Real life

Danielle Wil­son Naqvi doted on her adopted baby, so when the lit­tle girl fell ill and died aged three months from an ill­ness that could have been de­tected at birth by a sim­ple test, she vowed to make sure other new­borns didn’t suf­fer the same fate. By Gem

Friday - - Contents -

A mother who re­alised a sim­ple test could have saved the life of the baby she adopted from Pak­istan is now on a mis­sion to make sure no other child there suf­fers the same fate.

Danielle Wil­son Naqvi looked on hope­lessly as her newly adopted baby lay fight­ing for her life in an Al Ain hos­pi­tal in­ten­sive care unit, her frail frame seem­ing to drown un­der the med­i­cal tubes cov­er­ing her tiny chest. Weeks of an­guish­ing visits to the doc­tor had proved fruit­less in de­ter­min­ing what had led to Pak­istani-born Zahra Beau’s spi­ralling de­te­ri­o­ra­tion. What had started as lethargy at just a few months old had quickly plunged into bouts of vom­it­ing, ex­ces­sive drool­ing and dis­tended bloat­ing..

Zahra Beau’s adop­tive par­ents Danielle,, 36, and Ak­ber, 37, had taken her from one doc­tor to the next, the frus­trat­ing lack of an­swers elic­it­ing un­con­trol­lable anx­i­ety for them both. Fi­nally, on a rushed visit to the Emi­rates Hos­pi­tal emer­gency room af­ter Zahra Beau’s drool­ing had drenched her mother’s top and the re­lent­less vom­it­ing had turned into sin­is­ter chok­ing, doc­tors asked the ques­tion that would spear­head im­me­di­ate treat­ment – was Zahra Beau suf­fer­ing from a meta­bolic dis­or­der? “A what dis­or­der?” Danielle asked hys­ter­i­cally “I’ve never heard of that… no one has ever men­tioned those words to me and I’ve been tak­ing her to doc­tors for six weeks.”

Six weeks of con­stant, fu­tile and de­spair­ing med­i­cal visits that had fol­lowed a painstak­ingly long year of wait­ing to adopt their beau­ti­ful baby girl. As Danielle re­calls, “When we met Zahra Beau we fell in love straight away – she was just beau­ti­ful with the cutest fea­tures and pale skin. I didn’t let her go, I held her and wept with hap­pi­ness and never put her down.” And now here she lay hope­lessly, help­lessly, and Danielle felt ev­ery ounce of love within her plead for her lit­tle girl’s re­cov­ery.

And Zahra Beau was her lit­tle girl, from the mo­ment mother and child locked eyes, Danielle had felt that nat­u­ral ma­ter­nal bond. Zahra Beau wasn’t adopted as a re­sult of in­fer­til­ity; she was a heart­felt de­ci­sion, a vow the cou­ple had taken nine years be­fore on their wed­ding day. They wanted to adopt de­spite Danielle’s healthy abil­ity to pro­duce a bi­o­log­i­cal child of her own. Danielle ex­plains, “When we met, we both wanted to adopt a baby. Ak­ber al­ways said we should adopt from Pak­istan be­cause so many ba­bies are aban­doned there ev­ery year and I knew I wanted to have a con­nec­tion with the coun­try I adopted from [while she is Bri­tish, Ak­ber is Pak­istani.]”

The cou­ple’s care­ful years of plan­ning and con­se­quent en­su­ing pa­tience paid off from

the mo­ment Zahra Beau came back to Dubai cra­dled in her par­ents’ lov­ing arms, and within mere mo­ments she had weaved her nat­u­ral charm over both mother and fa­ther. Was it her tiny porce­lain hands that held on so tightly to her mother’s fin­gers, or her lips that al­most seemed to smile know­ing she was sur­rounded by a home filled with love, or was it her beau­ti­ful baby warmth that Danielle could sim­ply cra­dle in her arms for end­less hours? What­ever the mul­ti­tude of rea­sons for this nat­u­ral, in­stant, motherly bond, fate as it of­ten so cru­elly does, chose to in­ter­vene.

Danielle turned the words “meta­bolic dis­or­der” around and around in her mind; so many ques­tions, so few an­swers.

Fran­ti­cally search­ing for a spe­cial­ist, the cou­ple dis­cov­ered Dubai’s Medi­clinic Wel­care hos­pi­tal had the ca­pa­bil­ity to help; how­ever yet an­other stum­bling block lay in their path, the spe­cial­ist was on va­ca­tion. With nowhere to turn they pleaded with res­i­dent nurs­ing staff to con­tact the pae­di­a­tri­cian who, de­spite be­ing on hol­i­day in Fu­jairah, raced back to Dubai to help. Af­ter two weeks of crit­i­cal care and a plethora of tests, the doc­tor as­cer­tained Zahra Beau was suf­fer­ing from Glu­taric Acidemia Type 2, an ex­tremely rare meta­bolic dis­or­der that breaks down the im­mune sys­tem and af­fects just one in 250,000 ba­bies.

