She is such a happy, smiling baby, but 5-month-old Kay has never been to her family’s home in Eerste Rivier. A hospital ward is the only home she’s ever known. As a new-born baby, doctors discovered that Kay had trouble breathing and she was soon diagnosed with congenital central hypoventilation syndrome (CCHS), a rare respiratory syndrome that is also known as Ondine’s Curse. Ondine’s curse is a well-known myth that describes the tale of a mermaid called Ondine, who condemned her unfaithful husband by placing a curse on him that only allowed him to breathe while awake, thus giving him the choice between breathing (living) and sleeping (dying).
This rare, inherited condition is caused when the part of the brain that allows a person to keep breathing while asleep, is not functioning. Kay has had difficulty breathing since she took her first breath and as a result has spent every moment of her short life on a ventilator despite being completely healthy otherwise. At only two and a half months, tiny Kay underwent a tracheostomy procedure where a small tube was inserted through a surgical opening in her windpipe to help her breathe better. Although Kay can now breathe on her own when she’s awake, she is still an infant who falls in and out of sleep regularly. She therefore requires ventilation 24/7 to ensure that she does not stop breathing when suddenly falling asleep.
Her mom, Mycaila, has been by her first-born baby’s side in the Red Cross Children’s Hospital for over a month, as part of the Breatheasy Tracheostomy & Ventilation Homecare Programme pioneered by Sister Jane Booth. This programme is a comprehensive programme that has taught Mycaila all she needs to know about caring for Kay, such as how to use the special ventilation machinery and how to clean and change the breathing tube. “I struggled at the beginning. It was a lot to take in but now I feel that I know everything I need to.”
For Mycaila, the journey has been long and strenuous but she is looking forward to finally being able to take her baby home. The six-week Breatheasy Programme has boosted her confidence tremendously. “I am so excited to take her home. It has been a really long time in hospital but at least she is much better now.” Doctors are confident that once Kay is two-years-old she would be able to breathe unassisted during the day and have no doubt that she will have a long and happy life. Her mother echoes their sentiment and expresses her gratitude to the Red Cross Children’s Hospital for their excellent care of her little baby.