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Heart Matters, a publication of the Heart Center at Children's Hospital of Wisconsin
  Volume 7 Issue 2 April 2004  
Blue Line


Inside this issue
Growth of the Cardiac Exercise Lab: New equipment and advanced testing options spur growth
Atherosclerosis prevention in children: The epidemic of pediatric overweight
Fetal Concerns Program
Annual parent education day held

Growth of the Cardiac Exercise Lab: New equipment and advanced testing options spur growth

Michael Danduran, MS, exercise physiologist, Herma Heart Center, Children's Hospital of Wisconsin.

The Cardiac Exercise Lab has seen exciting changes and tremendous growth over the past two years. Although the lab always has been a part of the Herma Heart Center, it had been underutilized until April 2002 when the lab increased testing options resulting in enhanced patient diagnosis and management. This new interest in the realm of exercise testing has lead to statewide use of the lab and its services.

In the past, the lab combined the services of electrocardiogram (including Holters and event monitors), tilt table testing and exercise evaluation. The lab volume was enormous, however, there was little specialization in any one area. The first significant change was to separate the available services in order to allow optimization of each. Electrocardiogram (ECG) – with nearly 4,000 ECGs, Holters and events annually – was moved to its own space. This allowed the exercise diagnostics and tilt table testing to proceed uninterrupted and experience growth. From 1995-1999 combined studies averaged 160 annually, and from 1999-2001 combined studies totaled 320 yearly. It was apparent that as volumes increased so did the need for new business strategies and improved testing.

In April 2002, I was hired to help transform the existing program into a more comprehensive exercise diagnostic program. New equipment has been purchased for the lab. A new breath-by-breath gas analysis system allows for the assessment of ventilatory parameters at rest and with exercise and serves as an adjunct to ECG, hemodynamics and pulse oximetry. Baseline lung assessment and ventilatory measurements such as exercise-related oxygen consumption, minute ventilation and carbon dioxide production help determine the extent of cardiac related physical and ventilatory limitations. These measurements are diagnostic in children with congenital heart disease even as young as 4 years old and allow us to monitor physical capacity over time.

Since 2002, lab utilization has increased dramatically well beyond projections set forth in the original business plan. After two years we have exceeded the projection for 2005. More than 1,000 stress and tilt tests have been performed since April 2002. Complete ventilatory measurements, including pre- and post exercise spirometry, have been performed in greater than 80 percent of all stress tests. Nearly 700 studies have been completed on children seen by Herma Heart Center cardiologists. Of those, nearly 200 studies have been performed in children after surgical repair of a congenial heart defect.

Preliminary analysis of our data concurs with current literature and cultivates future ideas. For example, despite the amount of data measuring physical capacity in children with Tetrology of Fallot, there is very little data measuring baseline pulmonary function studies nor predictive value of interventional stratagem. The use of static and dynamic ventilatory measures will aid in the long-term care of patients with congenital heart disease.

The success of the Herma Heart Center's surgical outcomes and high standards of patient care is creating tremendous research and education possibilities. The ability to quantify the surgical and medical treatment outcomes with physical capacity measurements has remarkable research potential and will lead to continued growth of the Cardiac Diagnostic Lab.

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Atherosclerosis prevention in children: The epidemic of pediatric overweight

Steven Sondike, MD, program director, NEW (Nutrition, Exercise and Weight Management) KidsTM Program at Children's Hospital of Wisconsin, assistant professor, Pediatrics (Gastroenterology), Medical College of Wisconsin.

Overweight slowly has become the nation's premier health crisis over the last couple of decades and now is close to overtaking tobacco-related disease as the leading killer among Americans. Direct and indirect costs of obesity-related disease have exceeded $117 billion. An estimated 62 percent of American adults currently are overweight or obese, and in our children the increase is even more ominous.

According to the National Health and Nutrition Examination Survey III (NHANES III) 22 to 23 percent of our nation's children are above the 85th percentile for body mass index (BMI), and 10.5 are above the 95th percentile when compared to the original NHANES data. This means that not only are our children getting heavier on average, but the heaviest children are getting even heavier. But weight is not the only issue for these children. The incidence of type 2 or "adult onset" diabetes in the pediatric population has increased tenfold in the last two decades. High blood pressure, orthopedic problems, fatty liver and high cholesterol are increasing at alarming rates. The previous generation of pediatricians did not need to know how to manage a type 2 diabetic in the emergency room and this generation still does not pay much attention to the management of an acute myocardial infarction. Will this always be the case?

