A dad has shared his daughter’s incredible journey as the “miracle baby”, born with half a heart, who was not expected to survive birth and is now looking forward to her third birthday.
Tinsley-Rose Sisson’s serious health condition was detected at the 20-week ultrasound, revealing she had a rare disease causing the left side of her heart to be significantly smaller than typical.
Tinsley-Rose’s parents Kenny Sisson and Jamie Pearce, both 30, from Northallerton, North Yorkshire, who have since separated, chose to proceed with the pregnancy despite being warned of potential complications, cherishing the hope for even “just one day” with their daughter. Born in January 2022 after a two-day labour at Leeds General Infirmary, it was also found that Tinsley-Rose had Turner syndrome—a genetic disorder affecting only females that can cause growth and developmental issues.
Despite multiple challenges, including keyhole surgery at just 18 months old, Tinsley-Rose is described as “bubbly” and “cheeky”, and she enjoys keeping up with her elder brother Kenley, age 11. The family is now facing the prospect of open-heart surgery to extend Tinsley-Rose’s life, which may necessitate installing a robotic valve on her heart—a procedure that could take place in Germany and cost around 12,000 euros (£9,900), an expense Kenny says they are prepared to meet if necessary.
“We’ve always called her a little miracle, she was a miracle baby as soon as she was born,” Kenny shared with 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.”
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Tinsley-Rose was born with hypoplastic left heart syndrome (HLHS), a rare type of congenital heart disease where the left side of the heart doesn’t develop properly and is too small, halving the organ’s overall size, the NHS explains.
This condition means the heart can’t pump blood around the body effectively, limiting children in their physical activities. Although surgeries can improve life quality, they cannot fix the defect, and the lifespan of those affected remains uncertain, with the oldest survivors currently in their late 20s, according to the BHF.
The condition was first spotted during Jamie’s 20-week ultrasound scan. Kenny and Jamie, who have since parted ways, faced the devastating decision about whether to continue the pregnancy given the potentially brief life expectancy of their child.
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“The odds were very against us from the start,” Kenny recalled. “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, a little fighter born on January 31, 2022, at Leeds General Infirmary, endured a two-day labour before arriving via C-section. “We didn’t know how bad it was until she was born,” her father Kenny revealed.
The newborn spent the first two to three weeks of her life on ventilation to aid her breathing. It was then that doctors discovered Tinsley-Rose had Turner syndrome, a genetic disorder exclusive to females that affects around 1 in every 2,000 baby girls, as per NHS data.
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This condition means a girl has only one normal X sex chromosome instead of two, leading to shorter stature and underdeveloped ovaries. “It was horrible, things kept getting added on as to what was wrong with her,” Kenny expressed, detailing the constant hospital visits for new scans and heart assessments.
“She didn’t have a clue what was happening.”
At 18 months, Tinsley-Rose underwent a coronary angioplasty through keyhole surgery to stretch open a narrowed or blocked artery. “She has an aortic valve which just isn’t opening up anymore,” said Kenny.
While the procedure extended her life, her activity is limited due to Hypoplastic Left Heart Syndrome (HLHS). Struggling to match her lively older brother Kenley’s pace, Turner syndrome also presents mobility challenges for her.
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“Her feet face inwards so walking-wise she’s not as good on her feet, running-wise she just falls on her bum,” he explained.
“We’re starting to notice more things of the Turner coming through now as she’s getting older.”
Despite the challenges she has faced in her early years, Tinsley-Rose is described as “bubbly”, “chatty” and “cheeky”. “She’s an absolute dream, she’s exactly what a three year old little girl should be like,” Kenny shared.
“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’s also making great strides developmentally, with Kenny noting that she is talking and beginning 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.”
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Tinsley-Rose may now require a significant open-heart surgery to extend 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 explained.
“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 added. “This is just going to prolong her life.”
If the surgery becomes an urgent necessity, Kenny mentioned the family is ready to spend 12,000 euros (£9,900) for the procedure to be done privately in Germany, although nothing is set in stone yet.
The family will learn more about the next steps after a series of medical tests on Tinsley-Rose later this month. Kenny said: “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,”.
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He is considering taking his daughter to Germany for the surgery if it’s needed urgently. He added: “If we’re told she needs open-heart surgery urgently, I’ll be looking for us to get it done in Germany.”
“It will cost us money but at the end of the day, it’s my daughter’s life.”
Despite the challenges, Kenny hopes his daughter can have a relatively normal childhood.
He said: “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,”. A friend of the family has set up a GoFundMe page to help raise money for the potential surgery.
So far it has raised just over £300. To donate, visit the GoFundMe page for Tinsley-Rose here: gofundme.com/f/tinsleyrose.