Durban - When a Verulam woman gave birth to her first child, a son, in March, all she wanted to do was hold him. But she could not because his skin blistered when she touched him, leaving raw patches on his tiny body.
So fragile was his skin that doctors were able to immediately diagnose him with epidermolysis bullosa, a rare skin disease affecting only 1 in 50 000 births.
“He has one layer of skin and any rubbing or pressure causes these blisters. When they burst they leave the skin exposed and sometimes it bleeds. I can’t even pick him up without a pillow,” said Nazmeera Akbar.
She and husband, Arshad, 28, have to wash and sanitise their hands before handling 5-month-old Abubakr.
The couple were newly married when they moved to Rustenburg to start new jobs and their lives together two years ago.
Nazmeera, 25, had a normal pregnancy. “I think the disease is so uncommon that they don’t do prenatal tests for it unless there is a reason,” she said.
Unbeknown to her, there was a reason. When she was younger, her mother had told her about her brother who died when he was 6 weeks old after suffering extreme skin blisters.
“I was a year old when my brother died and my mom only told me about it when I was old enough to understand death, just for me to know I had a brother, not because she knew anything about his disease.
“We now know it is genetic,” said Nazmeera. “In fact I don’t think he was ever diagnosed, it’s just that when we saw Abubakr’s skin, it was just like how my mother had described my brother.”
Knowing her brother had only lived for a month-and-half, Nazmeera said she was scared she would lose her son.
“But God had a better plan for him. It is by God’s grace that our baby is otherwise healthy. He has a lot of people praying for him.”
They consider themselves blessed that they have been chosen to raise “such a special child”.
Abubakr can only wear 100% cotton clothes, special nappies and is bathed once in three days to avoid “handling him too much”. His parents moved back to KwaZulu-Natal so Arshad’s mother could help them look after him.
“We can’t use any soap, powder or ointments. We bath him in potassium. My mother-in-law holds him because we can’t put him in the water, which has to be lukewarm, almost cold. I use a cup to gently pour the water and clean him with cotton wool,” Nazmeera said.
Akbar said they used mittens to protect their baby’s hands to avoid him touching or scratching his face. Abubakr’s gaze wanders as his mother points out new blisters caused by him rubbing his legs and feet together in play.
Once burst, the wounds leave him exposed and susceptible to infection. They use specialised gauze, ointment and bandages.
“We were taught how to dress the injuries by a specialist wound nurse but when we go to doctors for help, we end up having to tell them about the disease,” Nazmeera said. They are desperate for expert support or to hear from other sufferers.
They were given some assistance by a woman in her 20s who has the disease. “She was a great help and we take each day as it comes, learning along the way. We know there is no cure but our main concern is that no one can really tell us how best to look after him so that he is comfortable,” she said.
Professor Jamila Aboobaker, retired head of dermatology at UKZN’s Nelson R Mandela School of Medicine, said this was a genetic disease for which a prenatal test was not done in South Africa.
“The disease can go from mild to fatal. The blistering can be severe and painful affecting mainly the hands and feet,” she said.
She said the Durban heat made things more difficult.
“Although the outlook is poor, in some cases a child will survive if handled with kid gloves and given the right care.”
Daily News