Congenital heart disease (CHD) remains the most common birth defect affecting 1 in 100 newborn babies. According to the American Heart Association 1 (AHA), more than 2 million Americans have a congenital heart defect. Times have changed from when we put the baby into an ice bucket to initiate "deep hypothermia." Technologies have advanced, diagnostics are improved, management strategies have been perfected, and the future of genetics looks promising. This issue of Critical Care Nursing Quarterly (CCNQ 25:3) is dedicated to subjects involved with diagnosing, intervening, and managing infants and children with congenital heart disease. It is with pleasure that I have asked Mary Beth Bova, RN, MS, CNA, Director of Cardiac Services, and Robert M. Campbell, MD, Director of Sibley Heart Center, to join me in writing the foreword to this issue.
HIGH TECH-HIGH TOUCH-HIGH REWARD
Most critical care nurses practice in the adult arena. As a clinician and administrator in the cardiovascular intensive care unit (CVICU) for 25 years, I was used to the "cookbook" medicine of coronary artery bypass graft (CABG) surgeries and valve replacements. When I transitioned my practice to pediatrics, it opened up an exciting world I knew very little about. There is no cookbook medicine here. CHD affects 1 out of every 100 newborns and is the leading cause of death from birth defects in infancy. 1 The effect of CHD is different in every child. Many of our patients are only hours old. Statistically, 50% of the patients in the CVICU are under 1 year of age.
In the following pages, you will read about technology, diagnostics, procedures, and research. You will, however, miss the essence of pediatrics. To this end, I would like to ask you some questions: When is the last time you heard a kazoo at work? Saw a clown? Patted a dog? How many fish tanks do you have at your place of employment? Are they at ground level? Do they have reinforced glass, allowing the weight of curious hands and heads? Do your carpets have stars and comets as the main pattern? Do you have to remember if you parked on the sun level or the snowflake level in the garage? How many red wagons do you have? Do you have an infant massage program? How often do your patients come back to visit? Is it weekly? Does your bulletin board have patient milestones-birthdays, entrances into first grade, graduations, awards, and celebrations-listed?
As you read about the high-tech care, every bit as complicated and complex as in the adult world, remember the other side of pediatric critical care. You may just find yourself humming a few lullabies.
Over the past several decades, so much has changed in the world of pediatric cardiac care. We now function in such a high-tech world, with the advent of arterial switch repairs for transposition, Ross repair for aortic valve lesions, Norwood repair for complex lesions including hypoplastic left heart syndrome, and transplants as an almost routine treatment for end-stage cardiac problems. Many cardiac lesions can now be treated effectively in the catheterization laboratory, and improved noninvasive diagnostic testing allows adequate patient assessment without the need for cardiac catheterization for many patients. Patient survival is greater than ever before.
However, we also live in a high-touch world. It is important that we always remember that we are not taking care of hearts, but rather of parents and patients with heart problems. Ethical issues arise daily. Internet Web sites and support groups permit sharing of information and feelings among families. Hospice has emerged as a treatment option, rather than an endpoint of treatment "failure." Further developments are just over the horizon. Soon we will have a more complete understanding about postoperative functional outcomes helping to better define physical, emotional, and educational potential. The field of developmental genetics for congenital heart defects is rapidly growing and soon will provide information about the impact of certain subtle chromosomal defects (eg, chromosome 22q deletion syndrome) on patient outcome. New technology and data will continue to advance our field, always based around the constant foundation of patient and family care and compassion.
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