The baby diagnosed with lethal heart condition after photos showed he was turning blue

Saved by a photo shoot: Baby diagnosed with lethal heart condition after family got their snaps back – and realised he was turning blue
Danny Davies looked slightly purple when he was born, but doctors assumed he was simply bruised by his arrivalHad professional pictures taken of him at just a few weeks oldWhen the snaps came back, his parents noticed the purple blotches had worsenedTests reveled he had low oxygen levels caused by rare heart defect

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UPDATED:

16:36 GMT, 18 December 2012

When Neil and Fran Davies booked a professional photography session, they had hoped to get treasured family snaps of their son Danny at just a few weeks old.

They never imagined it would show up tell-tale signs that he was seriously ill.

Danny had appeared the picture of health when he was born and no-one was too worried that he looked slightly purple – assuming he was simply a bit bruised by his arrival.

Danny Davies had appeared the picture of health when he was born and no-one was worried that he looked slightly purple - assuming he was simply a bit bruised by his arrival

Danny Davies had appeared the picture of health when he was born and no-one was worried that he looked slightly purple – assuming he was simply a bit bruised by his arrival

But when the photos were developed, his parents noticed the purple blotches on Danny's skin had got worse and his hands and feet looked almost blue.

This sparked a chain of events that ended in life-saving treatment at Southampton General Hospital, where Danny was diagnosed with the rare heart defect pulmonary atresia with ventricular septal defect (PA-VSD).

This is a very rare congenital malformation of the heart where the pulmonary valve fails to develop properly, obstructing the flow of blood from the heart to the lungs. This is coupled with a defect in the lower chamber walls dividing the left and right-hand side.

Two days after the photo session,
Mrs Davies mentioned her concerns about the blotches to a community
nurse who sent them to their GP to get Danny's oxygen levels checked.

Unfortunately, the doctor's surgery
had only an adult's machine available so when Danny's oxygen levels were
reading at 50 per cent (rather than the expected 97 per cent) – it was
assumed it was because it wasn't a children's device.

But when the photos were developed, his parents noticed the purple blotches on his skin had got worse and his hands and feet looked almost blue - and he was diagnosed with a rare heart disorder

But when the photos were developed, his parents noticed the purple blotches on his skin had got worse and his hands and feet looked almost blue – and he was diagnosed with a rare heart disorder

To be on the safe side, Danny was then sent to St Richard's Hospital in Chichester so a proper test could be performed. After two hours of trying to get a normal reading, he was sent to the paediatric cardiac centre at Southampton General Hospital.

Mrs Davies, 23, from Felpham near
Bognor Regis in West Sussex, said: 'At this point, we were remarkably
calm and still didn't think it was that serious.

'The
next thing we knew we were ushered through to a private room and told
Danny had a very rare congenital heart condition and was critically ill.
He was struggling to get oxygen around his body and we were told the
next 24 hours were critical.

'We couldn't quite believe how
quickly he'd deteriorated: we went from thinking our son was a healthy
newborn to being told his life was in danger within the space of a few
hours.

'In fact, we were told that if we'd
taken 15 minutes longer to get to Southampton, Danny might not have made
it – it was almost unbelievable.'

Within two hours of arriving, Danny was in theatre as doctors tried to deal with the rare heart condition.

The condition had affected Danny's ability to get oxygenated blood around his body, which is crucial for survival.

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Danny today with his mother Fran

Danny, here with father Neil and mother Fran, may need a lung and heart transplant in the future

One of the nurses caring for Danny, Pam Modelly, explained: 'These were some of the worst nights the team had ever experienced as his deterioration was so unexpected. He came in looking like a healthy little boy and went downhill so quickly. ECMO really was the last resort and gave us time to allow Danny's body to recover.'

After seven days Danny came off the machine but remained in hospital for another four months, undergoing further surgery to reconstruct his heart and help it work more efficiently.

Finally, in October 2010, Danny was allowed to return home. He is now two, has a little sister called Sky and has a new home more suited to his care.

But he has now undergone a further 12 procedures and will need to come to the cardiac ward at Southampton throughout his life.

He has also been referred to Great Ormond Street Hospital in London to see if further treatment, including the possibility of a heart and lung transplant, will help him.

'We realise what Danny has isn't curable but Southampton is doing all it can to give him the best life they can, and we're so pleased to have them,' Mrs Davies said.

'We expect to have many more visits to the hospital but we know we are in safe hands and Danny is given the best care we could hope for.'

Kevin Roman, consultant in paediatric cardiology, said: 'Danny is one of the most complex patients we have ever seen and has been through an incredible journey in his short life.

'He's such a fighter and has quite a fan base here. We will continue to do everything we can for Danny and give him the best outlook in the coming years.'