My baby was born without skin on his lower limbs, back and hands My baby was born without skin on his lower limbs, back and hands
Even before Muhammad Raed received his first cuddle or tasted breast milk, morphine – a potent painkiller – was already coursing through his tiny... My baby was born without skin on his lower limbs, back and hands

Even before Muhammad Raed received his first 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 first 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 afflicted 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 “butterfly children” because of their extremely fragile skin, which tears as easily as butterfly 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 flip 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 first glance, Raed had appeared fine 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 flesh.

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 find 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.”

Henry Okafor

  • Suzanne Fleming

    2017-08-10 #1 Author

    God bless you baby xx

    Reply

  • Kieana Hamilton

    2017-08-11 #2 Author

    This hurt my heart. I hope the recovery is fast…OMG 😩😭😔

    Reply

  • kima

    2017-08-11 #3 Author

    awee prayers for the baby 😩🙌🏽

    Reply

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