‘Miracle baby’ born with half a heart defies odds to close in on third year after parents told she may not survive birth

A “miracle baby” born with half a heart whose parents were told she may not survive birth has defied all odds and is now preparing to celebrate her third birthday.

Kenny Sisson, who lives in Northallerton, North Yorkshire, said the health condition of his daughter, Tinsley-Rose Sisson, was first detected in her 20-week ultrasound where it was found she has a rare disease that means the left side of her heart is much smaller than usual.

Kenny and the baby’s mother Jamie Pearce, both 30, were given the choice on whether they wanted to continue with the pregnancy due to the complications their baby could face, but the now-separated parents decided to carry on as they would be happy with “just one day” with their daughter.

Following a two-day labour at Leeds General Infirmary, Tinsley-Rose was born in January 2022 – where it was also discovered she has Turner syndrome, a female-only genetic disorder that stunts development and growth.

Despite the challenges in her early life, including undergoing keyhole surgery when she was just 18 months old, Tinsley-Rose is “bubbly” and “cheeky”, and loves trying to keep up with her older brother, 11-year-old Kenley.

Tinsley-Rose’s family now face the possibility of open-heart surgery to prolong her life, which involves fitting a robotic valve on her heart and could take place privately in Germany if needed urgently – and Kenny said the family are prepared to pay a proposed fee of 12,000 euros (£9,900) if this is the case.

“We’ve always called her a little miracle, she was a miracle baby as soon as she was born,” Kenny told PA Real Life.

“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 with hypoplastic left heart syndrome (HLHS), a rare type of congenital heart disease where the left side of the organ does not develop properly and is too small, according to the NHS – halving the organ’s overall size.

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 (BHF) – and the oldest survivors at present are in their late 20s.

Kenny said the condition was first detected during Jamie’s 20-week ultrasound scan.

The pair, who are now separated, were posed the heartbreaking question of whether they wanted to continue with the pregnancy due to the short life their baby may have.

“The odds were very against us from the start,” Kenny said.

“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.”

Tinsley-Rose was born on January 31 2022 at Leeds General Infirmary via C-section in a labour that lasted two days.

“We didn’t know how bad it was until she was born,” Kenny said.

“She was on ventilation to help her breathe for two to three weeks.”

It was also discovered Tinsley-Rose had been born with Turner syndrome, a female-only genetic disorder that affects about 1 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.

Almost all girls with the condition are shorter than average and have underdeveloped ovaries.

“It was horrible, things kept getting added on as to what was wrong with her,” Kenny said.

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

“She didn’t have a clue what was happening.”

When Tinsley-Rose reached 18 months old, she underwent a keyhole operation called a coronary angioplasty, where a balloon is used to stretch open a narrowed or blocked artery.

“She has an aortic valve which just isn’t opening up anymore,” Kenny said.

While the operation helped to prolong Tinsley-Rose’s life, she cannot be very active with HLHS.

Kenny said she finds it difficult to keep up with her energetic older brother, Kenley, and Turner syndrome has caused her some mobility issues.

“Her feet face inwards so walking-wise she’s not as good on her feet, running-wise she just falls on her bum,” he said.

“We’re starting to notice more things of the Turner coming through now as she’s getting older.”

Despite the hurdles she has faced in early life, Tinsley-Rose is “bubbly”, “chatty” and “cheeky”.

“She’s an absolute dream, she’s exactly what a three-year-old little girl should be like,” Kenny said.

“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.”

She has also developed well, with Kenny saying she is talking and starting to learn how to use the potty.

“She’s doing everything that we didn’t expect her to do at this age at the minute,” he said.

“The only thing we’ve really noticed is her height and growth are quite stunted at the minute.”

Tinsley-Rose may now need a major open-heart operation to prolong her life.

“We’re now looking into the possibility of having a robotic valve to help her pump more oxygen round in her blood,” Kenny said.

“When she was born, we were told she would need the balloon operation at 18 months, open-heart surgery at three years and possibly again at five depending on how it all goes,” he said.

“This is just going to prolong her life.”

Should she need the surgery as a matter of urgency, Kenny said the family are prepared to fork out 12,000 euros (£9,900) for the operation to take place privately in Germany – although nothing is confirmed at this stage.

“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,” Kenny explained.

“If we’re told she needs open-heart surgery urgently, I’ll be looking for us to get it done in Germany.

“We’ve looked at the success rates and they’re really good over there, we’ve all had a good look into it.

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

“She’s nearly three and if we can prolong her life any further, then we will.”

Looking ahead to the future, Kenny hopes 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.

A friend of the family has set up a GoFundMe page to help support them, raising just over £300 so far.

To find out more, visit the GoFundMe page for Tinsley-Rose here: gofundme.com/f/tinsleyrose