By Pamela McGowan Health reporter

Last updated at 09:00, Saturday, 30 June 2012

Born with a little known but life-threatening condition, Olly Tinnion was given just a 50:50 chance of survival.

Baby Olly with mum Sophie

He made it through the crucial first eight hours, but continues to fight for his life in hospital – reliant on machines to keep him breathing.

At one point parents Mike and Sophie, of Windsor Road, Penrith, had to say their last goodbyes after being told he wouldn’t make it through the night.

Eight weeks after his birth and he is still fighting, though the future is still anything but certain.

His family are now speaking out to raise awareness of the condition – called Congenital Diaphragmatic Hernia (CDH) – and urge people to back calls for more research.

CDH is a hole in the diaphragm, the muscle under the lungs that is responsible for breathing. As a result other organs, such as the stomach and intestines, can move up through the hole, squashing the lungs and preventing the them from developing.

It affects about one in 2,500 babies, yet remains relatively unknown.

Mike, 38, who works at Iggesund Paperboard in Workington, said they found out about the problems when wife Sophie, 26, went for her 20-week scan. “Our oldest son Sam, who’s two-and-a-half, was born with a cleft lip. We found out about that at the scan so we were already a bit worried to start with.

“This time it turned out to be something quite major.”

Sophie was immediately referred to specialists at Newcastle’s Royal Victoria Infirmary (RVI), who carried out in-depth screening throughout her pregnancy.

They arranged to induce her on May 1, three weeks prior to the due date, in Newcastle, where they would have access to specialist equipment.

Olly was born on the morning of May 2 and taken straight to special care as planned.

Mike said: “With CDH we were told babies either survive or don’t survive in the first few hours, so we knew it was crucial.

“For the first six to eight hours he was fine, but then he had some complications. By that same evening we were pretty much told he wasn’t going to make it. We got him baptised that night. It was an emotional time,” said Mike.

Doctors said the last resort was to transfer him to the city’s Freeman Hospital, where they had a specialist heart and lung life support machine called an ECMO.

He was on the machine for about four weeks while doctors waited for him to get strong enough to undergo surgery, which can’t usually be performed while on the ECMO. But Olly just wasn’t well enough to come off it.

In the end a specialist surgeon travelled up from Leicester to perform the operation, which was very high risk.

“He only just survived it. Then he had to have all sorts of other treatment to help his airways develop.” said Mike.

“About three weeks ago we had to make the horrible decision to take him off the ECMO with no chance of him going back on it. He had a five to 10 per cent chance of making it through the night. We said our goodbyes, but 24 hours later he had come through it. He really surprised everyone.”

Olly remains on a regular ventilator and it will be months before he can breathe for himself. Mike said it remains touch and go, with good days and bad days.

Mike said they have had huge support from family, friends, the hospitals and the charity CDH UK, which has given them emotional support.

This week, to mark CDH Awareness Day, Mike and Sophie are urging people to support its online petition calling on the Government to invest in more research.

Mike’s work colleagues as well as friends at Aspatria Rugby Club are already planning fund-raising events.

First published at 08:59, Saturday, 30 June 2012
Published by http://www.newsandstar.co.uk