3-year-old, Kyleigh ‘Milana’ Kista, from Benoni South Africa was diagnosed with a Complex Congenital Heart Defect at birth, and needs urgent, life-saving treatment in the US within the next 3 months.
Kyleigh’s condition, known as Tetralogy of Fallot with Pulmonary Atresia, VSD & Mapca was first described by Cardio-Thoracic surgeons as a ‘monster in her chest.’
“Kyleigh does not have the valve that connects the heart to the lungs, the arteries that are meant to be attached to this value is free-floating and underdeveloped and not connected to her heart. She has a large hole in heart and survives on 2 collateral arteries of which one has already started to narrow severely. This all puts a lot of strain on her little body.“ says Serina Kista, Kyleigh’s mom.
In her short life, Kyleigh has endured 3 open-heart surgeries and countless non-invasive procedures that have done little to remedy her warrior heart.
A second chance for Kyleigh
In November 2021, the Kista family’s ‘world came crashing down’ when they were faced with limited options to save their daughter’s life in South Africa.
As a last resort, doctors suggested that the family wait until Kyleigh’s organs begin failing, at which point a heart & lung transplant would be considered.
As there are a limited number of donors available, and the fact that this procedure has never been performed on a paediatric patient before, the family feared the substantial risk their daughter would be subjected to.
“Kyleigh would need to be condemned to significant suffering and damage to her heart and lungs before being admitted into ICU in a critical condition to be placed on a donor list and fight for her life with no guarantee of finding a donor in time “, says Kyleigh’s mother Serina.
In absolute desperation to save Kyleigh’s life, the family investigated alternative treatments, finally reaching out to the Boston Children’s Hospital in the USA for a second opinion.
Answering their prayers, doctors revised Kyleigh’s case and restored all hope that their beautiful little girl could be saved and have a better quality of life.
“They proposed an innovative technique to repair her heart, which they currently perform with great success at the hospital. They will use Kyleigh current anatomy and reconstructing her blood vessels in order to flow effectively through her lungs while also incorporating her collateral arteries as part of this procedure.” says Serina.
Time is of the essence to save Kyleigh
Understanding the urgency of the procedure, the hospital kindly offered a reduced rate for the operation, which is still an astronomical amount for the family without power or influence.
To fund the operation in the USA, estimated at R5 000 000 ($295,761), the family has launched a crowdfunding campaign on BackaBuddy, to appeal to the public to support their final and only hope to save their little one.
“Boston Children’s Hospital has given us new hope and we are holding on to this option with all that is in us. Without it, our little girl will never get the chance to grow up and have a normal, happy, healthy life.” – says Serina.
An outpouring of compassion
With overwhelming support from over donors both locally and internationally, over R4.7 million ($312 590) was raised on BackaBuddy, which has since been paid over to the medical facility in Boston!
The family’s visas have been approved and Kyleigh’s life-saving open heart surgery is set to take place on 24 March 2022.
“We received overwhelming support from family, friends, colleagues and the community. Thank you for the heartfelt contributions, prayers and faith that Kyleigh will not only obtain the money for the procedure but will succeed through the procedure, bringing us to tears. We felt hopeless and alone but today we have so many people coming to Kyleigh’s rescue to help us give a future, an opportunity at life” says Kyleigh’s mother, Serina.
A mended heart
Kyleigh’s first operation, a cardiac cartherization, took place on 22 March 2022 at Boston Children’s Hospital.
During the 4 hour procedure, which ‘went even better than expected’ , Kyleigh’s arteries were ballooned and a stent was placed and dual supply was fixed.
With Kyleigh making a quick recovery, the final procedure to repair her heart and lung connection took place on 24 March 2022.
After 8 hours on the operating table, doctors declared the surgery a resounding success and Kyleigh was placed on a ventilator in ICU.
Fortunately, within less than 2 days of her surgery, Kyleigh was moved from the intensive care unit to the stepdown unit.
“Kyleigh’s recovery is astounding, it’s truly the grace of God!” – says Serina
‘We can breathe again’
Although Kyleigh’s surgery has been paid for, the fight is not yet over, Serina told IOL:
“Kyleigh will need medication after surgery. We are not sure what medication will be needed, they will advise us after the surgery is done. She will need annual check-ups and most likely a valve replacement when she is older.”
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