1979 was the beginning of “opening up and reform” in China, marking a move away from the old socialist system and ushering in market based economic reforms. Since then, China has experienced breakneck economic growth, lifting many out of poverty. However, public health programs that flourished under the socialist system deteriorated after the economic reforms were instituted, and many Chinese citizens found themselves without access to basic medical services. In the countryside, the system completely fell apart. In recent years, the government implemented a rural health care system, but the initiative is limited in its coverage and has been slow to reach many of the communities in which we work.
Fortunately, the central government has, in the past 15 years, recognized its former neglect of the impoverished western rural areas of China and has once again instituted reforms like an inexpensive rural health insurance system that, though woefully inadequate, is still better than the nothing that preceded it. Aside from needed recent governmental reforms in health care, many foundations and not for profits, some secular, some faith based, some national Chinese and some foreign, have begun to work in poor areas to assist those most in need and without other recourse. China Cal is proud to have joined the others in this effort.
General Clinical Care
The regions of Yunnan in which the China California Heart Watch operates are some of the poorest in China and the world. Often, when one of our teams enters a rural village, it represents the first time in several years that any kind of fully-trained medical professional has visited. Because of the pressing need and our limited resources, China Cal has recently turned toward screening, diagnosis and treatment of pediatric heart disease and especially neonatal heart disease.
Critical Congenital Heart Disease(CCHD) is defined as disease that causes death or needs invasive intervention in the neonatal period, and neonates with this disease benefit most from early detection. About one to two per 1000 newborn babies have critical congenital heart disease. In developed nations, this problem is addressed using careful neonatal screening with pulse oximetry and stethoscope. This simple and accurate combined approach should be used in maternity hospitals throughout China to screen for congenital heart disease.
We estimate that more than 800 babies die each year in Yunnan Province because there is no program to screen for neonatal congenital heart disease such as that which is in place in developed nations. Thousands of others are crippled for life because non critical heart disease is not diagnosed sufficiently early.
Some experts feel Yunnan Province and similar developing areas of China are not economically, medically or technologically prepared to meet the chalenge of expensive and difficult treatments for newborns with congenital heart diseae and that it is better to let these children die. We disagree with this negative and we believe, backward concept. To support our argument, we point to the history of such care for newborns in the United States and to the rapidly advancing economic, medical and techological changes in China.
Surgery for a major type of CCHD, transposition of the great arteries (TGA), was not successfully achieved until 1975 in the United States. The first successful use of the Norwood operation for another common type of CCHD, hypoplastic left heart syndrome, was reported by Dr. William Norwood, Jr. and colleagues in 1981. Until 30 years ago, almost all neonates with CCHD in the United States had no hope for cure and died in infancy. After these first successful operations, hundreds of children have been cured and have survived into adulthood. Presently, the long-term survival of TGA is approximately 90% at 15 years of age and it is about 68% at five years for the hypoplastic left heart syndrome.
As was true in the United States 30 years ago, almost all children with CCHD in Yunnan today die in infancy. However, China is one of the fastest developing countries in the world, with economy and technology rapidly approaching western levels. We specifically see three relevant and important areas of development in Yunnan:
- Technical Skill and Knowledge. Until 2014, only one Yunnan hospital in performed neonatal heart surgeries. However, the number of hospitals with this service will increase to three within the next two years. Cardiac surgeons at Kunming Medical University, First Affiliate Hospital (KMU) are undergoing intensive training with the help of not for profit agencies like the Children’s Heart Link of Minneapolis, Minnesota and the China California Heart Watch. This year, 2015, two KMU surgeons will study neonatal surgery at Hong Kong Queen Mary’s hospital. In addition, Beijing Fu Wai Hospital, China’s best cardiac surgery hospital, will open a branch hospital with advanced cardiac surgery capacities in Kunming City this year.
- Organizational Structure. In Yunnan, as in the rest of China, there is a government sponsored effort to increase the percentage of births occurring in larger, better equipped county hospitals where state of the art echo-cardiographic equipment is available and where medical and nursing staff are better equipped to diagnose and stabilize newborns with CCHD before referring them to a large medical center in Kunming or elsewhere.
