Absolutely Mama gets the lowdown on a Dubai-based charity working to save newborn babies in Pakistan
Words Holly Kirkwood and Dani Wilson
The ZB Foundation is a charity set up in the memory of an adopted baby who didn’t survive her first year, because of the lack of proper testing for newborns in Pakistan. Zahra Beau Naqvi, born in 2011, was a beautifully peaceful baby girl with deep, soulful black eyes, rich red lips and porcelain white skin. She had been born in Pakistan and abandoned at birth, but within a few hours she was adopted by Dani Wilson and her partner in Dubai, who had been longing for a baby for years.
Unfortunately that fairytale was cut short immediately, as ZB’s dark secret turned out to be a metabolic disease gained at birth through the misfortune of her birth parents’ genes. In just under four months after she was born, in 2012, Zahra died of Glutaric Academia Type 2.
What makes all this so much worse is that ZB could have lived if doctors in Pakistan had performed just one simple ‘heel-prick’ test known as “New Born Screening”. This test would have shown enough red flags to warrant further investigation, which most likely would have led to the discovery of the metabolic disorder within her early days.
But some good came out of this terrible tragedy. The ZB Foundation was subsequently set up by Zahra’s parents in her memory, with the mission of giving other babies in Pakistan the chance that Zahra never got herself through fighting for newborn screening.
What is New Born Screening
Newborn screening is a form of preventive health care in which babies are tested within the first two days of their life, to check for diseases which may not otherwise be apparent.
In certain cases of serious congenital metabolic diseases, the correct treatment given quickly can prevent death, development disability or other serious problems. Most of the children suffering from these very rare diseases appear to be completely normal at birth.
In order to start treatment before symptoms appear and before permanent damage has time to to develop, screening tests are used to detect the earliest signs of the disease. Only by testing all babies can we be sure of finding the few sick babies, for whom early recognition and treatment of the disease is vital.
Screening is simple- the test is carried out with a few drops of blood taken on blotting paper, but there also has to be an adequate set of systems in place for the efficient collection of samples from all newborns, for the reporting of results and possible recall of a child for diagnostic testing. Most importantly, babies with confirmed disorders receive the timely treatment that they require.
The ZB Foundation and its work
New Born Screening is available in every country in the world except Pakistan. Its a birthright in most countries especially the west paid for by each country’s government.
The heel prick tests are our main focus at the foundation but they also provide detailed education to doctors and spread the word to the public about of the importance of screening.
Challenges of newborn screening in Pakistan
One of the biggest challenges so far has been the bureaucracy in Pakistan. To setup a charity and enable the charity to carry out its functions requires passing a lot of red tape.
The ZB Foundation has collaborated with Vik Jethwani Fine Jewellery in Dubai with a limited edition 2017 #astarisborn bracelet, putting the sparkle into providing new born screening tests. The bracelet is 18K gold with a pink Sapphire in the middle of the star.
The bracelet costs AED 850 and is available to order via @vikjetfinejewellery
For more information on how you can support The ZB Foundation visit www.thezbfoundation.com