orphanage in Cambodia. James says the choice was either that or "drink ourselves to death in a pub".

Now, they are proud parents to 6-year-old Nell, born just 10 months after her sister's death, and in Ella-Jayne's memory, and to help other babies and families who are going through similar experiences as them, the family have pledged to build a dedicated emergency and trauma unit for children in Southampton.

The couple have already raised £300,000 to expand the Paediatric Intensive Care Unit and add more bed spaces at University Hospital Southampton, and their new project, #twomillionsteps, which aims to raise £2 million in 2 years, was one of three chosen by George Osborne in the 2016 Spring budget to receive matched funding.

"Our main priority right now is major donors," Sarah says, "and it’s important for people to know that if your child is in a car accident from as far as Oxford or the Channel Islands and they’re critically ill, then this is where they’ll go."

Sarah admits that working on the project and going back to the hospital where Ella-Jayne spent so much of her tragically short life is tough.

"You see the desperate look on the faces of other parents," said Sarah.

Her husband, however, takes a different view: "No," he countered, "It’s the hope."

What a heartbreaking story - but what an amazing legacy little Ella-Jayne will leave behind with this much-needed trauma centre.

You can find Sarah and James' fundraising page here.

Images: The Murray Parish Trust

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