If de­tected im­me­di­ately at birth, the dis­ease is treat­able. But Zahra Beau, by now over three months old and only just di­ag­nosed, was in a life-threat­en­ing con­di­tion. Forced to ad­mit the dis­or­der was so un­com­mon there was noth­ing more the hos­pi­tal could do without spe­cific spe­cial­ist knowl­edge, they re­ferred her to the one hos­pi­tal in the UAE with a meta­bolic dis­or­der unit, Tawam Hos­pi­tal in Al Ain.

Fac­ing the worst

There, Danielle and Ak­ber stood by help­lessly for the next four days and watched their lit­tle girl slip away. As Danielle tear­fully re­counts, “Her kid­neys failed, her liver failed, her im­mune sys­tem failed and she started to bloat like a lit­tle sumo be­cause she was car­ry­ing too much fluid. She was in a ter­ri­ble con­di­tion. As you can imagine our world sim­ply ended. She was just three months old and was fight­ing so hard... If you see any three-month-old baby, they’re so spe­cial, they’re so small.”

Yet the con­di­tion was too fierce for even the tough­est fighter and Zahra Beau who had fought with all her ten­der might to hold on to life, died in Fe­bru­ary 2012. “My hus­band and I were heart­bro­ken,” Danielle says. “We couldn’t do any­thing to save her. Our world ended, our an­gel was no longer with us.”

The Naqvis, still reel­ing in a state of shock, were gen­tly guided through an ex­pla­na­tion of their daugh­ter’s con­di­tion, the rare ill­ness that had led to her un­timely death and in numbed si­lenced tried to swal­low the doc­tor’s synop­sis. “If she had been given a heel prick test,” he ex­plained, “this would have been de­tected at birth and she would have sur­vived. Her life would have been dif­fi­cult and if she’d caught even the slight­est cold she would have been ad­mit­ted to an in­ten­sive care unit but ul­ti­mately, she would still be here today.”

The words hit them like a slap in the face. A sim­ple test that is manda­tory in all hos­pi­tals across the UAE and theWest would have saved baby Zahra Beau’s life.

A cheap, ef­fec­tive pin prick taken from a new­born heel that as­cer­tains whether up to 30 dis­eases are present was sim­ply too ad­vanced and too ex­pen­sive for many hos­pi­tals in Pak­istan. Cer­tainly too costly for the hos­pi­tal in Pe­shawar where Zahra Beau’s bi­o­log­i­cal mother had given birth to a child she was too poor to keep. The news made the bur­den of her death even more ag­o­nis­ing.

Un­ex­pected news

But fate was yet again to in­ter­vene. Ex­actly one month to the day on which Zahra Beau passed away, Danielle’s phone rang – the noise break­ing an om­nipresent si­lence in a house where a pink nurs­ery lay glar­ingly empty and a plethora of baby girl toys lay painfully un­touched. An­swer­ing that call, Danielle says, was some­thing that would change the course of their lives for ever. “It was from our adop­tion agency in Pak­istan telling us a baby girl had been aban­doned. We didn’t think twice, it was meant to be; our an­gel Zahra Beau had given us a baby girl to help us move for­ward.

“Just like the jour­ney to get Zahra Beau, we flew to Pak­istan within a few hours to meet our new daugh­ter Amara Beau. She had the big­gest eyes and long­est eye­lashes I had ever seen, she was so small and beau­ti­ful, I cried so much when I held her, it was an emo­tional roller­coaster as the last baby I had held was my dead daugh­ter.”

Still raw from the pre­ventable loss of her first child, Danielle im­me­di­ately de­manded doc­tors per­form the sim­ple heel prick test, some­thing she dis­cov­ered to her shock was not avail­able in her hus­band’s home­land. “The doc­tors said there was no such thing as a heel prick test in

Pak­istan, it was too ex­pen­sive. It was at that point I knew I had to do some­thing to help. I re­alised there were a mil­lion aban­doned ba­bies be­ing born and not one of them was re­ceiv­ing med­i­cal at­ten­tion at birth.” Not tak­ing any risks, Danielle had the blood test car­ried out there and then and paid for it to be ex­am­ined in Saudi Ara­bia where, af­ter sev­eral days of fraught wait­ing, she was in­formed the re­sults were all clear.

