“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.

Young Parents (Singapore) - - THE BABY YEARS -

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 aficted 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 “but­tery chil­dren” be­cause of their ex­tremely frag­ile skin, which tears as eas­ily as but­tery 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

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