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
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.
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