NICVD: A lifesaver for children with congenital heart disease

Congenital heart disease (CHD), a heart defect or abnormality present in newborns, is a term that strikes fear in parents whose children are affected. Congenital heart disease is often associated with insurmountable medical expenses, emergencies, endless appointments, and persistent anxiety.

Pakistan has one of the highest global rates of CHD, disproportionately affecting the poor. Factors such as malnutrition, inadequate maternal health, and frequent pregnancies contribute to its prevalence. Dr Abdul Sattar Shaikh, the head of pediatric cardiology at National Institute of Cardiovascular Diseases (NICVD), warns that most children with CHD will not survive their first year if left untreated.

With roughly 60,000 new CHD cases annually in Pakistan, most patients previously had to seek treatment abroad, often in neighbouring countries like India. Public institutions in other provinces typically have waiting lists of 6-12 months for procedures. The Sindh Government assumed control of the NICVD program in 2015, after the passage of the 18th Amendment, with Dr. Nadeem Qamar becoming the executive director. Under the leadership of Pakistan People’s Party Chairman Bilawal Bhutto Zardari, the hospital’s pediatric department has undergone a revolutionary transformation. NICVD is now the sole comprehensive children’s heart center in Pakistan.

Over the past five years, around 600,000 children have been treated, an extraordinary number for any institution worldwide. The NICVD network conducts an average of 1,500 pediatric open-heart surgeries and 2,000 interventions and minimally invasive procedures each year, using cutting-edge technology. In contrast to other provincial children’s hospitals, NICVD treats critical patients within a week and moderately stable patients within one to two months. Remarkably, all these services are entirely free of charge, while private hospitals charge Rs1 million to Rs2 million per patient on average.

The institution serves the entire country, with over 50% of CHD cases coming from outside Sindh, including Balochistan, southern parts of Punjab, and Khyber Pakhtunkhwa. The NICVD pediatric department has also treated patients from Iran, Afghanistan, UAE and Oman.

Offering comprehensive pediatric cardiology services, the NICVD network provides everything from diagnosis to treatment. These services include 24/7 pediatric emergency services, open-heart surgeries, interventions, catheterization, and echo and fetal echo services. Full services are available in Karachi, Hyderabad, Tando Muhammad Khan, and Sukkur, while OPD, emergency, and echo services are offered in Mithi, Larkana, Nawabshah, Khairpur, Sehwan, and Lyari.

The NICVD network has implemented the CHD registry program, registering families with CHD history, and offering maternal screening, diagnosis, and counseling. This enables early detection of symptoms in pregnant mothers and encourages preventative measures. The network also educates and trains general practitioners and pediatricians across the province through seminars and lectures. Further, a 300-bed pediatric cardiology building is currently under construction and is expected to be operational within two years, significantly increasing patient capacity and reducing wait time.

The remarkable progress made by the NICVD network in recent years has provided hope and solace to countless families affected by congenital heart disease in Pakistan. By offering accessible, comprehensive, and free-of-cost treatment, NICVD has become a beacon of hope for children and their families, overcoming economic and geographical barriers. The ongoing expansion of facilities and the dedication to early detection, education, and prevention demonstrate NICVD’s unwavering commitment to improving the lives of those afflicted by CHD. As this vital institution continues to grow and evolve, it not only exemplifies the power of compassion and innovation in healthcare but also serves as an inspiration for other countries to address the needs of their most vulnerable citizens.

Zainulabedin Shah is a healthcare management professional.

Published in The Express Tribune, March 28^th, 2023.