“Each day is more difficult than the one before”


“Each day is more difficult than the one before”
Increasing urgency

Anxious parents of baby with heart ailment await Indian visa

By Zoya Anwer

By Zoya Anwer

The Paediatrics Cardiology department at the All India Institute of Medical Science gave ailing one-year-old Muhammad Ayaan Asad Khan in Pakistan an appointment for March 23, 2018 but his agonized parents Asad Ikram and Hadia Izhar who sent in their Indian visa applications on March 1, 2018, are still waiting.

Ayaan’s deteriorating condition makes them increasingly frantic. Ikram, a sales and marketing executive with a trade company, said he has visited the Indian High Commission in Islamabad three times with the necessary documents, twice taking little Ayaan with him.

“His growth has halted since the past three months. We are desperate to take him for the surgery,” he told The News over the phone from his home in Rawalpindi, stressing the urgency of the situation. “He turns blue because of lack of oxygen in his body.”

Ayaan, who celebrated his first birthday in February, still weights just 8.2 kg, which is on the lower side for his age. “He is very cranky at night because of sleeplessness, but we are far more worried about the fact that he doesn’t walk or crawl. He started to stand on his feet with balance but hasn’t even been doing that for the past few days,” says Hadia.

An only child, Ayaan was six months old when his primary care doctor Dr Zaheer Ahmed told the parents that his congenital heart ailment requires urgent surgery.

The condition is Tetralogy of Fallot (TOF), which means there are four hindrances to the flow of blood to his heart: a hole between the heart’s ventricles, the thickening of a muscle surrounding the lower right chamber, blood from both ventricles entering a displaced aorta (the largest artery) and an obstruction in the flow of blood between the heart and lungs.

The appointment they couldn’t keep

The appointment they couldn’t keep

In Pakistan, children with such ailments are usually treated after they are at least a year old.

Ikram and Hadia also consulted paediatric cardiologists at the National Institute of CardoVascular Diseases (NICVD) and Aga Khan University Hospital (AKUH), who seconded Dr Ahmed’s advice for surgery at the earliest. They suggested hospitals in India that could more efficiently handle the case.

Ayaan’s mother, a clinical pharmacist who previously worked at Shifa International Hospital, Islamabad, reached out to a cousin in New Delhi, who obtained the doctor’s appointment.

Ayaan: cranky and sleepless

Ayaan: cranky and sleepless

Post-op issues

Meanwhile, with the child’s condition worsening, on March 10, they brought him to Karachi, hoping to find a doctor to perform the life-saving surgery. But all the doctors they consulted said the same thing: even though the surgery is possible in Pakistan, the post-operative care is not adequate – a catch 22 as the parents want the surgery and their child to survive after it too.

“We were running around different hospitals for checkups, including AKUH, Liaquat National Hospital, Tabba and NICVD,” said Ikram, listing the medical facilities his family went to in Karachi.

They also went to Lahore on March 17 to examine options there but found the same story. The operation would be risky because of inadequate post-care.

Anxious appeal

On 8 March, Aman Ki Asha and Times of India published the story of another toddler in Pakistan with the same heart ailment who needs heart surgery in India. Little Maier Jawwad’s parents in Karachi had applied for the Indian visa in early December.

After months of waiting, on 13 March, the Indian High Commission in Islamabad phoned to let them know that the visa would be granted. The family will go to India on 28 March, on a restricted visa specific to NOIDA where the surgery is taking place.

Observers have little doubt that it was the media attention that enabled this little victory.

Ayaan’s primary care doctor’s referral

Ayaan’s primary care doctor’s referral

Encouraged by this case, Ayaan’s parents reached out to this correspondent through social media, hoping that highlighting their case will expedite their visas too.

“I’m a mother so hope you understand my painful feelings,” says Hadia. “I am strong but after all, I’m a mother”.

With her new Twitter account, she is trying to draw attention to the case (@HadiaAsad). Her cousin in New Delhi has also tried to reach out to two of Sushma Swaraj’s secretaries – Satish Chander Gupta and Vijay P. Dwivdei – who assured him that the visa would be granted. But Ayaan’s anxious parents are still waiting.

“We request the Indian High Commission, especially Sushma Swaraj, India’s Minister of External Affairs, to look into our child’s case because he needs to be treated urgently,” Ikram said. “Each day is more difficult than the one before.”

Heart2Heart

It used to take 15 days for an Indian medical visa to be processed, but now there is total uncertainty, says Faiz Kidwai, who coordinated the Heart To Heart initiative of the Rotary Humanitarian Trust in collaboration with Aman Ki Asha, 2012-2015.

The initiative helped families like Ayaan’s and Maier’s with travel and visa arrangements as well as free-of-charge surgery to those from low-income groups.

Some 70,000 children are estimated to be born with congenital heart disease in Pakistan every year, said Kidwai, adding that Heart To Heart helped some 500 such children.

“Due to political conditions, the programme slowed down. Meanwhile Rotary also worked with NICVD at Karachi and supported them to undertake surgeries in Pakistan,” he said.

While doctors in Pakistan do successfully conduct paediatric heart surgeries, it will be a while before the eco-system around such surgeries is developed to provide the necessary post-operation care for babies with complicated heart ailments like Ayaan and Maier. In this scenario, observers say that not providing medical visas in a timely manner can lead to tragic consequences especially for little patients.




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