SIENNA Singleton was just six weeks old when she was rushed to hospital after she stopped breathing and turned blue.
She underwent a nine-hour operation to save her life followed, when she was aged just two, by 16 hours of further surgery by specialists in Leeds, who say she is likely to need a third operation soon.
They discovered she had been born with heart valves the wrong way round, that one of her pumping chambers was missing, and a large hole in her heart.
Her family, who live near Doncaster and are about a 40-minute drive from Leeds Children's Hospital where she receives regular check-ups, are used to the staff at the hospital and trust the surgeons involved in her care.
She is among 300 children a year in the region who undergo surgery in Leeds for heart problems and all will be affected if services are axed under a national review of children's heart surgery.
A review team will announce on February 16 a final shortlist of options for the configuration of services around the country, but the early indications are that Leeds is only being considered on one of four options so far drawn up.
If services are lost, patients like Sienna will face trekking to Newcastle, Liverpool, Birmingham or Leicester for vital treatment. In some cases it would mean transporting critically-ill newborn babies along motorway networks, potentially separating them from their mothers.
But ending services in Leeds would also affect many more patients. Those with congenital heart problems often suffer from a range of other ailments and surgeons in Leeds would be unable to operate to repair them because they would not be able to deal with heart complications if they developed.
The loss of services would also be a major blow to the new children's hospital in Leeds following its opening only a year ago. The move makes the hospital only one of two in England to have a full range of services for children under one roof, but the end of heart surgery would mean that not all could be treated there in future.
Sienna's mother, Kerry, said she had taken her daughter to hospital in Goole and then to Scunthorpe for treatment when she first fell ill. Doctors transferred Sienna to Leeds at 4am but warned she might not survive the journey.
"They stabilised her as best they could. But if Leeds wasn't there and it was a case of going to Newcastle or London or wherever, how are they going to get there in time?" she said.
"Leeds covers such a large area as well – I can't understand why they would even question it. You worry about your children having heart surgery as it is, but if you're in a strange city the pressure would be twice as bad and you wouldn't have the same support from friends and family.
"I've got three other kids and if I'm hundreds of miles away I wouldn't be able to see them and there would also be the extra expense.
"I wouldn't have a clue who the people in the hospital would be. You put your child's life in their hands and you need to trust people. I've always said I wouldn't want anyone else operating on Sienna – they've saved her life twice."
The Children's Heart Surgery Fund in Leeds, which pays for equipment and research and supports families of heart patients, this week sent a briefing to MPs ahead of a reception in Westminster next month over the review.
It argues the unit covers more than five million people – one of the highest of all centres in England – but is well situated to expand with a population of 14m within two hours' travel time.
It also points to the benefits of centralising children's services on one site in the city in line with national guidelines and to excellent clinical outcomes for patients.
The briefing warns families would suffer further distress and cost if they were forced to travel further.
Review aims for fewer centres
THE review of children's heart services will lead to a reduction in centres from the existing 11 across England.
Each will be expected to carry out 400 operations a year and employ a minimum of four specialists to ensure round-the-clock cover.
Teams treating higher numbers of patients tend to have better results and see a wider range of patients, leading to fewer deaths and complications.
Leeds operates on about 300 patients a year and has three surgeons, although a fourth is being appointed.
Options for a final configuration of services will be announced shortly followed by a national consultation.
A final decision will be made by top NHS managers in July.