TINY Taletha Bell has hung on to her short life with sheer tenacity.
But despite being born with a critical heart condition and undergoing major surgery in her first months of her life, the 20-month old is thriving.
Her mum Amanda Bell and aunt Angela Ives of Darfield, say they will be eternally grateful to Leeds General Infirmary surgeons who kept Taletha alive.
And as this is Child Awareness Week, and Ward 10 (heart unit) at the Leeds hospital is currently under threat of closure, they want to highlight just how important the unit is to them, and rally support for keeping it intact for the future.
Taletha, a much wanted third child, had a difficult birth in May 2009, and after just two weeks back at home was quickly diagnosed at Barnsley District General Hospital with heart problems.
Her complete AVSD (atrioventricular septal defect) was diagnosed at Leeds, at which point, said Amanda, then 35, “my world fell apart”.
She was told her baby would die without major surgery - and soon.
Supported throughout by Angela, Amanda waited as Taletha underwent a nine-hour operation, followed by 48 critical hours in intensive care at Leeds.
Her chest was left open due to her much enlarged heart, then after a week her body was closed up, and she came off her ventilator for the first time.
However, an arterial line had allowed a blood infection and a pacemaker was placed in the baby’s tiny body.
“I cried all the time, couldn’t eat, sleep or function”, said Amanda.
But Taletha battled and pulled through, and after only a few weeks was allowed back to Barnsley, then finally home, while still subject to constant hospital checks and very watchful care from her family.
Later, it was back to Leeds for a permanent pacemaker to be fitted.
“We live one day at a time with my little warrior princess”, said Amanda. “She may need more surgery in the future but I have complete trust in the team at Leeds”.
Taletha will need her pacemaker changing within three to five years, and may require a further operation on her ‘leaky’ heart valve.
“If the Leeds ward closes, sick children my have to travel to London or Newcastle for surgery and we feel that could put their lives at greater risk, said Amanda.
“We want people to be aware that we could lose this first class facility for Yorkshire”.
Doting aunt Angela, 33, said that watching Taletha’s battle and Angela’s anguish had been “heartbreaking”.
She said: “I had to be strong for my sis. My niece now is so lovely. She still has medical challenges and I’m so proud of her. I love her to bits.
“I want to thank all the team at Leeds General Infirmary because without all their hard work she wouldn’t be here today”.
Leeds General Infirmary’s heart surgery centre is one of 11 that are subject to a national review by the Department of Health.
A set of options regarding the centre is expected to be announced this month. A spokesman for the Leeds Hospital said: “We are very anxious to hear the options that will be put forward, as is everyone else involved in the review. It is a case of waiting”.
At Leeds currently, three surgeons do in the region of 300 operations each year.
A petition has been set up by parents from LGI at www.thepetitionsite.com and there is also a Facebook group that has been set up to protest against the threat to the Leeds unit.
Both Amanda and Angela have signed the petition and urge anyone with concerns similar to their own to do the same.