A Mother's Nightmare
When people ask Danielle Wilson Naqvi about her family, "I tell them I am the mother of four," says the transplanted Englishwoman who lives in Dubai with her husband, Akber. Tragically, only three of the couple's children are alive today. The fourth, Zahra, meaning beautiful in Arabic, was a newborn baby girl the couple adopted in Pakistan, Akber's native country. The Naqvis made a pact before they married to adopt a Pakistani girl. Akbar told his wife that of the estimated 4.5 million newborns born each year in Pakistan, countless thousands of infant girls are abandoned at birth. 1
"This is why we chose a baby girl, we didn't want to deny at least one girl a chance at love and life," Danielle says. That decision proved to be a life changing one. Shortly after returning home with their adopted daughter, the Naqvis brought her to a local doctor for a checkup. Discovering that Zahra had an enlarged liver, the doctor inquired about the results of the little girl's heel-prick blood test.
"At that stage, we had never heard of a heel-prick test," Akbar Naqvi says in a YouTube video the couple made in 2014 to document their experience. 2
They are not alone. While newborn screening for metabolic disorders is commonplace in most parts of the developed world, Pakistan is one of the few countries that does not normally provide the heel-prick blood test. As the Naqvis learned, that proved to be devastating.
Zahra was eventually diagnosed with a rare autosomal recessive disorder called Glutaric Acidemia type II (GA-2). Affecting one in 250,000 newborns, the disease blocks the natural breakdown of proteins and fats into energy. Left untreated, GA-2 can cause weak muscle tone, severe heart problems, and death. At the age of four months, little Zahra died from complications of the disorder.
The ZB Foundation and PerkinElmer
Following Zahra's passing, the Naqvis decided to commemorate their daughter's young life by creating the Zahra Beau Foundation. Based in Pakistan, the ZB Foundation as it is known, works with the Pakistan Institute of Medical Sciences (PIMS) Children's Hospital in Islamabad and global newborn screening leader PerkinElmer, which had tried unsuccessfully to introduce newborn screening technology to Pakistan on its own for years. With the help of the Naqvis' tireless efforts to cut through government red tape, PerkinElmer was able to provide the necessary newborn screening instruments, test kits, and training to begin offering free heel-prick tests for five metabolic disorders to all children throughout Pakistan. Under the overall direction of Dr. Ali Raza, Director Child Health, the new screening initiative is already building a database of heel prick test results and launching an ongoing educational program in support of newborn testing in Pakistan. 3
Ambitious? You bet it is, but do not underestimate the power of a mother's love for her children.
"My daughter would be alive today if she had a heel-prick blood test," Danielle says. "She did not, and I aim to never let another child in Pakistan die from something that can be prevented."
"It needs to be a birthright," Akber says, adding that Zahra came into the couple's lives for a reason and left for a reason.
"We lost Zahra, but she is my motivation," Danielle says. "I realize I am now her voice." With the ongoing help of PerkinElmer's newborn screening expertise and instrumentation, Danielle and Akbar are determined to turn their personal tragedy into triumph for future generations of Zahra Beaus yet to come.
- Leana ter Laar, "She Inspires Me," Good Housekeeping, September, 2014.
- Danielle Wilson Naqvi, "ZB Foundation," YouTube, accessed May 22, 2016.