SHE was a six-month old baby with doting parents, had a fondness for chocolate digestives and was always smiling. But from birth little Hope Winter had a major problem with her heart, spent much of her time in hospital and lost her fight for life just four weeks ago.

Her grieving parents, Michael and Lisa Winter, of Distington, have no regrets about giving Hope her chance of life. The fairly rare condition she suffered from affects one in 5,000 babies and doctors gave her a one in eight chance of survival.

"If it had been only a one per cent chance of survival, we both agreed she was entitled to it," said Hope's dad Michael, 27. "People can live up to age 30 with this condition and with heart transplants longer."

Lisa's 20-week scan in pregnancy first revealed that something was amiss.

"They said it was a possible hole in the heart and it could be fixed," said Lisa, "But just four days later I was asked to go over to the RVI for another scan.

"Then we were told the diagnosis - hypoplastic left heart syndrome, in which the left side of the baby's heart had not developed." It meant the left ventricle was not formed properly and the heart would be unable to pump blood around the body effectively. 

There were three options outlined for the Winters. One was 'supported comfort care' ie for them to take the baby home right after birth, no drugs would be administered and she would die within a few days; the second was for a course of surgery after her birth, but there were risks with that and thirdly, Lisa could opt for a termination.

"I was offered a termination right up until 38 weeks but we both felt we had to give our baby a chance," said Lisa, "Abortion was not an option for us. We had seen her on the scans and I could feel her moving. We wanted her."

The Winters were told that their baby, who was born on January 20 at RVI, Newcastle, would need three major operations to overcome her situation. The first a few days after birth, a second at six months old and a third when she was aged three. All would be high risk open-heart surgery and the first, lasting 10 hours, took place when Hope was just four days old. 

Hope first came home to Main Street, Distington with her parents in March when she was nine weeks old but was back in hospital at the end of June.

It was after the second procedure, when she was 13 hours in the operating theatre, that Hope's condition deteriorated, even though surgeons had said there was a good chance of success. The Winters were expecting to be able to take her home two weeks after the operation but Hope's oxygen levels dropped and doctors were unable to take her off the life support equipment. Sadly, while still in hospital, two week's later, she died.

"The doctors thought she had had a mini-heart attack but there was a post-mortem where the findings were 'unascertained death'. In other words they don't know why she died," said Michael, a wagon driver at J T Atkinson builders merchants, Cockermouth. 

Arrangements made for Hope's intended christening on August 2 at the Church of the Holy Spirit in Distington had to be cancelled and a funeral organised instead. Hope was baptised by the hospital chaplain at Freeman and given the second name of Victoria, after a sister of Michael's who had died in 1985 at just four days old. Victoria had the same condition but it was undiagnosed prior to her birth.

Both Michael and Lisa, a teaching assistant at Dean School, are full of praise for the nursing staff at Freeman and grateful for all their help and support and have raised money in Hope's memory for the Children's Heart Unit Fund there and in the future want to hold events to raise more funds to support the work of the children's intensive care unit and the Sick Children's Trust. The Winters have already purchased fold-up beds for the Trust's Scott House to allow parents to be close to their children.

Said Lisa: "It's been shattering to lose Hope, she was such a lovely baby to have been through so much, always smiling and she brought a lot of joy. We would rather have had her and lost her than never to have ever known her."