It was healthy, happy Amara’s en­try into their lives and an­other twist of fate that would see Danielle en­sure Zahra Beau’s short and painful life had not been in vain.

Seem­ingly out of the blue, the Naqvis were blessed again. “Three months af­ter we adopted Amara I found out I was preg­nant,” says Danielle. “It was twins – a boy and girl. Since Zahra Beau died things have hap­pened that were just in­cred­i­ble - it was as if she was look­ing over us.”

Hon­our­ing Zahra Beau

In the weeks that passed, Danielle de­cided the time was right to make a com­mit­ment to her late daugh­ter; it may have been too late for one lit­tle princess but there was no rea­son why it should be too late for all the other aban­doned ba­bies in Pak­istan.

“Peo­ple kept telling us that with time we would un­der­stand why our an­gel came to us but left so soon. I still don’t un­der­stand, but my hus­band and I re­alised we had to do some­thing to hon­our her name.

“We de­cided there had to be a rea­son she came into our lives and her legacy had to go on. In her name we set up The ZB Foun­da­tion.”

The char­ity is cur­rently based in Pak­istan, a coun­try no­to­ri­ous for its painstak­ingly long adop­tion pro­cesses, and where, ac­cord­ing to the coun­try’s largest so­cial wel­fare or­gan­i­sa­tion, The Edhi Foun­da­tion, more than 300 dead ba­bies are found ev­ery year in the rub­bish dumps and side streets of Karachi alone. The newly formed foun­da­tion’s aim is to even­tu­ally pro­vide all new­borns across the coun­try with a sim­ple heel prick test, ul­ti­mately sav­ing thou­sands of lives.

The heel prick test, in­vented in 1962 by Robert Guthrie, is a core new­born assess­ment car­ried out as a screen­ing mea­sure when a baby is be­tween 48 and 72 hours of age. The test in­volves a pin­prick on a baby’s heel to col­lect enough blood to de­tect 30 dif­fer­ent ge­netic dis­or­ders such as sickle cell dis­ease, Phenylke­tonuria, a dis­or­der that im­pairs brain de­vel­op­ment, and Galac­tosemia, which can lead to liver fail­ure and brain dam­age. The prick it­self is eas­ily ad­min­is­tered at birth but the new­born screen­ing MS ma­chine which reads the blood test, is the stum­bling block for de­vel­op­ing na­tions. Each ma­chine comes with a hefty re­tail price tag of $600,000 (Dh2.2 mil­lion)

The Foun­da­tion’s goal of get­ting the ma­chines in ev­ery ma­jor hos­pi­tal across Pak­istan is am­bi­tious but the Naqvis are well aware of what lies ahead. “It’s go­ing to be very chal­leng­ing and will take a long time,” ad­mits Ak­ber, “but we are just about to get our first ma­chine. We will send it to Pak­istan and train hos­pi­tal staff how to use it. Then we will

‘Ev­ery day we miss her deeply, but hav­ing a char­ity in her name makes us feel close to her. We know now that our lives will be ded­i­cated to this char­ity and her name­sake’

en­cour­age doc­tors to per­form the test on all ba­bies born in the hos­pi­tal.”

The foun­da­tion is in the process of se­cur­ing its first screen­ing de­vice thanks not only to do­na­tions from fam­ily and friends, but the cru­cial as­sis­tance of the MS ma­chine man­u­fac­tur­ers, which will al­low them to pur­chase the ma­chine on an in­stal­ment ba­sis. The first de­vice will then head to the soon-tobe-opened Shaukat Khanum, politi­cian and for­mer crick­eter Im­ran Khan’s can­cer hos­pi­tal in Pe­shawar.

The Naqvis’ brain­child born out of per­sonal grief is a tale of both tragedy and hope. When one flick­er­ing flame was un­able to weather the storm it may have fallen, but on its way down it lit an­other three. That par­tic­u­lar can­dle was sadly not alight for long, but Danielle and Ak­ber are en­sur­ing one will for­ever burn bright in Zahra Beau’s name. “Ev­ery day we miss her deeply, but hav­ing a char­ity in her name makes us feel close to her. We just know now that our lives will be ded­i­cated to this char­ity.”

Danielle with Zahra Beau, who could have been saved by a sim­ple test done at birth. Left: Af­ter adopt­ing Amara Beau (cen­tre), the Naqvis had bi­o­log­i­cal twins Rio (left) and Si­enna

Zahra Beau’s con­di­tion caused her face and body to bloat

Danielle be­lieves that through the tragic loss of Zahra Beau, she and her hus­band were picked to save the lives of other ba­bies

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