Doctors believe little Sophie Burns was born with Goldenhar syndrome, a rare condition that affects just one in 500,000 children.

As well as facial defects, it can cause heart and respiratory problems and spinal abnormalities.

Miss Nellist, 19, realised something was wrong as her daughter struggled to take feeds.

"Her colour was changing - she was going blue when sucking on a bottle," she said.

Sophie was taken into the special care baby unit at South Tyneside District Hospital, and an examination revealed one of her nostrils had a narrowing in it.

She was transferred to the Royal Victoria Infirmary in Newcastle and two stents were put into her nostrils to widen them.

When that didn't work, doctors decided to give her a tracheostomy – an artificial opening into the windpipe – to help her breathe.

At one point, they had to give her a chest compression when she stopped breathing all together.

"It saved her life," said Miss Nellist, who is staying with her parents Bill, 45, and Deborah, 42, and sister Jade, 17, in Fuchsia Gardens, Hebburn.

She and her partner Neil Burns, 22, who also lives with the family, are on the waiting list for a home of their own nearby.

"It's a bit cramped, especially with all of Sophie's equipment," said Miss Nellist. "We're still trying to find room for her Christmas presents!"

Sophie's parents had to prove they could change her tracheostomy
tube and use equipment like a suction machine before she was allowed home.

She came out of hospital when she was five weeks old, but was re-admitted for a week last month with a chest infection.

Now five months old, she's on the mend and putting on weight, despite having to be fed through a tube.

"She's grown a lot bigger over the last few weeks and has built her strength up," said Miss Nellist, who is still waiting to give her daughter her first bottle.

"She's been much happier since the operation. She's laughing and smiling all the time now."

Miss Nellist was told at her 20-week scan that her baby may have curvature of the spine, caused by an extra piece of bone.

Doctors are still trying to identify Sophie's exact condition, as she may need further operations.

Miss Nellist said: "They think it's Goldenhar Syndrome because her symptoms fit most of it, but they don't want to say for sure because it is not exact.

"The staff at the RVI have been really good, trying different things to find out what's wrong."