Danielle and Akber Naqvi, residents of Dubai are the founders of The ZB Foundation a charity providing all babies born in Pakistan with a New Born Screening Test.
1. Why did you decide to set up the ZB Foundation and what do you hope to achieve with it? In February of 2012, we lost our daughter, Zahra Beau, to a metabolic disorder when she was only 4 months old. Her disorder may have been diagnosed at birth and she may still be alive today if we had carried out a simple test at birth. This test is called a heel prick test (also known as new born screening) and is mandatory in developed healthcare systems but still not applicable in developing or poor healthcare systems. Because ZB never had this test, we could not diagnose her disease in time, resulting in her death. Through this painful experience, we realized that in a country like Pakistan, with a poor healthcare system, many babies are dying because they have no access to heel prick tests. Through our own pain and discovery we realized that to keep ZB’s spirit alive, we had to start a foundation that was a pioneer in introducing heel prick testing and new born screening to the Pakistani population.
2. Why was there a need for a foundation such as the ZB Foundation? Around 4.5million babies are born in Pakistan each year (to put that in perspective, that’s the total population of New Zealand); majority of these babies will not have access to new born screening meaning a very large number of babies will be born with inborn diseases that go undetected and will come back to harm them either very early on in their life or later on their life with no explanation as to how and why it happen. In a poor and underdeveloped healthcare system like Pakistan, with minimal government support, it is left to the private sector to provide necessary and life saving solutions. The ZB Foundation is fulfilling this role by providing one of the original new born screening systems in Pakistan.
3. Have you seen that the ZB Foundation is helping and making a difference? It has been a difficult and tough process. It not only involves educating the people/parents about the benefits of a NBS system but, incredibly, it also involves educating the doctors about the NBS system. Many doctors in Pakistan do not recommend the test because not only do they have no access to the screening technology and machines but they also feel like they are burdening the parents with an extra test. Part of our education has been to re-teach doctors that this test is a necessity and it is in the best interest of the baby. We have realized that apart from providing the actual screening system, we also have to be the main voice for NBS in Pakistan and make it a topic of understanding for both parents and doctors.
4 What are your next plans and what do you hope to achieve with the ZB Foundation in the future? We are currently setting up our first pilot new born screening project which will based be in Islamabad and will partner with a large military hospital. We are setting up a comprehensive screening, diagnostic and treatment process that doctors can use on a consistent basis, meaning all the babies born at the hospital will automatically be entitled to a heel prick test. One of our key partners is Perkin Elmer who have graciously provided the first NBS machine that we will be using in this pilot project; this is one of the latest NBS machines and can test up to 30 diseases. Another of our key partners is Nutricia and we are working with them on increasing the awareness of NBS, spreading the message and providing education material to parents and doctors. Nutricia will also help us with the treatment of babies that are diagnosed with a disorder. Our plan is to expand our Islamabad pilot project and start similar projects in other major cities. Eventually, we want to have a nation-wide NBS system in place giving every baby born in Pakistan their birth right which is access to new born screening and a test that could end up saving their lives.
To find out more about the ZB Foundation and to follow the journey visit www.thezbfoundation.com
babysouk.com in an effort to help children wherever we can, will contribute AED 5 from every purchase in order to support this foundation.