The gift of hope
Time Out Kids meets the mother behind the ZB Foundation, which aims to provide essential newborn screening to babies in Pakistan’s poorest regions
When their adopted baby daughter Zahra Beau sadly passed away, her parents Akber Naqvi and Danielle Wilson Naqvi set up the ZB Foundation in her honour. Zahra was suffering from Glutaric Acidemia Type 2, a metabolic disorder that affects just one in 250,000 babies. Yet had she been screened at birth with a simple heel prick test, markers would have shown up an abnormality which would have warranted more tests, meaning she could have had the vital treatment she needed from the outset.
While newborn screening using a heel prick test and a device called an MS machine is a routine part of infant care in the first world, in Pakistan where Zahra Beau was born, this type of testing is not available. The ZB Foundation hopes to raise funds to run such a facility in the northern Pakistani hospital where Zahra was born, with the ultimate aim of providing this vital newborn care in every hospital through the rest of the country, too.
‘This is the same screening that most of us already have access to,’ explains Danielle. ‘In the West, newborns would be given these tests within the first five days as a matter of course. It is a very simple procedure – they just prick the baby’s heel, and put the drop of blood on a card, which is then run through the MS machine. The results come back straight away. There is nowhere in Pakistan that currently offers this service. When we adopted our second daughter, I had to organize this myself and send the results to Saudi.’
These essential tests use a brand new technology known as ‘tandem mass spectrometry’ to identify more than 30 disorders in newborn babies. Serious illnesses that the tests pick up include: cystic fibrosis, the inherited disease that affects internal organs, particularly the lungs and digestive system; congenital hypothyroidism, a rare disease that can impair both physical and brain development, but is treatable if caught early; sickle cell disease, an inherited blood disease that needs treatment from the outset to prevent serious illness; and phenylketonuria, another rare condition that can cause mental disabilities, but is treatable if diagnosed.
While the heel prick can cause some minor discomfort to the baby while the tests are taken, it doesn’t require the more extensive blood sampling of earlier tests that were available and, most importantly, the screening using the MS machine is fast, accurate and comparatively cheap. While sending the tests off to Saudi cost Danielle the equivalent of Dhs200, in Pakistan’s poorer provinces, this could equate to a family’s entire weekly or even monthly earnings. ‘This is why, through the foundation, we’re looking to get hold of either new or second hand machines, and want to sponsor a room in the hospital, as well as providing training to a hospital worker that can take the tests and man the machine. The reason we’ve started with the Northern province is because it is so poor and that’s where Zahra was born. We don’t want people to pay for the service, and through raising awareness and getting the right support both here and in Pakistan, it’s a project we’d eventually like to expand through the whole of the country.’
While the foundation’s initial task is to raise sufficient funds to buy the MS machine, it by no means ends there, explains Danielle. ‘We’ll need help with organizing shipping and customs for example, and will be working with supportive companies here in the UAE, as well as organizing an awareness event during 2013.’ One of the largest challenges that the ZB Foundation faces is connecting with the right supporters of their cause, both here in the UAE and in Pakistan, who will help raise vital awareness within Pakistan of the importance of these essential tests. ‘We know that it will save a lot of babies’ lives,’ says Danielle. ‘The hospitals themselves aren’t that bad, they just don’t have the kind of funding available to offer these kinds of tests to newborns. We want to give these babies the same start in life that we take for granted.’
To find out more about fundraising or raising awareness of the campaign, or to support the ZB Foundation, log on to www.thezbfoundation.com
Time Out Dubai,