Doctor was surprised to hear of Neyamiah’s death
Doctor says Neyamiah James was looking better the day before she died as a result of load-shedding.
The doctor of thee-year-old Neyamiah James said she was looking better the day before she died as a result of load-shedding.
Neyamiah died in her mother’s arms on the way to hospital after her oxygen machine ran out of much of its battery during load-shedding, so when City Power’s planned maintenance came four hours afterwards on May 25, the machine failed. The parents switched her to a backup nebuliser and cylinder, but these did not help enough.
Now Eskom and City Power are pointing fingers at each other. Though they have both given their condolences, neither is taking responsibility for any failings.
Sunera James is blaming Eskom for her daughter’s death.
“I tried to nebulise her with a backup battery-operated nebuliser, which I had just gotten the day before. It brought her some comfort and she was stable,” Sunera said of helping the girl breathe during load-shedding in the early hours of the morning.
“Lights were restored around 04:15, we put her back on the oxygen concentrator. She was fine, then boom, at 08:00 on the dot we go off for maintenance. She started struggling again and my husband and I rushed her to the hospital. She died on the way in my arms. The cylinder was running low, and the refill wouldn’t get here on time.”
Neyamiah suffered from a rare form of neurodevelopmental disorder called Woree Syndrome, which features drug-resistant epilepsy and global developmental delay. She did not always need a breathing machine, but for the last few months needed additional oxygen at night.
Her condition was made worse when she contracted pneumonia two weeks before her death. She was admitted to hospital for a few days, thereafter the doctors discharged her with antibiotics and told her parents to suction mucous from her lungs when needed and give her oxygen at home. Little Neyamiah had to be nebulised every three hours, though showed signs of improvement in the days leading to her death.
Sunera said that it was sad that in 2023 people have to live like this. “Nothing will bring my daughter back. The damage and PTSD and trauma Eskom and load-shedding have caused us will stay with us forever.”
Ward 101 councillor Ralf Bittkau also gave his sincerest condolences to the family. “Having lost a daughter myself recently, this hurts even more,” he said. “I will take this unbelievable failure by our government all the way to the top.”
Bittkau has been spreading this story with media outlets, posts on social media, and even met Build One South Africa leader, Mmusi Maimane, to see if he might include this incident in his litigation against Public Enterprises Minister Pravin Gordhan.
City Power spokesperson Isaac Mangena said the impact of load-shedding implemented by Eskom was hitting families hard and there was not much City Power could do about this. Furthermore, the planned maintenance from 08:00–16:00 on the day was necessary to service equipment and address recurring outages in the area.
“In the case of medical conditions, City Power cannot guarantee an uninterrupted power supply, therefore, [it] encourages residents with medical conditions to have a back-up system or plans to keep their devices on at all times,” Mangena said.
Eskom spokesperson Daphne Mokwena said while the utility determines which stage of load-shedding the nation is on, it is up to licensees like City Power to develop their own schedules for their areas of supply.
“They then respond by shedding as per their own schedule,” she said. “City Power has an agreement with Eskom to do switching in areas where they cannot. All that Eskom does, is to switch off and on as per City Power’s schedule, nothing more or less.”
She also pointed out that the area had been subjected to several power outages that were unrelated to load-shedding.
Sunera said the funeral on May 31 will be private.
Those who wish to donate money towards the family can contact Bittkau on 084 572 4002. Food and flowers can be dropped off at Olivedale SPAR but contact Riaan on 082 426 9306 before doing so.
What the doctor says
Paediatric palliative care doctor Mehnaaz Ally saw Neyamiah the day before the girl’s death “She had a rare genetic disorder as we know, that causes refractory seizures, severe cognitive impairment and global developmental delay,” Ally said.
“They have a very short life expectancy due to the nature of the disease, as well as complications that arise from the disease, such as pneumonia, scoliosis, poor feeding and aspiration.”
Neyamiah was diagnosed with RSV pneumonia, which required her to be on oxygen. “Most children that have developmental and cognitive disability, are prone to lung infections. This is because they don’t have the ability to cough and clear secretions.”
The doctor said the day before her death, Neyamiah looked well. “Her lungs were sounding better, she had fewer secretions and we managed to wean her oxygen levels a bit. She was on the oxygen concentrator unit at that time and we talked about using the backup cylinder, or the family getting an inverter in for the ongoing electricity crisis as they didn’t have one.”
Therefore Ally was surprised to hear of the girl’s death the next day. “They had used the cylinder in the past, so I can’t say for sure whether there was a problem with it or not. It might have contributed to her death, but I don’t think it was the sole cause of it.”
Palliative care is a discipline of medicine that focuses on patients and families, who have life-limiting and/or life-threatening illnesses. Ally said doctors like her help those with these conditions live as well as they can, by carefully managing pain and other symptoms in a bid to make their last stage of life as comfortable and as dignified as possible. This can include counselling and support.
ALSO READ:
