WHEN expectant parents Clare Miller and Damien Curtis went for a routine 20-week scan, the first glimpse of their future son did not prove to be the usual moment of joy and reassurance.

Instead the young couple, from Park in Swindon, started expecting the worst when they were told a second scan would be needed, by experts at Bristol Children’s Hospital in Bristol. And they had to wait a whole weekend before finding out what the problem was.

“It was the worst weekend,” Damien said. “The first scan was Friday and we went to St Michael’s on Monday.

“They took us out of the scanning room and sat us down with the cardiologist and told us our baby had hypoplastic left heart syndrome.”

The couple were given information literature which seemed to confirm their worst fears.

“The leaflets told us that a child with that condition would not live past the age of 12,” Damien said. “It puts doubts into your head and makes you questions everything.”

The couple faced the unimaginable prospect of having to decide whether to terminate the pregnancy, or to face up to their baby having a major operation within days of birth, surgery which would be palliative rather than curative, followed by a lifetime of medication. They researched the condition on the Internet, then Damien decided he wanted to talk with the experts at the hospital again to get more information and understanding about the prospects for his son.

“They told me the information in the leaflets was out of date, and his chances were better than we had originally thought,” Damien said. “We read other people’s stories, people of all ages, and we knew he had to give him a chance.”

Clare, who grew up in Luton, already had a daughter Faye, who is now nine. Clare and Damien, from Swindon, have been together for three years.

When a baby has Hypoplastic Left Heart Syndrome, the left side of the heart (the part that pumps oxygenated blood to the rest of the body) does not develop properly, though the degree of underdevelopment differs from child to child.

It happens in up to four out of every 10,000 live births and makes up about eight per cent of all cases of congenital heart disease. It is one of the top three heart abnormalities to cause problems in a new born baby.

Despite the prognosis. Clare’s pregnancy continued smoothly.

The birth was induced at Bristol Children’s Hospital in Bristol on August 12 last year, and after eight hours’ labour, baby Phoenix was born, weighing in at a healthy seven pounds and eleven ounces.

He was taken straight to the neonatal intensive care unit and treated with the drug Prostin to help him through his first days, until at just four days old he had open heart surgery – the first of the four operations he has had in his short life.

“After the first surgery he had a heart attack, and went on life support for several days, then he had a stroke from the life support,” Damien said.

The couple were afraid they would lose their new son, but plucky Phoenix pulled through. Damien and Clare finally took their baby home for five weeks but had to return to Bristol in November when a scan picked up a narrowing of his aorta.

Phoenix returned to the operating theatre in December for two cardiac catheter procedures to widen the artery, then his second scheduled open-heart surgery, followed by an emergency third open-heart surgery to widen an artery that lead to his lungs, in March.

“He was in hospital from November to April – for six months,” Clare said. “We stayed at Ronald McDonald House, and Faye even started going to school in Bristol. Damien couldn’t work – it was a difficult time.”

“When he came out of surgery, he took a turn for the worse, when the oxygen level in his blood went down,” Damien said. “The doctor took us into a room and said we needed to call our family, so they could say goodbye. It was all like a very long, bad dream.

“The grandparents came, but everyday Phoenix just kept going, and getting better and better. He does everything in his own time.”

At eleven months, baby Phoenix is a smiley, lively baby but he requires round the clock care and attention – even more than the usual onerous demands of looking after a baby. He has medication 13 times a day and needs oxygen overnight.

Now his parents get welcome support from nurses at Jessie May, which recently opened a new base in Newbridge Square, Swindon.

The charity provides free specialist care to children with life-limiting conditions, and support to their families. Phoenix’s family is one of 35 families they are helping in Swindon.

“The hospital staff at Bristol referred us to Jessie May,” Clare said. “The nurse came to our home here in Swindon to meet Phoenix and for us to meet them.”

Since this introduction, Jessie May nurse Annette Asprey has visited twice a month, to take care of Phoenix and give Clare some much-needed respite.

“It gives you time to go out,” Clare said. “Though one time I spent the three hours cleaning the house!

“The nurse took Phoenix out for a walk, or if I go out they stay here with him. One time I got my nails done, or I go into town and go shopping. My mum was here last week, and I spent some time with her while there were here.

“Phoenix absolutely loves it when they come. He recognises her with the biggest smile ever.”

She said he had another small surgery coming up soon.

“It’s a life-long condition. Babies with this condition are all very different, but Phoenix also has some problems with his lungs, which makes things a little harder. The surgeries are palliative. His condition can’t be fixed but they can help.

“And he’s such a happy little soul.”

Clare said sister Faye had taken the challenges in her stride and loved taking care of her little brother.

Damien is planning to take part in the Land’s End to Bristol Cycling Challenge in September to raise money for Wallace and Gromit’s Grand Appeal, raising money for the Bristol Children’s Hospital in recognition of all that was done for Phoenix. It is a 240-mile ride over four days and the couple have raised more than half of their target £2000 in sponsorship already.

Jessie May was set up by the parents of Jessica May Purrington, a little girl who died at home aged four months, surrounded by her family and her nurses. Jessie May has a team of dedicated nurses who provide care to children and families during a child’s life and even after their death. Nurses provide vital respite care and emotional support as well as family events that help create treasured memories. To support Clare and Damien’s fund-raising effort, visit justgiving.com/fundraising/ajourneyforphoenix. For more information on Jessie May visit jessiemay.org.uk.