Reconnecting with Kiiara

Sassy Kiiara soars defiantly above the CHAOS

“What’s on Kiiara’s wish list for 2024?” asks Sasha Louw, reflecting on the next stage of her daughter’s short but eventful journey. “To speak, to go to school and to live without her tracheostomy tube.”

That’s an inspiring wish list for a youngster who was once given a 5% chance of surviving before she was brought into the world by a pioneering delivery procedure just under six years ago. Kiiara’s journey began when Sasha underwent a routine scan five months into her pregnancy which revealed that her unborn daughter was suffering from congenital high airway obstruction syndrome – or CHAOS. “Basically, my baby couldn’t breathe in the womb,” explains Sasha. “I was breathing for her.”

At 38 weeks, a 25-strong team of medical professionals from the Red Cross War Memorial Children’s Hospital and Groote Schuur performed a world-first variation on the standard Caesarean procedure. This involved partially extracting Kiiara from her mother’s womb while keeping her umbilical cord attached to the oxygen-providing placenta as they performed a tracheotomy. Surgeons only cut Kiiara’s umbilical cord once they had opened up a breathing airway for her by inserting a tracheostomy tube below her windpipe.

Kiiara’s high-risk delivery was just the start of her roller-coaster journey. After two weeks in hospital, she went home for the first time. But almost immediately, she began to suffer near-fatal heart complications that stopped her from breathing three times, sending her frantic parents rushing her back to hospital. After six months as a cardiac patient, she underwent surgery to seal the hole in her heart. In March 2023, after five years of intensive care and attention, she underwent her third major operation, when surgeons reconstructed her vocal cords, opened up her airways and inserted a stent.

Given her traumatic medical history, it’s hardly surprising that Kiiara has not yet learnt to talk. But that hasn’t dampened her irrepressible spirit. “She’s always been sassy,” says Sasha. “She may not have the gift of speech yet, but she’s made up for it by teaching herself to sign then letting us know exactly what she wants and how she feels.”

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