- Economic Support. Rural medical health insurance is improving every year since 2002 with the initiation and development of the New Cooperative Medical Health System. Five years ago, catastrophic major medical insurance was added to cover many cases of congenital heart disease and even complex CCHD cases are offered 30% coverage. Economic capacity of rural families to pay for surgeries is also increasing as are sources from charitable foundations. The China California Heart Watch, working with large foundations, like Ai You and Shen Hua and Hong Kong Childrens Heart Foundation, has supported over 400 surgical treatment for children with congenital heart disease during the past 5 years. China Cal screens local school children, does ultrsound diagnosis, refers to surgeons and networks with foundation in order to provide economic support for these children. China Cal has never found one case that could not undergo surgery because of lack of financial support.
The costs to treat CCHD are higher than for other types of congenital heart disease. The average financial burden for each family will be about $12,000. For the 28 million rural residents of Yunnan Province, mean annual income is about 1,000 $, (National Bureau of Statistics). Medical insurance can be expected to cover one third, charitable support one third to one half and the remainder will be supported by the family.
Our plan is to train county hospital doctors to properly screen and diagnose CCHD in neonates immediately after birth and to then refer these infants to large medical centers for definitive treatment. Screening will be done with stethoscopes and pulse oximeters which equipment will be made available to all county hospital doctors in our training program. Neonates with abnormal heart sounds or blood oxygen concentration will be referred for cardiac ultrasound in the county hospital. These will be referred to a major medical center with neonatal surgery capability. Intially, most neonates will be referred to West China Hospital in Chengdu (one hour by air from Kunming) and this will continue until the Kunming hospital technical level is sufficient to handle complex neonatal heart disease.
Pediatric Heart Care and Screenings
In the United States and other Western countries, virtually all newborns are screened for congenital heart defects at birth and during their first year of life. Infants who are found to have a congenital heart defect will then undergo surgery, allowing the child to lead a normal, healthy life. Unfortunately, in many areas of rural China, the capacity to screen all newborns for congenital heart disease is lacking, and treatment for those who are detected is frequently unavailable. If left untreated, children suffering from congenital heart defects are likely to die before they reach adulthood. With the support of our donors, the China California Heart Watch has screened thousands of children living in rural villages in Yunnan. Our screening missions give children who were previously undiagnosed the opportunity to undergo curative treatment and to enjoy a healthy life.
The families of rural children with heart disease are very poor. Incomes range from a few hundred to a few thousand dollars per year. Once we find a child with a treatable heart defect, we discuss the diagnosis with their family and offer the opportunity to apply for financial assistance either from our own funds, from government plans, or from private foundations and other charities with which we work. In no circumstance where we have discovered a treatable heart defect has the child not received appropriate surgical intervention because of a lack of funds.
30 years ago, high blood pressure was rare in rural China, and the prevalence of strokes and heart attacks was much lower than it is in the West. However, under China’s rapid urbanization, the prevalence of high blood pressure and heart disease have quickly risen. Today, heart disease is the leading cause of death in China. While the majority of China’s economic growth has occurred in the country’s urban centers, the countryside has been relatively neglected. Many of the risk factors for hypertension and cardiovascular disease, such as smoking and a high sodium diet, are just as common in rural areas as they are in urban areas. The China California Heart Watch works to document this growing epidemic by bringing international teams of researchers to conduct hypertension and cardiovascular disease surveys in Yunnan. Below is our list of publications to date in the international medical and public health literature.
Training Village Doctors
The training and continued education of village doctors is a core part of the China California Heart Watch’s mission in Yunnan. Half of China’s population–a group approximately twice the size of the population of the United States–still lives in rural villages. Though the number of village doctors working in rural Yunnan is stable, they remain poorly trained in the care of chronic diseases like hypertension and heart disease. In addition, many are also unaware of how to screen children for congenital heart defects. The China California Heart Watch hosts semi-annual training seminars for village doctors to improve their ability to manage chronic conditions such as hypertension and to hone their pediatric examination skills. After attending one of our training programs, the village doctors return to their villages better equipped to serve their communities.