Countries with the highest fertility rates tend to have the lowest incomes per capita, thus accentuating the disparity. Countries with high fertility rates have more children with congenital heart disease (CHD) per wage earner.
Paediatric heart disease is a term used to describe several different heart conditions in children. The most common type of paediatric heart disease is congenital (CHD), meaning that children are born with it. While most people associate heart problems with the elderly, congenital heart defects are the most common form of birth defects and are among the top five causes of death for children under five worldwide. According to estimates, Pakistan will become the fifth most populous country in 2050 at its current rate of population growth (Government of Pakistan, 2013). Pakistan, nor any of its provinces, are immune from the burden of CHD.
In Pakistan, more 60,000 babies are born each year with this condition, sometimes referred to as a hole in the heart. Early congenital heart disease has very subtle symptoms, such as irregular breathing patterns, or immature growth. Children with these conditions might appear smaller than others their age and not as strong. More importantly, many parents are not equipped with enough knowledge to recognize these signs. Sadly, over 60 percent of the children with CHD are unable to make it past their first few years due to poor diagnosis and lack of tertiary health care institutions. When children with CHD receive timely treatment, including newborns whose hearts are the size of a strawberry, 85 percent can survive into adulthood to live healthy, productive lives.
Even though we have one of the highest rates of CHD in the world, there are only four hospitals in Pakistan that are able to perform surgeries on these young patients, recognizing that the quality of care is not the same at all hospitals that provide pediatric cardiac surgery. There are many reasons why one hospital might be better than another at operating on tiny hearts, but a major one reason includes: practice. Simply put, when a surgical team gets more practice fixing complicated heart defects, the team gets better at it.And it is not just practice in the operating room. While the number of qualified paediatric cardiologists and surgeons are too small to cater to the needs of all Pakistani patients, the quality of experienced nurses who save children’s lives by picking up on subtle changes after the surgery, changes they have learned to notice through years of experience, is an important consideration.
As Pakistan’s economy continues to grow, so does inequality in the most fundamental aspects of our lives, as quality healthcare remains inaccessible to most. Health priorities in Pakistan, by global and local stakeholders, have remained focused on controlling infectious diseases — diarrhoeal illness, rheumatic fever, measles, rotaviral infection, tuberculosis, malaria and polio. New and reemerging infectious diseases continue to pose a rising global health threat. Infectious diseases are a leading cause of death, accounting for a quarter to a third of all deaths worldwide. Although it is critical to target these infectious diseases in a lower-middle income country like Pakistan, improving local health services and controlling infectious diseases are mere band-aids compared to improving education, empowering women and reducing birth rates. It is also time to begin strategizing for non-communicable diseases including CHD.
Pakistan has one of the highest infant mortalities in the world at 66 per 1,000 births, yet there is no children’s hospital that covers all paediatric subspecialties, and the existing maternal and child health facilities are poorly funded. At the same time, poverty is the greatest barrier to successful treatment of congenital heart disease. The high mortality and morbidity, specifically from CHD, is also related to poor health strategy and inadequate paediatric cardiology facilities in the country. Most patients are not diagnosed until they are older, making CHD more complicated to treat. The average cost of treatment for CHD in Pakistan can range from Rs 350,000 to more than Rs 500,000, consequently only a minority are able to access these services, and even middle income groups are unable to afford treatment. Along with the high cost of treatment, our hospitals do not have the skills required to diagnose and treat patients with CHD.
Paediatric cardiac surgery and paediatric cardiac care require mastery of multiple critical, volume-related skills. Besides having the ability to perform technically difficult operations, we need to heed the call for the needs of children with heart disease to be included in efforts to strengthen health systems within Pakistan. Specifically, priorities must be made to build a paediatric cardiac workforce, coordinate amongst hospitals to refer patients to the appropriate facilities when surgery and treatment in needed,collect data on CHD in national health surveys and cause of child death statistics, as well as finance health coverage in a way that protects families from impoverishment when they seek care.
Pakistan needs to commit to changing this. But to do so will take more than just innovative thinking. We need a decicated strategy devoted to achieving sustainable improvements in access to essential care. To begin with, Pakistan needs to increase its health expenditure and the government needs to formulate a better strategy on healthcare; however, private hospitals and stakeholders must also begin taking action.
Since the turn of the millennium, child deaths have been cut in half thanks to improved public health and poverty reduction efforts. It is predicted that the number will halve again by 2030. That is the year that the UN Sustainable Development Goals call for the world to end preventable child deaths. This target will not be met without addressing congenital heart disease. Until then, a large underserved population of children with congenital heart disease is growing in Pakistan. It is time to re-examine how we deliver care to these vulnerable children. Policy makers should want to send your kid for heart surgery — should she or he require it — where they would prefer sending their own child: to a center of excellence.
The writer is a paediatric cardiologist, associate professor of paediatrics and child health at the Aga Khan University and service line chief of the Children’s Hospital at the Aga Khan University Hospital