The story of Danielle
Zahra Beau Naqvi was born in 2011, she was a beautifully peaceful baby girl with deep soulful black eyes, rich red lips and porcelain white skin.
This beautiful baby, with a dark secret inside, was born in the North of Pakistan and abandoned at birth. Within a few hours she was adopted by Danielle and Akber and showered with so much love. The new parents hearts were filled with joy as they had been waiting to become parents for a while.
But that fairytale was cut short as Zahra’s dark secret, a rare metabolic disease inherited at birth through the misfortune of her birth parents’ genes, would come rushing back to claim her life.
In just 3.5 short months from her birth, having overcome so many obstacles to just find love, Zahra’s final battle was upon her – to beat a rare disease called Glutaric Academia Type 2.
At 4 months old Zahra Beau Naqvi, died on February 18th, 2012, leaving behind heartbroken parents and a family and friend network deep in shock.
A baby girl, one who had so much passion and fight to live, one who had so many odds stacked against her, fought for 17 days in ICU in her new home of Dubai till the bitter end. Betrayed by her body, she willed herself to live, to beat a disease that was incurable due to not being detected at birth. She never gave up; her parents never gave up until time eventually ran out on the fight.
Zahra Beau could have lived and beaten her ultimate obstacle if doctors 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.
From this painful experience comes the birth of The ZB Foundation, set up by Zahra’s parents in her memory and spirit and designed to give other babies the chance that Zahra never had herself. On the wings of an angel the The ZB Foundation is gaining momentum throughout Pakistan, a country which has never offered this life saving test. The ZB Foundation are the pioneers for new born screening in Pakistan.
What is New Born Screening
New born screening is a form of preventive health care in which babies are tested within the first 2 days of their life to discover evidence of diseases for which the principal symptoms may not be apparent
In certain serious congenital metabolic disease 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 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 when the baby is about 2 days old and has started taking milk.
It is important to recogonise that the newborn screening process involves far more than just the screening. The institution of a program requires that systems are 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 important, a system must be in place to ensure babies with confirmed disorders receive the timely treatment that they require.
What we do at The ZB Foundation
New Born Screening is available in every country in the world except Pakistan. Its a birth right in most countries especially the west and paid for by each countries governments.
The heel prick tests are our main focus at the foundation, however we have the capacity to test upto 40 different diseases. We also provide detailed education to Drs / hospitals and the public of the importance of screening your child and not to be affraid of a simple blood test.
Tests provided
The ZB Foundation have its own screening lab in Islamabad, Pakistan. Over the last 2 years we have tested over 10,000 babies and work in conjunction with many hospitals in Islamabad and the North.
Hospitals we are working with:
Lady Reading Hospital – Peshawar
Hayatabad Medical Complex Peshawar
Khyber Teaching Hospital Peshawar
DHQ Hospital Charsadda
KRL Hospital Islamabad
Federal Government Poly Clinic
Pakistan Institure of Medical Science – Islamabad
Intergrated Health Services Children’s Hospital Islamabad
Rehman Hospital Bhimber
Umer Hospital Faislabad
Combined Military Hospital Lahore
Izzat Shah Hospital Wah Cantt
Benazir Bhutto Hospital Rawalpindi
Armed Forces Institute of Pathology Rawlpindi
Medicare Hospital Rawalpindi
The ZB Foundation operates on 100% donations and is non profit. The founders who are not from a medical background and the ZB Team have kept our determination and through consistent efforts have licensed and registered the charity, aligned ourselves with hospitals and we are the only new born screening unit in the country that offer this service for free, testing babies in our own unit using our own machines. Next we aim to set up a training programe for midwives spanned over the country.
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