UAE Real Life: “I Lost My Baby But I’ll Save Others”

When Danielle Wilson Naqvi adopted a baby from Pakistan, she never imagined she’d lose her to a rare disease after just a few months. But now she's using the lessons learned from Zahra Beau’s death to help thousands of other children
BySarah SwainFriday , 29 November 2013
© ITP Images
© Rebecca Hobday
© ITP Images
© ITP Images

Danielle Wilson Naqvi will never forget the moment her new baby was put into her arms. “It was the most amazing feeling,” she says. “She was everything I had been waiting for. I hadn’t given birth to her, but I loved her even more so than if I had. She wasn’[t just adopted. She was my daughter. It was instant love.” 

 Zahra was just a few hours old when Danielle, 37, and her husband Akbar, 38, flew to Pakistan to adopt her. Though the couple could have children, they’d always wanted to adopt their first child and were so serious about it, they’d even done a course for prospective adoptive parents. A million baby girls are abandoned in Pakistan and India each year and the couple were keen for their baby to come from one of their native countries – Akbar is from Pakistan, while Danielle is British.

 When Zahra was two weeks old, the couple brought her home to Dubai, and family and friends shared their excitement about the new arrival. “She was just absolutely beautiful. She had lots of hair and full lips, and was like a little dolly,” says Danielle. 

 The new family headed to Danielle’s home in Liverpool, England for Christmas. But when they returned to their home near Safa Park in January last year, they realised something was wrong with Zahra. 

 Intensive Care
“She was throwing up a lot. We went to the doctor, who said she had reflux and to give her a thicker formula,” says Danielle. “The next day, I woke up and Zahra wasn’t breathing – she was blue in her cot.” Danielle rushed Zahra to Emirates Hospital A&E department. Staff there told her Zahra was in very poor condition. She was taken to intensive care and needed specialist help. 

 The couple were then told Zahra was suffering from a metabolic disorder, a genetic disease with life-threatening symptoms. However, it was only days later that they found out Zahra had a rare condition called Glutaric Academia Type 2, which affects only one in 250,000 babies. It interferes with the body's ability to break down proteins and fats. Zahra remained in Dubai for two weeks before being transferred to a Tawam Hospital in Al Ain, which specialises in metabolic diseases. Zahra fought for her life and medics tried everything they could to save her. “We didn’t leave her side,” said Danielle. “They tried everything. She had so many blood transfusions. But her immune system had gone so low. It was just the most heart-wrenching thing.” 

 On 18 February 2012, just 16 days following her arrival in Al Ain, Zahra lost her battle with the disease, aged just four months. Danielle and Akbar were devastated. Danielle admits they also felt bitter about what had happened to them. “We just thought, how can our child die while everybody else’s child is alive? People would say that she came to us for a reason, but I couldn't understand why. And I didn’t believe that to be the truth.”

New Hope
Danielle and Akbar went on to adopt another newborn baby from Pakistan, Amara Beau, who’s now 19 months old. It was after Amara joined the family that something in Danielle changed. She decided she needed to learn from Zahra’s death to help other babies. The couple had discovered Zahra’s life could have been saved if she’d had a simple test received by all babies in the West. 

When a baby is between 48 and 72-hours-old, a midwife will collect a sample of blood by pricking the baby’s heel and squeezing out a few drops of blood onto a card. The card is sent off for analysis and parents receive the results of the test within a couple of days. The blood spot screening test, commonly known as the Heel Prick Test, helps to identify a range of health conditions, including sickle cell disease, cystic fibrosis, PkU and other rare conditions.

This test would have diagnosed Zahra’s disease, enabling doctors to treat the condition with haste, which may have led to her survival. Unfortunately, the test wasn’t administered. 

“I knew I had to start saving babies in Pakistan and that they had a right to receive a Heel Prick Test,” says Danielle. “I just felt that no child should ever have to go through what Zahra had endured again.”

Danielle set up the ZB Foundation a year ago and has just got the first machine needed to do the tests. It’ll go into operation at a hospital in Pakistan next year.  

Though Danielle has single-handedly raised approximately Dhs200,000 towards the cost of this charity operation, representatives from the company that makes the screening equipment for the tests were so impressed by what she was doing, they donated a machine worth $1 million to the foundation. 

But the couple, who have since had biological twins Sienna and Rio (now seven months old), still need to raise money as each of the tests costs Dhs150. “You can’t pick and choose which baby will have the test,” says Danielle. “This test is a matter of life and death. Every child has to have one and our charity will pay for it.”

Danielle also plans to hold a conference next year to educate doctors and nurses about the tests. Eventually, she wants every baby born in Pakistan to have a newborn screening test. And it’s all for Zahra Beau. “She’s the driving force and she’s making it happen,” says Danielle. “We live every day for her. I never thought I would be a mother of a deceased child. I never thought I would be running a charity in Pakistan. But I have to do it.” [end icon]

INFO: Find out more about Danielle’s charity including ways to donate and educate the people of Pakistan, by visiting www.thezbfoundation.com