SHE’S not yet two months old, but already little Rui Caston has shown her brave, fighting spirit.
Just days after she was born her parents Tim and Amber’s lives were turned upside down.
A routine check with the midwife uncovered a heart murmur, and further tests revealed Rui was suffering a major heart defect – complex congenital heart disease.
Doctors found two holes in her heart, and the two main arteries carrying blood to her heart were in the wrong position – a condition called transposition of the great arteries or TGA.
Medics told the couple their daughter needed an operation within the first month of her life, otherwise it might be too late.
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The couple, who were in Bali at the time with their two-year-old son Cassius, had to make the decision to immediately fly their newborn daughter to Singapore – one of the nearest places where surgery was possible after doctors ruled out flying back to the UK.
Tim, 39, told Sun Health: “We had to take immediate action to fly Rui out of Bali on an emergency passport while she was still fit enough to fly.
“We opted for Singapore due to the high quality of care they could provide.
“At the time returning to the UK for treatment on the NHS just wasn’t an option – the long flight was too risky.”
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Facing spiralling medical bills, the couple launched a Give Asia fundraising appeal and have so far raised a staggering £142,000 of their £300,000 target.
The outpouring of love and support has meant little Rui was able to undergo her first life-saving op on August 12.
At just 23 days old, surgeons at the Gleneagles Hospital in Singapore, performed open heart surgery to attach her aorta and pulmonary arteries in the right positions.
The little fighter recovered well but just days later Tim and Amber were rocked by more bad news.
Doctors discovered Rui was suffering from total heart block, a condition that causes the heart to beat more slowly or with an abnormal rhythm and would need a pacemaker.
What’s more, surgeons found the arteries they operated on initially had narrowed, restricting blood flow to the heart, and one of the arteries has a kink that needs to be straightened out. Medics told the couple further operations would be needed.
Doctors discussed whether or not Rui was stable enough to be flown back to the UK for further treatment, but a team at Great Ormond Street Hospital working with specialists at the KK Children’s Hospital in Singapore, where Rui is now being treated, decided it was best for her to remain in Singapore for her next surgery.
On August 28, Rui underwent a second major operation to fit a pacemaker – a device the size of an Apple watch that will help regulate her heart beat.
Tim, who grew up in Suffolk, said: “Rui had been doing really well in the run up to her second operation, she had a good couple of days.
“She was looking healthier and her chubby cheeks were back.
“Before her operation we were able to spend time with her and enjoyed some cuddles.
“We were expecting it to be a relatively non-invasive operation, but Rui’s surgeon Dr Loh ended up having to reopen her chest again.
“As a result, Dr Loh took the opportunity to remove some of the scarring around her aorta, a complication of the first op.
“We were anxious as the operation lasted longer than expected, this wasn’t planned but it was an added bonus – fixing two problems in one go.”
Rui is now back in the CICU – Children’s Intensive Care Unit – and is recovering well after her surgery but faces the prospect of more surgery.
Tim said doctors are hoping to remove the dressings on the wound on her chest as early as today, and said if everything is healing as planned they can plan for her discharge.
The couple will plan to stay in Singapore while they can organise a medical transfer to the UK but will have to wait until doctors deem her fit to fly.
"We're just keeping our fingers crossed that everything goes well over the next few days, and we can get closer to boarding a plane back to the UK," Tim said.
"We've received donations from over 2,000 people, which is just staggering – we never expected this level of support.
“It’s the incredible donations that have funded Rui's operations, so we are truly grateful to each and every person who has contributed to help us.
“We are, of course, using our own savings to pay for as much of Rui’s treatment as we can, however the medical bills are substantial and we simply can’t afford to pay for it all ourselves.
“The influx of donations has been truly heartwarming, and we have been blown away by the love, support and generosity from friends, family, friends of friends and many people we’ve never even met.
“We are keeping our hopes high and are so proud of Rui, she’s a strong, little fighter.
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"Our only wish is to see Rui lead a long and happy life with her big brother, Cassius.”
To donate and follow Rui’s journey, visit her Give Asia Fundraising Appeal here.
WHAT IS TRANSPOSITION OF THE GREAT ARTERIES?
ALSO known as TGA, transposition of the great arteries, is a condition where the two main blood vessels leaving the heart are in the wrong positions
The pulmonary artery, which takes blood to the lungs to pick up oxygen, and the aorta, which takes blood from the heart to the rest of the body, are swapped over.
It means that blood flows to the lungs to pick up oxygen but is then pumped straight back to the lungs, rather than travelling around the body.
And blood flowing around the body is unable to reach the lungs to pick up oxygen.
Due to the low level of oxygen in the blood, a child with TGA can appear blue, particularly their lips and tongue, inside the mouth and on the hands.
Some children will only appear blue when they cry, while others will appear blue all the time.
TGA often occurs with other types of congenital heart disease, as in Rui's case, including a hole in the heart.
In most cases surgery is required to switch the arteries back into the right positions.
For more information visit the British Heart Foundation.
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