Not long after Bethany Hardy’s daughter was born, she felt something was wrong with her new baby.

Nancy’s head was a strange shape and much larger than her body, and she struggled to lift it.

By the time she was nine months, her parents, from Leeds, were seriously worried about their child.

Nancy was a year old when she was eventually diagnosed with sagittal craniosynostosis, a rare condition where the skull does not grow properly – but the delay meant she had to undergo more invasive surgery.

She had six operations, including blood transfusions and a skin graft, and spent a month in hospital – but Bethany believes if she had been diagnosed sooner, the treatment would have been less traumatic.

Recalling the first few months after Nancy’s birth, Bethany says: “She really struggled lifting her head, tummy time, that kind of stuff, because her head was a lot larger than her body.

“By nine months her head was on the 98th percentile but her body was on the 24th, which straight away kind of rings alarm bells because they should all be in line.”

Nancy was referred for an X-ray, but her parents instead decided to book a private consultation at Great Ormond Street Hospital in London.

Specialists were able to identify Nancy’s condition, which is caused by parts of the skull fusing together before birth, merely by visual observation and she was then offered reconstructive surgery on the NHS.

“Her head could only grow forwards and backwards, it wasn’t circular like a brain, so they put part of the skull at the side to make her a more normal-shaped head,” explains Bethany.

Her daughter needed further surgery after she developed an infection.

An earlier diagnosis would have made her treatment more straightforward, Bethany, from Yeadon, believes.

“If she was diagnosed before six months, she could’ve had small surgery, 45 minutes to an hour, which is still heartbreaking as a parent and you don’t want to go through, but it’s nothing compared to what she has been through.”

Nancy, now two, is now recovering well at home but still bears physical and mental scars from her long stay in hospital.

The family are now raising awareness of craniosynostosis and its signs, and promoting the importance of early diagnosis and intervention.

“She goes to ballet classes and when they give stickers at the end, she can’t take them because it reminds her of that. She sees people in blue and she’s terrified, she’s damaged from all of it.

“But she’s an amazing little girl and she’s happy.”

Listen to highlights from West Yorkshire on BBC Sounds, catch up with the latest episode of Look North.