Norwich father singing from his heart after daughter’s life-saving surgery

With a metal wire holding her rib cage together, baby Amelia is smiling again after life-saving surgery fixed her deformed heart.

The 20-month-old was born with a rare heart condition which meant she stopped growing after six months and did not start to crawl or walk until a long time after other babies her age.

Surgeons had to open her rib cage and stop her heart beating to fix it in a five-hour operation at Great Ormond Street Hospital (GOSH) in London.

Now, catching up on lost time, she is toddling around her home on Tolwin Walk, off Sprowston Road, Norwich, and parents Julian and Tina Hill are determined to re-pay the children's hospital for all their work.

Mr Hill, a freelance TV editor, is planning to raise money by attempting to break the world record for continuous karaoke in April when he sings for 24 hours.

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Amelia was born on April 28 2010 at the Norfolk and Norwich University Hospital with a heart problem called Tetralogy of Fallot which reduced the amount of oxygenated blood her heart could pump around her young body. She needed an operation to have a chance of surviving beyond one year.

Mrs Hill said they had no idea of the problems they would have to overcome after Amelia was born. 'We were assuming we were having a healthy baby,' she said.

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But 12 hours into her life she had difficulty feeding and doctors thought water was trapped on her lungs. They took her for an x-ray and at 2am on April 30, the Hills discovered there was a hole between the chambers of Amelia's heart.

It meant her heart was having to work extra hard just to keep her alive.

'It was a bit of a mess,' said her dad. 'They said we had a year.'

Six months later in October Amelia stopped growing - her body was using all its energy to keep her heart beating - but doctors did not want to operate until she was bigger.

The couple arranged for an operation at GOSH shortly before their daughter's first birthday but it had to be cancelled twice. Finally surgeons operated.

'They said she might not survive,' said Mr Hill. 'No one wants to hear your child might not wake up, do you still want to go ahead? It was the worst thing in the world leaving her there. It was the lowest moment in my whole life.'

His wife added: 'We had to say goodnight watching her being put to sleep. It was very hard. But I felt a sense of - she is in the right hands. We had faith in the doctors.'

With pacemakers strapped to her body and wires from her chest, Mr and Mrs hill kept a six-day vigil at their daughter's bedside as she gradually recovered from the operation.

'She was getting more and more awake but then you have sudden drops,' he said, 'There are lots of things that can go wrong.'

Six days after surgery Amelia was well enough to come home to Norwich where she celebrated her first birthday on the weekend of the Royal Wedding dressed as a princess.

Dad said: 'It was a huge relief going home. I felt convinced she was fixed. We had a year of knowing her heart was not working.'

Amelia began playing catch up with other babies, and although she small for her age, she learned to walk soon after beginning to crawl and is now learning her first words.

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