The Bogalusa Heart Study
Until recently, the concept of screening for cardiovascular risk in children was not a well-established practice. This began to change with findings from the Bogalusa Heart Study. This study was a community-based study of cardiovascular disease risk factors early in life. The study was conducted in Bogalusa Louisiana: a middle class multiracial town (33 percent African-American) with a population of approximately 45,000. Conducted between 1973-1994, close to 27,000 exams were performed on children and young adults ages 5-24. One of the most interesting components of the Bogalusa Heart study was that the investigators studied the coronary arteries in children who died from non-cardiovascular causes. The results were seminal. First, they found that atherosclerosis begins at an earlier age then previously was thought. Coronary artery and aortic lesions were found as early as age 5. The second important finding was that the atherosclerotic lesions in childhood were associated with the traditional risk factors for adult atherosclerotic disease. The strongest associations were found with elevated BMI, elevated systolic blood pressure, elevated LDL cholesterol, elevated triglyceride and a family history of early cardiovascular disease. Lesser associations were found with decreased HDL cholesterol and increased diastolic blood pressure (Berenson, 1998). The implications are clear: the disease we see in adults begin in childhood, and we should start screening or even treating lipid diseases earlier than we have been accustomed.

Who should be screened?
Should every child be screened? When should we start? What should we test? Screening is defined as the search for an asymptomatic illness in a defined population. Often the establishment of a screening test is considered among the most seminal events in the history of medicine. No one doubts the screening for phenylketonuria, an inborn error of metabolism that is easily treated but fatal if missed, is a good idea. But sometimes the benefit is questionable, leading to more tests and procedures without a reduction in morbidity and mortality. The acceptable screening test depends on the characteristics of the disease, the test and the population screened. The disease should have a significant effect on the quality or quantity of life. It should have a prevalence high enough to justify costs. It should be readily treatable, and it should exist in an asymptomatic period where intervention would be useful. The test should be sufficiently sensitive and specific and should be acceptable for patients; a lumbar puncture would not make a good mass screening test no matter how accurate. The population should have a sufficiently high disease prevalence, be accessible to receive the screen and the treatment and be able to comply with subsequent diagnostic tests and necessary therapy.   

Screening for cholesterol in children remains somewhat controversial. Most children and adolescents are at low risk for cardiovascular events. The efficacy of interventions in childhood has not yet been shown to be effective with long-term mortality studies. It is difficult to initiate long-term health interventions in children and adolescents. There is concern about the psychological consequence of labeling a child as "diseased." There is the concern that restrictive diets will inhibit normal growth, and that emphasizing fat restriction in adolescents will foster the development of anorexia nervosa.

Recommendations of the expert panels
The National Cholesterol Education Panel (NCEP), in a statement adopted by the American Academy of Pediatrics (AAP), did not recommend mass random screening of the entire population for the reasons above. Instead, what was recommended was a policy of selective screening. The recommendations of the expert panel is summarized in the criteria below:
Based on family history:

  • Screen children or adolescents with Family Hx for early (Age < 55) CVD:
    • History of documented abnormal angiogram.
    • History of angioplasty or bypass surgery.
    • History of MI, stroke or angina pectoris.
  • Screen offspring of a parent with Chol. >240.
  • Screen children with unobtainable Family Hx.

Unrelated to family history also may want to screen those who:

  • Are overweight.
  • Consume an excessive amount of saturated fat.
  • Smoke excessively.

If the child was screened because the parent has high cholesterol, a random total cholesterol should be measured. If total cholesterol is greater than 200 mg/dl, then a fasting lipid profile should be measured. If the total cholesterol is between 170 and 200 mg/dl, the test should be repeated and the two results should be averaged. If the average is greater than 170, a fasting lipid profile should be obtained.  If the screening has occurred because of an early cardiac event in a first degree relative, then a fasting lipid profile should be obtained. Since there is no approved intervention before age 2, it is recommended that screening for cholesterol begin after this age.

Recommended interventions are based on the level of LDL cholesterol. If the LDL is less than 110 mg/dl, the only recommendation is to provide risk factor education and rescreen in five years. If the LDL is between 110 and 129, the ADA step I diet should be initiated (see below) and the child should be rescreened in one year. An LDL above 130 mg/dl requires a medical examination for secondary causes of hyperlipidemia (thyroid, liver, renal and others). All family members should have a lipid screen, the step I diet should be instituted, and the child should be rescreened in three months. If the LDL does not reduce, the step II diet should be undertaken. 

