The families of children facing life threatening heart defects have told of their joy after free surgery was given to underprivileged youngsters by an Abu Dhabi hospital group.
Fifty children have been offered free medical care for serious heart conditions by Dr Shamsheer Vayalil, founder and chairman of Burjeel Holdings, one of the UAE’s largest private hospital providers.
The Golden Heart initiative focused on children impacted by conflict and underprivileged backgrounds, spanning cultural and geographical boundaries to mark entrepreneur MA Yusuffali's 50 years in the Emirates.
Dr Vayalil is married to the daughter of Mr Yusuffali, who is managing director of the LuLu Group, and launched the scheme to provide surgeries at public and private hospitals in Tunisia, Egypt, and India.
One of those was three-year-old Fathima Hassan from Malappuram in Kerala, India, who had Cornelia De Lange Syndrome diagnosed, a rare genetic condition that restricts growth and development.
Her condition was so severe that her heart failed to grow properly, leading to atrial and ventricular septal defects.
A week after surgery at Lakeshore Hospital – a five-hour drive from the family home – and Fathima is beginning her long road to recovery.
Her father, Fasalu Rahman, was told of the Golden Heart initiative by a friend in Abu Dhabi working at Lifecare Hospital in Musaffah.
“We discovered Fathima had an issue as soon as she was born, and we have been trying to get her care ever since,” said Mr Rahman.
“I consulted one of the paediatric cardiac specialists in Kerala, who suggested she had to go undergo surgery as soon as possible.
“They hoped the hole in her heart would close naturally, but that didn’t happen so it created lots of problems for her.
“She was losing weight and her health was deteriorating, so it was becoming more urgent by the day.”
Vital lifeline
Severity of developmental disability resulting from a congenital heart defect increases with the complexity of the defect.
More than 80 per cent of those with a mild CHD have no disabilities, while more than half with a more critical CHD have some form of impairment.
Mr Rahman and his wife, Mariyam Mumthas, who have two other daughters aged 13 and 9, sold family gold, other valuables and even some land to try to raise the Dh85,000 ($23,000) required to pay for the surgery.
“It was getting very difficult for us to afford this, so without the initiative this surgery probably would not have happened,” said Mr Rahman, who works in his local bakery.
“It has made a huge difference to all our lives, not just Fathima’s. We are so grateful.”
To support children in conflict zones across Africa, special travel permissions had to be obtained for the families involved. In India, the initiative collaborated with government departments to offer high-cost life-saving surgeries that were otherwise not covered under existing schemes.
Every year, more than a million children are born with congenital heart disease worldwide, but just a tiny percentage receive the treatment they need.
Another lucky child was Adam Hany, also from Kerala. The 2-month-old was born with a narrowed aorta – the major artery carrying blood from the heart to the rest of his tiny body.
The defect caused his heart to work harder, leading to high blood pressure and other potentially life threatening problems.
Through the programme, Adam had surgery this week and is now recovering. His parents are hopeful he can make a full recovery and live a full, normal life thanks to the surgery they would not otherwise have been able to afford.
“We were told when he was born Adam needed this surgery by the doctor, but with our financial issues it was not something we could pay for,” said Abdulla Nekarj, the child’s father.
“We waited for two months trying to find a way, and then applied for this fund after we were told by the hospital we may be suitable applicants.”
Transforming lives
Without the surgery, Adam faced serious development issues as his brain was unlikely to fully function, and even more healthcare costs in the future to manage his associated conditions.
The Golden Heart initiative has helped avoid that difficult path for the family.
“We are very happy this has been done,” said Mr Nekarj.
“Adam only has one kidney and some hearing loss, but at least we have been able to manage his heart issues. It is a big relief.”
Experts reviewed each medical record from the hundreds of applicants, and shortlisted candidates based on the severity of their condition and initiative guidelines.
Global experts in the field were then contacted to perform the surgeries and transport arrangements made for each of the families.
The process from application to surgery took just three months.
“It fills our hearts to see these children taking baby steps into their healthier lives through the Golden Heart Initiative,” said Dr Vayalil.
“When we launched this, it received a good response from all quarters – but executing the mission was no easy task.
“With utmost devotion, our doctors and staff worked towards the healing of these little ones.
“This would not have succeeded without their hard work and the families that trusted us.”
