By Kim Willis

The moment Darcie was born, her mum Lydia Willoughby knew something was wrong. Instead of a newborn cry, she arrived silently before letting out a chilling, high-pitched noise.

Lydia, 25, and partner Ben, 27, watched helplessly as their child was taken to neonatal intensive care. Doctors couldn’t explain the gasping sound she made. To Lydia, it sounded like her baby was choking.

“Doctors put her on oxygen and every time they tried to take her off she’d stop breathing,” says Lydia. “They wanted to transfer her from Poole Hospital to Southampton for more specialist care.”

Lydia, from Dorset, asked to go in the ambulance with Darcie but was talked out of it because doctors did not expect her child to survive the journey.

“I’d only just given birth and now they were telling me she might die,” she says. “Ben and I arrived in Southampton to find her airways were being kept open by tubes down her nose.”

Darcie, now aged three-and-a-half, was diagnosed with vocal cord paralysis and a floppy windpipe.

As well as being used for speech, the vocal cords stop food and drink entering the windpipe. But there was a disruption to Darcie’s nerve impulses in her voice box, resulting in paralysis of the vocal cord muscles.

“She had a tracheotomy when she was six weeks old,” Lydia says. “It created an artificial airway but doctors warned me it was highly unlikely I’d ever hear her say a word. She’d be mute.”

Lydia was heartbroken, fearing her daughter would never say ‘mummy’ or ‘I love you’.

She and Ben started learning sign language, thinking it would be their only way into Darcie’s world.

But the fear around the tube in Darcie’s throat was overwhelming.

“Instead of enjoying her first moments I was freaking out that she’d pull out her trachy and stop breathing while my back was turned,” says Lydia.

Despite this, Lydia kept saying “mummy” around Darcie, hoping she might be encouraged to try. And eventually, it worked.

“At first she just smiled at me but then, at 15 months, she said it. I was so happy I burst into tears. I had prepared myself to never hear her say it, but there it was, clear as the sky was blue.” The tracheotomy needed continual checks however, and Darcie hated anyone touching it. She needed sedation each time and Lydia gave her a doll which also had a tracheotomy to make it all seem more normal.

Lydia says: “The doctors kept attempting to remove it to see if she could breathe on her own. One time she lasted 43 minutes, but ultimately she panics and turns blue. Most people breathe subconsciously but for Darcie, without a trachy, it has to be a conscious thing and that is not sustainable. And so the trachy stays.” When Lydia became pregnant again she feared her new baby would have the same problem, despite doctors’ assurances it was not genetic. But when Hunter was born in November 2015 and immediately made the same terrifying noise, Lydia and Ben knew he had the same condition.

“Darcie’s specialist confirmed Hunter had vocal cord paralysis and a floppy windpipe too, and at four months old he had a trachy fitted as well,” says Lydia.

But amid the latest setback for the couple, Darcie gave them hope. She had learned to count to 10 and was forming whole sentences.

Because of the trachy, Darcie’s speech was a little distorted. But it didn’t stop her. One day she said the three little words her mother hadn’t dared dream she’d hear – ‘I love you’.

Lydia says: “The first time she said it I think I screeched. She was a talking miracle! The doctors are baffled as to how Darcie can speak, but eight months ago she was the first child with a tracheotomy to be discharged from speech and language therapy – she didn’t need it.

“She struggles with ‘s’ sounds, which come out more like an ‘h’ sound, but we can understand her.

“She gave us hope that Hunter would defy expectations too.”

Both children continue to depend on a tracheotomy. Having two children who can’t breathe independently has not been easy but Lydia and Ben have been supported by staff at Julia’s House Children’s Hospice.

Now, at 22 months old, Hunter has followed in his big sister’s footsteps. Just a few weeks ago he said ‘mummy’ for the first time.

“There is no greater sound in the universe than the sound of our kids saying mummy and daddy after all we’ve been through,” says Lydia. There are 49,000 children in the UK living with conditions reach adulthood, which that mean they m is the equivalent of one child in every school. Hospic such as Julia’s House are not just for palliative care.

They provide respite and services for any family living with life-limiting or life-threatening

Lydia says: “We’d be lost conditions. without them. They give the kids somewhere safe so Ben and I can recharge our batteries and be the best parents we can. “I was so crushed when doctors said our children independently. Every time would never speak or br they say a word they take my own breath away.” If you care for a child with a life-limiting or life-threatening support, contact UK charity condition and w Together for Short Lives.

0808 8088 100 or visit Call the free helpline o www.togetherforshortlives.org.uk

FAMILY Ben, Lydia and the kids