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An organization founded and set up after the untimely demise of baby girl Zahra Beau – due to Glutaric Acidemia Type 2 – from Northern areas of Pakistan by her parents Mr. and Mrs. Akber Naqvi who adopted her, The Zahra Beau Naqvi Foundation Welfare Trust, an International NGO, aims to introduce, implement and propagate Newborn Screening program in Pakistan, considering it as a birthright of every baby born in Pakistan. At ZBF, their aim is to have no baby spared of this test at all costs because to us it is not just a sample, it’s a baby.
Though there has been work recorded as of being done as projects at various universities in Pakistan particularly at Agha Khan University, however, this is the first time that such a program has been commercialized in Pakistan that belongs to the Developing World. Newborn Screening (NBS) might be a new concept for Pakistan and developing countries but it is comparatively old for the developed world.
There every child, that is born, is getting screened within 72 hours of birth since more than a decade. The ZB Foundation is the only organization that provides newborn screening tests free of charge for all babies born in Pakistan. They are currently working with about approximately 25 hospitals in Punjab and KPK, and they aim to branch out even further. By the end of the year, they aim to work with The Edhi Foundation (Karachi) in order to test every abandoned baby that is brought into the Edhi center.
The Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), part of the U.S. Department of Health and Human Services, recommends that all newborns be screened for 34 core disorders and 26 secondary disorders. The tests are organized into broad categories:
- Metabolic disorders (There are more than 50 inherited metabolic disorders)
- Endocrine disorders
- Hemoglobin disorders
- Other disorders that include hearing and vision tests
The first official gala dinner for The ZB Foundation took place on the 12th October 2017, at the renowned Marriot Hotel, Islamabad, dignitaries from all walks of life, including, government, celebrities, diplomats, business people, researchers and the medical community – all came together to honor a new cause that aims to change the lives of every newborn baby born in Pakistan sponsored by Nutricia, Unilever – Lifebuoy and the Hashoo Group.
The ZB Foundation Gala Dinner not only raised awareness regarding this critical baby issue but also brought to attention how a grassroots effort can make a change and positively impact the healthcare sector of Pakistan.
