“My baby had no skin on his lower limbs”
What is it like caring for a child whose fragile skin might blister and tear with every touch? One mum shares her story with EVELINE GAN.
Even before Muhammad Raed (pictured) received his rst cuddle or tasted breast milk, morphine – a potent painkiller – was already coursing through his tiny 2.68kg body.
At birth, little Raed’s shrill cries not only announced his arrival into the world; they also told of the unimaginable, excruciating pain he suffered due to a rare genetic skin disorder known as epidermolysis bullosa (EB).
Now approaching two years old, Raed was born with no skin on his lower limbs, back and hands.
In the rst few weeks of his life, he relied on strong medication around the clock to dull the pain from his raw, open sores.
Often dubbed one of the cruellest diseases a person can be aficted with, EB is an incurable genetic disorder that causes the skin to tear and blister at the slightest trauma.
Little ones like Raed are often known as “buttery children” because of their extremely fragile skin, which tears as easily as buttery wings do at the slightest friction. Raed’s condition is considered a severe type of EB, known as junctional EB.
Lifting him by the armpits can lead to blisters in the area, friction from a quick ip of his hand may tear off skin, while simple everyday items like clothing labels could lead to sores.
A living hell
“The pain children with severe EB endure every single day makes life a living hell,” says Ritu Jain, president of Debra Singapore, which is part of a worldwide network of EB patient-support groups. “We’ve seen some children who are highly dependent on morphine to help them cope with the pain.”
Raed’s parents did not know they were both “carriers” of the recessive EB gene until he was born.
Nurzeehan Abdul Halim shares that her son had seemed perfectly healthy during pregnancy scans. But she soon realised something was amiss when the nurse did not hand him to her immediately after he was delivered.
“The doctor said it might be better for me not to see him yet. Initially, I thought he was born handicapped,” recalls Zeehan, 26, a nurse.
At rst glance, Raed had appeared ne to his mum as most of his body was covered by a piece of cloth.
His exposed feet, however, told a different story. Where a protective layer of skin ought to have been, there was raw esh.
Despite the shocking image, the stoic mum says that her nursing background enabled her to remain calm.
“Not once have I been in denial about my son’s condition. Because of my profession, I am able to accept it and try to nd a way to move on,” adds Zeehan, who got to hold her baby only a month later.
Raed’s condition makes it impossible for anyone to give him a hearty hug or embrace him tightly; the pressure from those intimate, loving touches may risk painful skin tears and blisters.
Only four people – his parents, Grandma, and the domestic helper – are permitted to carry him using techniques that do not apply too much pressure on his skin.
“Up to about seven months, we were still carrying him like a newborn baby – in the cradle position. We couldn’t simply just lift or hold him the way most parents do with their babies,” shares Zeehan.
“Until now, we don’t allow friends or relatives to carry him because we can’t afford to take the risk.”
The financial and emotional toll
While Zeehan’s nursing background has helped her accept and tackle Raed’s condition more readily, it doesn’t make things easier.
For the rst-time mum, “horrible” doesn’t even begin to describe the insurmountable challenges she faced in the rst year of Raed’s life.
For one, EB is a rare disease which has no standard treatment or cure. The focus is often on troubleshooting symptoms, pain or infections whenever they crop up, so his parents are constantly on their toes watching out for new wounds or any signs of infection, which can be potentially deadly.
Especially important is proper wound care, which typically involves an elaborate, time-consuming routine and is nancially draining.
In the rst 10 months of Raed’s life, his parents spent approximately $3,000 each month on his wound dressings, not counting the medical bills they chalked up whenever he came down with a bug or had to be hospitalised.
“One roll of dressing costs $88 and lasts only three days. You can’t even bring these products in from the US, where they are considerably cheaper, because they are considered medical supplies,” says Zeehan. These outpatient costs are not Medisave-claimable.
She also had to cope with extreme physical exhaustion from caring for Raed.
After juggling nine-hour work shifts at the hospital, Zeehan would return home and devote four to ve hours each day to bathe him and dress his wounds. In the day, Raed is cared for by his grandmother and helper.
“The whole process takes so long because you can’t rush it; you have to remove his dressings very slowly using forceps. You can’t even towel-dry him normally because any vigorous rubbing would tear his skin,” she shares. “Every movement has to be slow and gentle.”
Bath times were particularly traumatising for Raed then, because he would “scream in pain” when the water