NEWLYWEDS Chris and Amie Jones found out they were expecting the same day they lost her brother to a heart attack last year.

Little did they know, over the next few months they would come up against more heartache after finding out their unborn baby would face a battle of his own.

When the couple, who are also parents to Harry, 10 and Rosie, four, went for their 20 week scan they were told there was a problem with the baby’s heart. They were sent to Nevill Hall Hospital the same day for further tests and to Bristol Children’s Hospital the day after.

They underwent more tests and were then told the baby had a 70% chance of having Down’s syndrome. The baby was diagnosed with a Atrioventricular Septal Defect (AVSD) which means he has faulty heart valves that leak.

Throughout the pregnancy, Amie was monitored by the cardiology and pre-natal specialists at the University Hospital of Wales in Cardiff and was booked in for a c-section on February 20.

Amie went in to labour on February 13, a week before her planned c-section.

Little Griff was born on Valentine’s Day and was immediately taken into intensive care.

Amie said: "Griff’s sugar levels wouldn’t stabilise and so he was monitored closely. After a week they were happy with his progress and we were allowed home. He had regular checks and we were told that his weight had to reach 10kg before he could have the surgery he needed to repair his leaky valves."

Griff was monitored closely and over the summer, doctors noticed he had stopped growing. In October, he caught a cold, which meant a hospital stay.

"We took him to the doctors and his oxygen sats were low," said teaching assistant Amie: "He was transferred to Nevill Hall Hospital where he was diagnosed with a collapsed lung, septicaemia and pneumonia and was on constant oxygen. We were allowed home after six weeks and he seemed better."

Unfortunately on December 4, Griff caught another cold and was taken back in to Nevill Hall: "He just wasn’t recovering and this time he had two collapsed lungs and wasn’t getting any stronger. On December 20, we were rushed to Cardiff where Griff was diagnosed with Pulmonary Hypertension, a condition which raises the blood pressure in the blood vessels that supply the lungs.

"He was put on a high dose of oxygen and his heart was swollen which meant his lungs wouldn’t re-inflate. He then caught RSV, which is a really nasty virus and was then diagnosed with food aversion and was on continues food drips and oxygen. They refused to give him his operation until he had been clear of this for six weeks."

Chris, who is a community banker for Barclays, was staying at home with Harry and Rosie during the week while Amie was at the hospital but the couple swapped over on a Friday night until the Sunday.

Amie said: "Being in hospital for so long was a strain on us all. We spent Christmas Day in the hospital and we had a picnic on the floor where we opened presents. I spent new year’s eve in the hospital with Griff while Chris was at home.

"We plodded along through this as it was too dangerous for us to go home before he had the operation"

The next hurdle came when Griff was rushed to Bristol Children’s Hospital on February 9 this year.

"We were transferred to Bristol with a watch team in the ambulance," said Amie. "He had a temperature when we got there and they cancelled his operation the next day. We were told he was going into severe heart failure and desperately needed the surgery.

"Over the next few days they kept cancelling his operation which was so frustrating. I was getting so cross because it felt like nothing was being done and I had a complete meltdown. There was lots of going back and for before a decision was made. His first birthday was on February 14 and he finally had his surgery the next day.

"The odds were so low of him having the condition in the first place but we were also told he had a one in 20 chance of surviving the operation."

The couple faced an agonising eight hour wait while Griff was in surgery.

"The repair to the AVSD was more complicated than they thought but we were told it went well. We went to see him and he was still sedated and he was taken straight in to the high dependancy unit. The hospital staff were amazing, Griff’s surgeon was lovely, and Richard the anaesthetist put our minds at rest."

Griff’s fight wasn’t over yet as a few days later, the worried parents were told he had developed super ventricular tachycardia (SVT).

"They tried shocking his heart back to a normal rhythm but it didn’t work so he has been put on medication which means he isn’t allowed in direct sunlight and it can also damage his eyes which means three weekly check ups."

A week after his surgery Griff was well enough to come home and Amie and Chris were given stethoscope training so they can record his heart rate four to five times a day.

Amie said that balancing home life and being at the hospital was difficult: "It was really hard being away from Chris and the children for such a long time when we were in Cardiff and then when we both went to Bristol they struggled. We couldn’t have managed without our parents who helped with them both so much.

"When I was in Cardiff with Griff, weeks went by when I wasn’t able to see Rosie as she had a tummy bug and so couldn’t come to the hospital and I couldn’t come home to see her. It was really hard on us all."

What kept the family going was Griff’s personality: "Even when he was really poorly the stats and charts didn’t match his personality. He was always smiling, even when he was hooked up to tubes and wires and it kept us all positive.

"What also helped was how lovely the nurses were. When we went to Bristol the Cardiff hospital staff kept ringing to check how he was. In Bristol they brought him Christmas and birthday presents and even gave us hats and crackers."

When Griff was in hospital in Bristol, the family were helped by a grant which helped with travel and food, and they stayed in a Ronald McDonald house. They also received a donation from the WAAT4 challenge committee.

Griff’s condition is for life and Amie said: "He will be able to go to school normally but will be slightly behind in his development because he is still so small. He won’t be able to play contact sports and will never have a normal life but should have a normal life span."

Both Chris and Amie wanted to thank so many people and said: "We cannot thank the nurses and doctors enough for what they have done so far. A special thanks to the staff of the Pelican Ward at the University Hospital of Wales in Cardiff and those on Ward 32 at the Children’s Hospital in Bristol. And also a massive thank you to both our parents and friends and families who we couldn’t have managed without over the last few months."

Amie has now signed up for two fundraising events to raise money for the Wallace and Gromit Grand Appeal, the Bristol Children Hospital’s charity.

Amie, who has never ran before, said she was in a "bad place" one day at the hospital when she spontaneously signed up to do the 10K run as well as a skydive.

"I wasn’t having a good day and there was a man from the Wallace and Gromit Grand Appeal in the hospital. He convinced me I should sign up and so I put my name down for a 10k which I will do in Bristol on May 15 and then a sky dive, which will be in Swindon on June 4. A group of people take part in this every year to raise money to give back to the hospital."

Unfortunately, at a check up last week, Amie and Chris were told that the valve repair hadn’t worked: "Griff’s medication was upped and as the repair didn’t work he will need replacement surgery sooner that we first thought. It is just a waiting game now to see how far Griff can go by himself but he keeps us positive with his beaming smile."

To donate to Amie’s Just Giving page visit www.justgiving.com/Amie-Jones1402?utm_id=55