Pediatric Congenital Cardiac Surgery in New York State, 1997-1999
INTRODUCTION
This booklet is intended for health care providers and families of children who have a congenital heart defect. It provides information on risk factors associated with pediatric congenital heart surgery and lists hospital specifc mortality rates that have been risk-adjusted to account for differences in patient severity of illness. New York State has taken a leadership role in setting standards for cardiac services, monitoring outcomes, and sharing performance data with patients, hospitals, and physicians. Hospitals and doctors involved in the care of pediatric cardiac patients have worked in cooperation with the Department of Health and the Cardiac Advisory Committee to compile accurate and meaningful data for use in enhancing quality of care. The data in this report are based on the New York State Pediatric Cardiac Surgery Reporting System. This system is used to gather information on each patient's diagnosis, the actual procedure performed and other clinical factors that may impact outcomes. As part of the reporting system, hospitals have the ability to track their own data and compare their experience to statewide outcomes. We believe that this process has been instrumental in achieving the excellent outcomes that are experienced in centers across New York State.
Congenital Heart Defects
Congenital heart defects are a leading cause of death in infancy. Congenital heart defects may take many forms and represent a wide range of risk. Some simple defects, such as a small opening between heart chambers, may be consistent with good health and a normal life span. Other defects, such as an under developed heart chamber or valve may result in shock in the frst hours or days of life unless rapid and effective action is taken. Findings of an unusual heart murmur, cyanosis (blueness), or fast breathing indicate the need for consultation by a pediatric cardiologist (child heart specialist) . In some cases, only a physical examination by a pediatric cardiologist is required. If a signifcant heart problem is suspected, an echocardiogram (ultrasound of the heart) is obtained. If further information is required, a heart catheterization is performed in which a small catheter or tube is inserted into a blood vessel and threaded into heart chambers and large blood vessels to measure oxygen levels. A special dye may be injected through the catheter making it possible to take internal pictures of certain parts of the heart or major vessels. For some heart defects, special devices may be inserted into the heart through a catheter to open narrowed valves or vessels, or to close simple holes within the heart.
If the patient requires surgery to correct the defect, a decision regarding the timing and type of surgery is made jointly between the cardiovascular surgeon and the pediatric cardiologist. During and after surgery, the cardiovascular surgeon leads a team consisting of anesthesiologists, perfusionists, post-operative care specialists, nurses and other relevant care providers to coordinate the needs of the patient and family. Following discharge, the patient is followed jointly by the surgeon, pediatric cardiologist, and primary care provider. Some complex heart defects require a series of operations to allow for growth or to compensate for a signifcant malformation. Careful joint planning by the entire team of providers is needed for these patients.
Some simple heart defects can be considered " cured " by surgery. . For other patients, good health is restored, but lifelong monitoring to prevent or treat secondary problems is required. Because of the extreme variability of congenital heart defects, the timing and type of surgery can vary from patient to patient. The surgical plan may also vary from one surgical center to another when there is no clear advantage of a single approach. When experience has shown one surgical approach superior to another, it is adopted by all centers. Some patients who are at very high risk for surgery are referred to a specifc center where a special technique, that is not performed elsewhere, can be performed. For this reason, it is not possible to determine the level of expertise of a program by looking at the simple mortality rate. It is necessary to compare one center's experience with the results of others performing operations of equal complexity.
In examining the results of a single surgical center, it is important to remember that many factors other than the techniques of surgery are responsible for the fnal outcome. To fairly compare the outcomes of different surgical programs, it is necessary to recognize the extensive patient variability. Patient demographics, diagnoses, recommended procedures and health conditions all must be taken into account. When heart surgery is recommended for your child, it is important to speak with your pediatric cardiologist and cardiac surgeon. They will be able to explain the special features of your child's defect and the surgical experience of a particular center. A listing of the wide range of pediatric congenital heart disease diagnoses associated with pediatric cardiac surgery is provided in Appendix 1.
