The death of their first child, Zahra Beau, encouraged Danielle and Akber Naqvi to set up a Foundation in her name to try and save the lives of others.
Baby’s devastating death was the foundation of charity to save other lives
“When people ask if I have children I tell them I am a mother of four, but I have three children,” says Danielle Wilson Naqvi.
Her first child, Zahra Beau, was just three months old when she died.
She had been adopted by Danielle and her husband when just hours old. Her death in February 2012 was made even more unbearable for her parents because the condition that killed her could have been easily diagnosed and treated if she had undergone newborn screening.
Now Danielle, 37, and her husband Akber, 38, from Pakistan, are using their experience to help thousands of other children avoid their little girl’s fate.
“From when I first met my husband I always said I wanted to adopt, I had wanted to do it all my life,” says Danielle, manager of a public relations firm.
“There are a million baby girls abandoned in India and Pakistan each year. I said, ‘as soon as we get married we are doing this’. We got married in September 2010, and by October I had our first meeting to start the process.”
The couple underwent screening in accordance with the 1993 Hague Intercountry Adoption Convention, developed to ensure the best interests of the child are served when prospective parents are not living in the child’s country, and to prevent sales, trafficking or abduction.
Pakistan is not a signatory to the convention, but the Naqvis wanted to make sure they had done everything they could to make the adoption safe and legal.
“It is very in-depth,” says Danielle, who moved to the UAE with her father almost 20 years ago. “You have to have 10 years’ worth of police reports, house visits, psychological tests, bank statements and tests on each other. You have to show that you are a strong unit and doing it for the right reason.”
To adopt a child from Pakistan, at least one of the parents must be of Pakistani origin.
“On October 8, 2011, we got a phone call saying, ‘a baby has been born, come and get her’,” Danielle says.
Zahra Beau, as she was later named, was born in a busy hospital outside Islamabad and was just hours old when she was introduced to her new parents.
Danielle and Akber, a fund manager, were not given any information about her birth mother, her family’s medical history, or the circumstances that led to her being given up for adoption.
As far as they were concerned, they had the little girl they both so badly wanted so the lack of information was not a serious problem.
“When we got there, that minute my mother-in-law hands me my baby and says, ‘here’s your baby’, I broke down,” says Danielle.
“She was just the most beautiful baby. I didn’t know what type of baby I was going to be given, I didn’t care. I just knew that whichever baby I got, she was from my heart.
“She made my heart melt. We slept on the bed together and she held both my fingers, and we slept face to face. I my dreams came true and my husband was overjoyed.”
Zahra had basic medical tests before being taken to Dubai two weeks later. There are no blanket programmes for newborn screening in Pakistan, despite the high prevalence of genetic and congenital diseases.
Newborn screening, or the heel-prick test as it is known, was introduced in the United States in the early 1960s and has been introduced in many other countries, including the UAE and parts of India.
The most common test looks for a list of conditions that can exist without being clinically evident in a newborn.
A small sample of blood is taken from the baby’s heel within the first few days of birth, looking for problems including sickle-cell anaemia, phenylketonuria – when a baby cannot break down protein in food and milk – and cystic fibrosis.
“In the time that we had done all our paperwork I had researched every single disease and about whatever could happen when I got my child,” Danielle says.
“I thought, ‘when we get back to Dubai I will take her to the doctors and get her checked out’. I didn’t know where we were getting her from, the city or from the middle of nowhere.”
Zahra’s parents registered her with a paediatrician who came recommended from friends, but he did perform a heel test, which although later than the recommended time would still have been somewhat effective.
After receiving a clean bill of health for their daughter, Danielle and Akber spent the next few months just enjoying her.
But in February 2012, just three months after bringing Zahra back from Pakistan, her health deteriorated suddenly and seriously.
“She never cried, but one day she was crying badly and drooling so much. I went back to the doctor who changed her formula.
“That night she went to bed as normal and my husband flew to Pakistan for a family funeral. By the time Zahra and I woke up, she was blue.
“I threw her in the seat in the car. She wasn’t breathing. I worked out the quickest way to the hospital. They called code blue.
“She was so anaemic they couldn’t find a vein. Yet she had been with her doctor less than 24 hours before.”
Zahra’s condition worsened as doctors struggled to work out what was wrong. She spent two weeks in intensive care before a doctor diagnosed a metabolic disorder, glutaric acidemia Type 2, which meant she was not able to properly break down food.
This would have been found by a heel-prick test.
By the time it was diagnosed, it had done too much damage for her to survive. She died in hospital on February 18.
“She was responding with her eyes but her body had gone,” Danielle remembers. “That night she died and my world just ended because she had gone.
“It was the cruellest, hardest time. My heart broke that day. I had become her mum and I couldn’t save her. My husband and I were shattered.
“I was very angry. I had to give this love and sadness to another child.”
Danielle’s heartbreak was eased somewhat after she and Akber were told there was another baby, later named Amara Beau after her older sister, who needed a family, just a month after Zahra’s death.
Another three months later the couple discovered they were expecting twins, a boy and a girl, who they named Rio and Sienna and were born on March 18 last year.
“Zahra was our angel,” Danielle says. “She has given us so many things since she died. I have gone over and over it in my head. Of all the babies who are adopted in Pakistan, why did my baby only live for three months? She was here for a reason and she wants us to save other lives.”
In January last year, eight months pregnant with the twins, Danielle and Akber set up the ZB Foundation.
“I decided I had to do something to make sure this doesn’t happen again,” says Danielle. “Our aim is to provide newborn babies with a newborn-screening heel-prick test in Pakistan, free of charge, to every baby born.
“There are so many babies dying and they don’t know what they are dying of.”
Danielle and Akber have already secured one PerkinElmer machine to test blood swabs, a room in Shaukat Khanum Memorial Trust Hospital, soon to open in Peshawar, and a network of specialists across Pakistan who can help to train other staff in the tests.
Its board of directors also includes Dr Toni Terresani, one of Europe’s leading pioneers in newborn screening, and Dr Bushra Afroze, of the department of paediatrics and child health at Aga Khan University.
King Faisal Hospital in Saudi Arabia has agreed to help with screening tests and a hospital in Abu Dhabi has agreed to train medical staff from Pakistan, whose trips would be funded by the foundation.
“Some doctors in Pakistan know about the heel-prick screening because they were educated outside the country, others don’t know about it at all,” Danielle says.
“Our first challenge is to educate the doctors and bring them on board. Once they are on board we need to start giving them the cards for the blood samples that are put through the machine.
“We also need a network of specialists. We can’t just diagnose a baby then walk away. We have to follow it through and assist in the whole medical process, ethically. We need to get doctors on board to help with this.”
The foundation is officially registered and has bank accounts in Pakistan and the UK.
This year, Danielle and Akber organised a conference on newborn screening in Zahra’s birthplace, Peshawar, which was the start of their awareness campaign.
For Danielle, it is the only way she can live with the death of her baby girl and feel close to her daughter.
“I’ve gone over and over it in my head asking why Zahra was a sick baby. I’ve realised she was here for a reason and she wants to us to save other lives.
“Having three children keeps me very busy but doing the foundation keeps me close to her, and makes my husband and our families feel close to her.
“When something is meant to be, it’s meant to be, however it comes to fruition. I believe we are meant to be doing this.”
Visit thezbfoundation.com for more information on newborn screening and find out about donating and spreading awareness about the campaign