Communicating from the heart

Zahra Lesar is delighted about her new communicative device. With her is Edit Microsystems' Tessa Venter.

A Kewtown girl who suffers from a heart condition and was once even brought back from the dead by doctors can finally communicate with her family, thanks to technology.

Eleven-year-old Zahra Lesar, from Kewtown, suffers from multifocal atrial tachycardia where her heart can beat up to 300 beats a minute, three times faster than the average 100 beats a minute.

She had been unable to communicate with her family since May last year when she went into cardiac arrest but after receiving the Tobii Dynavox eye gaze device on Thursday, June 2, she can now tell her family how she is feeling.

Zahra suffered a seizure when she was just three years old (“Kewtown family raises funds for Zahra”, Athlone News, April 27). More seizures followed over the next three months and her heart rate clocked in at 300 beats a minute. In 2009, doctors at Groote Schuur Hospital operated and inserted electrodes in her heart to measure its electrical activity in order to find heart tissue causing the problem and remove it. But the operation was unsuccessful, and Zahra went on to be diagnosed with supraventricular tachycardia.

In 2010, she was diagnosed with multifocal atrial tachycardia with a seizure disorder and a second operation that followed this diagnosis was also unsuccessful. Doctors then did another ablation where they tried to freeze the spots on her heart, which was also unsuccessful. They tried four more ablations and the last one was done at Red Cross War Memorial Children’s Hospital where doctors inserted a loop recorder which recorded the activity in her heart.

Then in May last year, tragedy stuck when Zahra went into cardiac arrest while playing with her siblings. After numerous efforts to save her at Red Cross hospital, doctors declared her dead after six minutes.

After 15 minutes, however, doctors managed to revive her and she was put on a 72-hour life support machine. Minutes before it was scheduled to be switched off, Zahra moved her arm. But due to her having suffered brain damage from being starved of oxygen, she was left blind for four months. She regained her sight but could no longer communicate. She had to move her head or her eyes to show what she wanted and kicked one leg to indicate that she was in pain.

Fortunately, her family was able to raise R60 000 to buy the Tobii Dynavox eye gaze device, which comes all the way from Sweden.

The device involves Zahra’s eyes being used similar to the mouse of a computer. Software. called Clicker 7 and Communicator 5, was installed on the device which allows her to select different options on the screen. She is able to tell her family how she is feeling, what she wants to eat, wear, and whether she is in pain or not, by selecting different options via the app on her computer.

She can also play games on the app, which has an educational programme, and even take part in social media.

Zahra hasn’t suffered from any seizures for the past year and was only admitted to Red Cross hospital on the night of the fundraiser, May 1, for pneumonia, which according to her mother, Sakinah Lesar, is common among patients with her condition.

In April this year she reunited with her family after being discharged from St Josephs Home for Chronically Ill Children after a few months of rehabilitation.

“We couldn’t be more overjoyed having her at home. We were preparing for the worst after she came home from St Josephs, meaning sleepless nights and not having her pain under control, but it turned out we were wrong because as long as her feeds and meds are given on time, oh and nappy changing then she is as alert and calm like a baby. As long as there is someone around her making her laugh with silly jokes, she couldn’t be more happier,” said Ms Lesar, who said Zahra was even able to tell her that she loves her by using the new communicative device.

“Eighty percent of the time she is very happy while the 20 percent is sometimes when she has mixed emotions such as when remembering how she once ran up and down in the house and how she could also walk and talk before the incident. I think that she doesn’t want to accept that she is confined to a chair and that she lost her ability to speak. Sometimes I think it’s good and not so good, good because it makes her physically and mentally stronger it makes her reach beyond her actual limitations, not so good because she often becomes depressed and just shuts the world out and goes into a trance of her own,” she said.

“We would just like to extend our utmost thanks and appreciation to the community and family that came out that night to support our little Angel Zahra. We are overwhelmed with gratitude and joy and we couldn’t have done it without the support of friends and family. We say thank you and shukran to all and that the Almighty should continue to bless you all abundantly. Then a special thanks goes to ward councillor Suzette Little and Rashid Adams for extending their help by allowing us to make use of the Athlone civic centre.”