Eleven-year-old Zahra Lesar was declared dead on the operating table at Red Cross Children’s Hospital after going into cardiac arrest. But, miraculously, doctors brought the little Kewtown girl back, although she is now confined to a wheelchair, unable to speak, and can only use her right leg and left arm.
Her family are now trying to raise R60 000 to buy a device that will allow Zahra to communicate by using her eyes as a computer mouse to select items on a screen.
Zahra suffered a seizure at the age of three and was rushed to Red Cross Children’s Hospital. More seizures followed over the next three months and her heart rate clocked in at 300 beats a minute, three times faster than the average 100 beats a minute. In 2009, doctors operated and inserted electrodes in her heart to measure its electrical activity. They wanted to find the heart tissue causing the problem and ablate (remove) it. But the operation at Groote Schuur Hospital was unsuccessful, and Zahra went on to be diagnosed with supraventricular tachycardia, in which the heart can beat up to 300 beats a minute. In 2010, she was diagnosed with multifocal atrial tachycardia with a seizure disorder and a second operation that followed this diagnosis was also unsuccessful.
“They tried another ablation, where they tried to freeze the spots on her heart – that also didn’t work. They tried four more ablations and the last one was done at Red Cross where doctors inserted a loop recorder which recorded the activity in her heart. No one could tell us what was wrong,” said Zahra’s mother, Sakinah Davids.
She remembers how at Red Cross, as doctors searched for a diagnosis, Zahra had been known as the “cot jumper” and how she had always found her daughter eagerly waiting for her each time she visited her.
“She would jump out of her cot and run to the security to wait for me. They started diagnosing her with different things such as a spastic quadriplegia (cerebral palsy that affects both legs and arms then hemiplegia (paralysis of one side of the body.) We told them to give her time and she will become the Zahra we know.”
Then in May last year tragedy stuck when Zahra went into cardiac arrest while playing with her siblings in the lounge of her parents’ Kewtown home. After numerous efforts to save her at Red Cross, doctors declared her dead after six minutes.
“They put all of us out of the room, so I knew it was serious because I had never been put out of the room before,” said Ms Davids. “After six minutes, they said she didn’t make it, but after 15 minutes they said they managed to revive her after very hard work.”
Zahra was in a coma for more than a week. Doctors told the family to prepare for the possibility of Zahra being in a vegetative state when she woke up. Zahra was put on a 72-hour life support machine. Minutes before it was scheduled to be switched off, said Ms Davids, she moved her arm.
But she had suffered brain damage from being starved of oxygen and was blind for four months. She has since recovered her sight, but many challenges lie ahead for her, not least of which is finding a way for her to communicate. Zahra’s family do not have a medical aid fund, and on Sunday, they held a fundraiser at the Athlone civic centre to raise the money needed to buy the Tobii Dynavox eye tracking device, which they hope will help to close the gulf of silence between them and Zahra.
At the moment Zahra moves her head or her eyes to show what she wants. She kicks her one leg to indicate that she is in pain.
“She can high-five us now, which she could never do before. Doctors said she would never be able to do that,” said Ms Davids. “This device can help her with her school work. It will help her communicate with us, and teach her to become independent. She will be able to tell me how she’s feeling with the moods app on the device.”
Zahra is being fed via a peg feeder through her stomach and she has a pacemaker which kicks in if her heart stops. Doctors have told the family that Zahra is living a minute-to-minute life and is not expected to live until the age of 18.
Last Thursday, Zahra returned home after spending months at the St Joseph’s Home for Chronically Ill Children.
“I want to tell mothers to expect the unexpected. In a sick child, you can never expect what’s going to happen. The morning of the attack, she was running around fine, and then she had the episode. A week before that, she started talking to herself. She would say ‘God, forgive me for the medication.’ And we thought what is she saying? She would say, ‘I won’t go there anymore,’ and she packed her bags, and greeted everyone in the house, and she turned around at the gate and came back. We’re only realising now that she actually did leave us and she came back to us. That was a sign telling us that she’s gone, but she’s coming back.”
“We’ve accepted the way she is now. This is her resting period. Her heart was too overworked, this is her resting time. There was ten years of her life where she was very overactive, so whether it takes 10 years for her to rest I know she will be the same Zahra she was before this happened. A lot of people ask me why I don’t break down and cry, but I have faith. I know she will live. She’s not dead, she’s alive, you grieve for someone that’s dead,” said Ms Davids.
Analize Chambers, speech and language therapist at St Joseph’s, said the Tobii Dynavox Eye Gaze is the only hope for “the very lovable and friendly” little girl.
“Zahra had the opportunity to test this device and she was able to use it independently after five minutes of introduction. The eye gaze device and software package can change Zahra’s current situation in an instant. She will be able to engage in leisure activities such as reading, playing games, surfing the internet, as well as use it as a communication and learning tool. She will be able to have a conversation with friends and family and express her needs or feelings independently,” said Ms Chambers.
Anbody who wishes to help the family, contact Zahra’s aunt, Noorunisa Vollenhoven, at 084 308 9362.