Step I Diet

  • Less than 30 percent but no less than 20 percent of total Kcal from fat.
  • Less than 10 percent of total Kcal from saturated fat.
  • Less than 10 percent of total Kcal from polyunsaturated fat.
  • No more than 300 mg/day cholesterol. 

Step II Diet

  • Detailed diet history and analysis.
  • Instruction by dietary specialist.
  • Less than 30 percent but not less than 20 percent of total Kcal from fat.
  • Less than 7 percent of total Kcal from saturated fat.
  • Less than 10 percent of total Kcal from polyunsaturated fat.
  • No more than 200 mg/day cholesterol.

Pharmacotherapy
Pharmacotherapy is recommended in pediatric and adolescent patients if the child:

  1. Is older than 10.
  2. Failed step I and step II intervention.
  3. Has LDL>190 or LDL>160 in the presence of positive FHx, or two or more other uncontrolled risk factors. Some statins have recommendations down to age 12; check the prescriber information. Bile acid resins, while high in unpleasant side effects which interfere with compliance, are effective and approved for all children. The long acting niacin preparations (Niaspan) are approved only for adults, but may be used in older teenagers and young adults that you may care for. Flushing is the major side effect and some find it untenable. Fish oils have been shown to reduce trigylcerides in some trials, but have blood-thinning capacity, so should not be used in the presence of bleeding disorders.

The NEW Kids ProgramTM 
The NEW Kids ProgramTM at Children's Hospital of Wisconsin is well equipped to manage hyperlipidemia associated with overweight. The program is a multidisciplinary program consisting of medical management, nutritional management instituted by a registered dietitian and psychological treatment provided by a clinical health psychologist. NEW Kids also is associated with physical therapy and rehabilitation medicine, endocrinology, cardiology, surgery and other Children's Hospital programs. The program offers a holistic approach to the management of nutritional disorders in children and works within the context of the child and family to effect needed changes. The program requires a physician referral. To refer a patient, download the referral packet or call (414) 266-6864.

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Fetal Concerns Program

Emilie Lamberg Jones, RN, BSW, Fetal Concerns Program

Each year 150,000 babies, or about one in 28, is diagnosed with some type of birth defect. Of these, heart defects are the most common. To help educate, counsel and empower families as well as coordinate their care, the Fetal Concerns Program was developed cooperatively by Froedtert Hospital, the Medical College of Wisconsin and Children's Hospital of Wisconsin. Co-directors leading the program are Thomas R. Wigton, MD, perinatologist at Froedtert and associate professor of Obstetrics and Gynecology at the Medical College, and Steven R. Leuthner, MD, neonatologist at Children's Hospital and associate professor of Pediatrics and Bioethics at the Medical College. It is the only program of its kind in Wisconsin.

Since its inception in September 2000, the Fetal Concerns Program has helped more than 600 families from Wisconsin, northern Illinois, Alabama, Kansas, New Mexico, Colorado and Michigan whose babies were diagnosed with a birth defect in utero.

Coordination of care begins at the time of prenatal diagnosis and continues through at least one year after delivery. The Fetal Concerns Program nursing team includes Barbara Burkard, RN, Emilie Lamberg Jones, RN, BSW, and Teresa Godfrey, RN, MSN. The nurses work as advocates for the families and coordinators of the specialty appointments the baby will need after birth.

Some of the specialties a family may work with include:

  • Cardiology.
  • Cardiothoracic surgery.
  • Cleft lip and palate.
  • General surgery.
  • Genetics.
  • Nephrology.
  • Neurology.
  • Neurosurgery.
  • Orthopedic surgery.
  • Urology.

Other areas often involved are:

  • Child Life.
  • Jane B. Pettit Pain and Palliative Care Program.
  • Pastoral Care.
  • Poison Center.
  • Social Work.

In addition to health care questions about their baby, families often have many other questions including: Where will we stay while our baby is in the hospital? How do I explain this to my 5-year-old? Where do we wash our laundry? Will I still be able to breast-feed? The nurse coordinators serve as the main point person to answer families' questions and help them figure out how their lives will function through the whole process.

