Baby with less than 5% chance of survival has life-saving surgery after parents find pioneering procedure online
Couple told unborn baby had 50 per cent survival chance but this was then revised to five per cent
Parents' online research uncovered a
risky treatment performed in the womb that involved inserting a balloon
into their son's trachea Operation had 33 per cent risk of miscarriage

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UPDATED:

07:54 GMT, 8 August 2012

A baby given less than five per cent chance of surviving birth is now fighting fit, after his parents found out about a life-saving procedure on the internet.

Doctors warned Lucy Hay, 37, and her partner Stuart, 41, to expect the worst in April 2011 when they discovered their unborn baby was suffering from a rare respiratory condition.

Thomas Hay was diagnosed with Congenital Diaphragmatic Hernia (CDH) – a hole in the diaphragm which allows organs elsewhere in the body to move into the chest cavity which prevents the lungs from forming correctly.

Thomas Hay

Lucy Hay with Thomas

Fighting fit: Thomas, 11 months (left) is now home with his parents. He needed to spend months in hospital before he could breathe independently

In desperation the parents scoured the internet for new treatments and discovered a pioneering procedure that could give Thomas a chance. The operation, which is carried out in the womb, is called Fetoscopic Tracheal Occlusion
(FETO) and is performed by just one surgeon in Britain – Professor Kypros Nicolaides.

FETO involves inserting a tiny balloon into the baby's trachea using keyhole surgery. Once inflated fluid builds up in the baby’s lungs forcing them to grow.

The Hays went back to their consultant who said the risks were high but she referred them to King’s College Hospital in London to find out more.

Professor Nicolaides met the Hays in May 2011 and agreed to carry out the operation which is done in only the most severe cases of CDH and in itself carries huge risks.

Thanks to the balloon Thomas’ lungs increased in size dramatically. He was born at 37 weeks in August and eventually, after months spent in hospital, he was able to breathe completely independently.

Now Thomas has amazed doctors by making a full recovery.

Thomas was diagnosed with a hole in the diaphragm when he was still in the womb. It causes organs elsewhere in the body to crush the lungs

Thomas was diagnosed with a hole in the diaphragm when he was still in the womb. It causes organs elsewhere in the body to crush the lungs

Hospital visit: Lucy and Stuart with their son Ben, 8, Milly, 5, visiting Thomas

Hospital visit: Lucy and Stuart with their son Ben, 8, Milly, 5, visiting Thomas

Lucy said: 'We had a routine 20-week scan in April 2011, the sonographer was so quiet and really concentrating on the baby’s chest area.

'My worst fears were confirmed when she said “What I am seeing is not quite what I should be seeing.” She told us that Thomas’ stomach and liver were up is his chest cavity and that our baby had a hole in his diaphragm.'

The couple, from Llandudno, Conwy, were first told Thomas had a 50 per cent chance of survival and initially believed they had two choices – terminate the pregnancy or continue to full-term and wait and see.

Lucy, a mother-of-three said: 'We never considered terminating the pregnancy, however small Thomas’ chances of survival there was no way I could take that from him.

'We spent hours researching online and came across in-utero surgery which is a medical trial in its infancy. We didn’t know much about it but we knew it was something we had to look in to and couldn’t stand the regret of not trying.

'Our consultant had never mentioned the surgery. So when we found out about it, we organised a meeting with her to discuss it.

'She completely respected and appreciated that it was something we felt we had to explore, but would not recommend it to us as there were so many risks involved.

'We pursued it and she was more than happy to refer us and get us an appointment with one person in the UK who performs the complicated surgery, world-renowned Professor Kypros Nicolaides, at Kings College Hospital, London.

'We went to the appointment thinking Thomas had a 50 per cent chance of survival, but within an hour of getting there were given the devastating news that his relative lung size had decreased so much that his chance of survival was significantly below five per cent.

'The team at Kings College Hospital had never known a baby live with the same level of problems without the FETO procedure.'

Relief: Thomas was initially given a 50 per cent chance of survival, but this was downgraded to just five per cent

Relief: Thomas, pictured with his parents, was initially given a 50 per cent chance of survival, but this was downgraded to just five per cent

Thomas had a balloon inserted in his windpipe to force his lungs to grow while he was in the womb

Thomas had a balloon inserted in his windpipe to force his lungs to grow while he was in the womb

Professor Nicolaides gave the family three options – terminate the pregnancy, continue full-term then plan a funeral or undergo pioneering surgery and attempt to boost their baby's chances of survival – if he survived the operation.

Lucy said: 'We decided to go ahead with the procedure. There was no chance that Thomas would survive without the operation and a small chance that he would survive with it.'

The couple knew there was a 33 percent chance of instant miscarriage and the possibility of waters breaking prematurely for up to a fortnight after surgery.

At 24 weeks pregnant, Lucy underwent the 20-minute procedure. An incision was made in her stomach, through the womb and into the amniotic sack. A camera was guided through the baby’s mouth, down his throat and into his trachea where a tiny balloon was inserted to completely block his windpipe and force his lungs to grow.

Despite Lucy’s waters breaking a fortnight after the procedure, the pregnancy continued and at 37 weeks Lucy was finally induced, after 11 weeks in hospital.

She said: 'I was so scared – scared that I was about to give birth and scared that I was about to lose my baby that we had fought so hard for.'

After 18 hours in labour, baby Thomas was born on August 12 at 6.50am, weighing a healthy 6lb 6oz.
Immediately doctors inserted a tube through Thomas’ mouth and down his windpipe to provide him with oxygen and assist his breathing.

At just 10-hours-old he was transferred to Alder Hay Children’s Hospital where a surgeon opened Thomas’ torso and removed his stomach, liver and intestine from his tiny body whilst they fixed his hernia.

Thomas recovered well from the operation and doctors decided to remove his breathing tube after a week but he began to struggle and it had to be reinserted. Thomas spent months in intensive care and had more treatment at Great Ormond Street Hospital but eventually in October 2011 came home for the very first time.

Breathing difficulties and chest infections meant the brave boy had to face months of more treatment before his parents could have him home for good.

Professor Kypros Nicolaides, at King’s College Hospital’s Harris Birthright Unit, said: 'It is extremely pleasing when we have a situation where we expect a baby not to survive and then at the end there is a beautiful baby that is born and has made it.

'It is fantastic for Thomas’ parents Lucy and Stuart but also rewarding for those who have helped to make this possible.'

Mr Hay said: 'We will be eternally grateful to all of the doctors and nurses who have looked after Thomas over the past year and we can not thank them enough.'

CDH occurs in one in 3,500 births and Lucy is keen to raise awareness of the condition. For more information visit http://www.cdhuk.co.uk/

An e-petition requesting the Government to give more funding to CDH research can be viewed here: http://epetitions.direct.gov.uk/petitions/33898