'Miracle' baby defies odds to reach third birthday

A "miracle baby" born with half a heart is preparing to celebrate her third birthday despite her parents being told she might not survive birth.

Medics spotted Tinsley-Rose's condition when her mother went in for her 20-week scan in 2021.

Her parents were given a choice on whether to continue with the pregnancy but opted to keep going, saying they would be happy with even "one day" with their daughter.

Now, three years later, her father, Kenny Sisson, from Northallerton, North Yorkshire, said: "We've always called her a little miracle, she was a miracle baby as soon as she was born."

He added: "We were told she may only live for three days and now she's nearly three.

"We wonder if there's anything that is going to stop her from carrying on – we just take every day as it comes.

Tinsley-Rose was born in January 2022 in Leeds with hypoplastic left heart syndrome, a rare type of congenital heart disease where the left side of the organ does not develop properly, according to the NHS.

The condition means the heart is unable to pump blood around the body effectively, causing children to be limited in their physical capabilities.

While surgery can allow for a better quality of life, it is not possible to correct the abnormality meaning it is uncertain how long children with the condition will live for, according to the British Heart Foundation.

Mr Sisson said: "The odds were very against us from the start.

"We were told it would be surprising if she even had a normal birth and came out alive.

"They told us exactly what was going on but we felt we'd be happy even if we got just one day with her."

It was only after her birth they discovered she had also been born with Turner syndrome, a female-only genetic disorder that affects about one in every 2,000 baby girls, according to the NHS.

A girl with Turner syndrome only has one normal X sex chromosome, rather than the usual two.

"It was horrible, things kept getting added on as to what was wrong with her," Mr Sisson said.

"Her early childhood has been constant hospital appointments, having new scans, heart scans.

"She didn't have a clue what was happening."

Despite the challenges in her early life, including undergoing keyhole surgery when she was just 18 months old, Tinsley-Rose is "bubbly" and "cheeky".

Mr Sisson said she does find it difficult to keep up with her energetic older brother, and Turner syndrome has caused her some mobility issues.

He said despite her health issues she is exactly what a little girl should be.

"We do let her get away with murder because we didn't expect her to be this age, so we take the good with the bad with her – we love the bad even more if anything."

He said the family face the possibility his daughter will need open-heart surgery, involving the fitting of a robotic valve to her heart, to prolong her life.

If needed urgently the operation could take place privately in Germany and the family would be prepared to pay the £9,900 fee.

"She's going to have more heart scans towards the end of January, they're basically going to do a full MOT on her and then we'll know a hell of a lot more about what we're going to do," he said.

"It will cost us money but at the end of the day, it's my daughter's life."

He said the family would do anything to try and prolong her life and hopes that Tinsley-Rose will be able to have a normal childhood.

"We want her to be able to start nursery, we want her to be able to live a normal childhood – maybe with a few difficulties along the way but it's something that we're ready for," he said.

Listen to highlights from North Yorkshire on BBC Sounds, catch up with the latest episode of Look North or tell us a story you think we should be covering here.