Before the baby's birth, the nurse coordinators arrange consultations with specialists and tours through applicable areas of the hospital. These may include the Froedtert and Medical College Birth Center or the intensive care units at Children's Hospital. This allows parents to begin feeling comfortable, become an informed participants in the plan of care and empowered in the decision making process. This information helps parents begin to grieve the loss of a "normal" pregnancy and helps decrease their anxiety. Nurse coordinators attend appointments, visits to the Birth Center and Children's Hospital and call parents at home. Nurse coordinators also continue contact with families after a pregnancy loss or if their baby dies after birth.

Referrals can be from a perinatologist, cardiologist, family physician, nurse midwife or the parents themselves. Insurance companies are billed for the consultations with the physicians, but there are no other charges for the service. The goal is to provide families as much information and support as possible.

In the fall of 2003, Children's Hospital began a cooperative affiliation with Evanston Northwestern Healthcare, Maternal-Fetal Medicine Group to expand care into northern Illinois. The expansion of services included the appointment of Scott McGregor, MD, medical director, and Godfrey as nurse clinician. To refer a patient or for more information about the program in this area, call (847) 662-4380, ext. 6248.

To reach the Fetal Concerns Program in Milwaukee, call (414) 805-4776.

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Annual parent education day held

Carol Carson, RN, nurse clinician, Herma Heart Center, Children's Hospital of Wisconsin.

The David A. Lewis Parent Education Day for the Herma Heart Center was held on Saturday, Feb. 7, 2004, at the Medical College of Wisconsin. This yearly program is designed to help educate parents, grandparents and other family members about their child with congenital heart disease. Families from all over Wisconsin, Illinois and the Upper Peninsula of Michigan attended the daylong event.

The conference is named in memory of our colleague, David Lewis, MD, who passed away in September 2001 while on a medical mission to Ecuador. Dr. Lewis' life was dedicated to helping these children.
Attendance has grown steadily over the eight years this conference has been offered. This year we had 150 family members in attendance. Keynote speakers were S. Bert Litwin, MD, director emeritus, Cardiothoracic Surgery, Children's Hospital of Wisconsin, clinical professor, Surgery (Cardiothoracic), Medical College of Wisconsin; Peter Frommelt, MD, pediatric cardiologist, Children's Hospital, associate professor, Pediatrics (Cardiology), Medical College; Kathy Mussatto, RN, BSN, manager of research at the Herma Heart Center, Children's Hospital; and Kathy Hanson-Morris, RN, BSN, MS, coordinator, Wisconsin Pediatric Cardiac Registry.

Parents chose from four morning and afternoon breakout sessions. Topics included:

"Fitness preparation: What your child can do" – Mike Danduran, MS, exercise physiologist, Children's Hospital.

"Failure is not an option: Evolving concepts in pediatric heart failure" – Steven Zangwill, MD, pediatric cardiologist, Children's Hospital, assistant professor, Pediatrics (Cardiology), Medical College.

"Critical to our children's success: Life in the intensive care unit (ICU)" – Nancy Ghanayem, MD, pediatric critical care specialist, Children's Hospital, assistant professor, Pediatrics (Cardiology), Medical College.

"Open forum on congenital heart disease" – Sandy Bugalski, MSW, cardiology social worker, Children's Hospital; and Jane Sowinski, RN, BSN, cardiology nurse clinician, Children's Hospital.

"When your child needs a new heart" – Jane Zlotocha, RN, PNP, heart transplant coordinator, Children's Hospital; and Steven Zangwill, MD, pediatric cardiologist, Children's Hospital, assistant professor, Pediatrics (Cardiology) Medical College.

"And the beat goes on" – Anwer Dhala, MD, electrophysiologist, Children's Hospital, associate professor, Pediatrics (Cardiology), Medical College; Paula Larson Braam, RN, Medtronic USA.

"Finding your way through the medical insurance jungle" – Mark Rakowski, director, Managed Care/Health Care Reform, Children's Hospital; and Jay Wittchow, manager, Patient Accounts/Family Financial Services, Children's Hospital.

"Heart-wise" – Raymond Fedderly, MD, pediatric cardiologist, Children's Hospital, assistant professor, Pediatrics (Cardiology), Medical College.

A panel discussion "Who's in Charge Here? When Your Child Rules the Roost" completed the program. Panel members included Mike Gutzeit, MD, Children's Medical Group pediatrician and president of the Medical/Dental Staff at Children's Hospital; Maryanne Kessel, RN, Herma Heart Center program administrator; Lois Pearson, child life specialist; Cheryl Brosig, PhD, psychologist; and Roger Barrington, teacher.  

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