When Neive was born, her parents had no reason to believe their baby girl was facing a serious heart condition. The pregnancy had been completely normal, and apart from a slightly blue nose and difficulties feeding, nothing initially seemed alarming.

But within just a few months, their world changed.

Neive began drinking less than her older sister Olivia had at the same age. She developed a strange cough, became increasingly pale and sleepy, and seemed unusually clingy. Then one day, her mother noticed that even her little arm appeared too weak to stay raised.

Concerned, she contacted medical services and was advised to take Neive to a walk-in centre.

What happened next was beyond anything her parents could have imagined.

When they arrived, Neive’s breathing was extremely fast and her heart rate was dangerously low. She was given oxygen and rushed by ambulance to Newcastle’s Royal Victoria Infirmary.

“She didn’t react to all the needles and examinations,” her mother recalled. “She just lay there, so still. I knew something was terribly wrong, but I never imagined how serious it was.”

A cardiac specialist from Freeman Hospital carried out urgent tests and scans. Within hours, Neive was transferred there.

By the time she arrived, her heart was barely functioning.

Neive was diagnosed with ALCAPA syndrome, a rare congenital heart condition in which the left coronary artery develops from the pulmonary artery instead of the aorta. As a result, the heart muscle may not receive enough oxygen-rich blood, potentially leading to severe heart failure.

That night, Neive’s parents faced one of the most frightening moments of their lives.

Their tiny daughter needed emergency open-heart surgery.

The operation lasted nine and a half hours.

“I remember asking the nurses if she was going to make it,” her mother said. “I was terrified. All I wanted was to stay beside her and know that she was still there.”

Fortunately, the family found an unexpected source of comfort through Scott House, run by The Sick Children’s Trust. Although they lived locally, the accommodation allowed them to remain only minutes from Neive while she spent weeks in hospital.

For six weeks, it became their home.

Her parents took turns staying beside Neive, resting and working from Scott House when they could. They also had to balance caring for Neive with being there for her big sister Olivia at home.

“I couldn’t imagine being at home and getting a phone call saying something had happened to Neive,” her mother shared. “Knowing I was only a few minutes away made it possible for me to breathe a little.”

Neive remained at Freeman Hospital for 12 weeks as she recovered from surgery and faced further challenges. She required prolonged breathing support and eventually needed a tracheostomy. Doctors also discovered that one of the valves in her heart was leaking, although the family was reassured that it may improve naturally.

Despite everything, Neive continued to surprise them.

Today, you might only know she had been seriously unwell because of the tube near her nose. She is crawling around, eager to pull herself up and start walking, and showing no sign of letting her difficult beginning define her.

“She is such a brave little girl,” her family said. “After everything she has been through, seeing her crawl around and smile with Olivia is something we never take for granted.”

For her parents, those ordinary moments have become the most precious ones of all.

“Every day with her feels like a gift,” they added. “We are just so grateful that she is here, growing stronger and enjoying being a little girl.”