Early evaluation for children with heart defects.
Each year in the United States, congenital heart defects--pres-ent at birth--affect approximately 36,000 infants, or nine out of every 1,000 infants. Medical advances help most infants born with a CHD survive into adulthood. Adult CHD survivors now number between 1 and 3 million. Survivors with complex heart problems, however, are at a greater risk for developmental issues compared to heart-healthy children, which may stem from the heart defect, an underlying genetic condition, medical treatments or the day-to-day psychological stress of living with an ongoing, serious disease.
Developmental concerns among children with congenital heart defects may start as early as infancy but often become more of a problem in middle childhood or adolescence. They can show up as delayed achievement of developmental milestones, school difficulties, poor social skills, speech and language problems, behavior and emotional issues, and physical limitations.
Some of the behavioral problems commonly seen in children with congenital heart defects include difficulties paying attention, hyperactivity, emotional outbursts, anxiety, depression, and difficulty with executive functioning (organizational skills and emotional regulation). These developmental disorders can be identified and managed through continuous surveillance, appropriate screening, early evaluation, periodic re-evaluation, and continuous, comprehensive treatment coordinated by a child's medical home or a developmental-behavioral pediatrician.
A developmental-behavioral pediatrician is a board-certified specialist who has expertise in diagnosing and managing developmental delays or disorders and behavioral conditions, such as ADHD. If the child has significant difficulties, he or she may benefit from a multidisciplinary treatment approach that includes special education classes, tutoring, behavior management counseling, and physical, occupational, and speech/language therapies.
Research has shown that certain conditions increase the risk for these developmental disorders among survivors, including open heart surgery in infancy, having a congenital heart defect that results in the child being chronically "blue," or a combination of congenital heart disease and one of the following issues: premature birth, developmental delay as a baby, suspected genetic abnormality or syndrome, history of mechanical support to help the heart, heart transplantation, a history of cardiopulmonary resuscitation, prolonged hospitalization during the child's heart care, seizures related to heart surgery, brain abnormalities noted on brain imaging, and a high level of concern about developmental delays by the medical home provider.
If a child fits the high-risk criteria, that child should go to the physician who coordinates his or her care to obtain evaluations for neurodevelopmental, psychosocial, and behavioral and emotional issues. The child's cardiologist should continue to handle the physical issues related to the heart disease, but other caregivers need to join the child's "medical home," to ensure the best ongoing, comprehensive care. A medical home is usually a child's primary care doctor who can coordinate care from multiple medical providers and therapists, providing families with an overall approach to managing their child's physical and emotional health needs.
In addition to assessing risk level and referring high-risk patients for further developmental and medical evaluation, other recommendations include:
* Establish a medical home, usually the primary care provider, to coordinate care between various specialists.
* Reassess a child's development each time he or she visits the medical home, since risk level may change over time.
* Refer for early intervention even before a developmental disorder is formally diagnosed if your child is considered at high risk.
* Re-evaluate for developmental disorders periodically for children with congenital heart disease deemed high-risk: periodic re-evaluation for developmental disorders is recommended throughout infancy and childhood at 12 to 24 months, 3 to 5 years, and 1112 years of age.
* Consider counseling for educational or vocational options when your child reaches young adulthood if your child is high-risk.
If potential developmental problems can be identified earlier, then the hope is to prevent issues from coming up in school that impede children with congenital heart disease from achieving their fullest potential. In the past, treatment goals for children with congenital heart disease were focused on survival. Now that survival has improved, the goal is for these children not just to survive but also to thrive.
Research supports the benefit of early evaluation and ongoing treatment of developmental issues. Cincinnati Children's Hospital and other academic medical centers have established multidisciplinary clinics to evaluate, diagnose, and monitor developmental, behavioral, and learning problems. Teams often include developmental-behavioral pediatricians, cardiovascular geneticists, occupational therapists, physical therapists, speech pathologists, psychologists, neurologists, educators, and cardiologists. If you or someone you know has a child with a congenital heart defect, talk to the child's cardiologist about resources in the community to monitor and support his or her development, learning and behavior.
By Karen Mason, MD, MHS, Julia Anixt, MD, and Bradley S. Marino, MD, MPP MSCE
Karen J. Mason, MD, MHS is an Assistant Professor in the Division of Developmental and Behavioral Pediatrics at the Cincinnati Children's Hospital Medical Center. Dr. Mason's professional work involves the evaluation and longterm management of children with complex developmental, behavioral and learning disorders. She is also involved in the medical training of pediatric residents and fellows in the Division of Developmental and Behavioral Pediatrics.
Julia Anixt, MD is a board certified developmental-behavioral pediatrician at Cincinnati Children's Hospital Medical Center (CCHMC). She completed her pediatric residency at Yale-New Haven Hospital, followed by a research fellowship in the Robert Wood Johnson Clinical Scholars Program at Johns Hopkins University and Developmental-Behavioral Pediatrics training at the University of Maryland. She provides care to patients in the CCHMC Heart Institute Neurodevelopmental Clinic and conducts clinical research on attention-deficit/hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) in children.
Bradley S. Marino, MD, MPP, MSCE is an associate professor of pediatrics at University of Cincinnati's College of Medicine and an attending cardiac intensivist in Cincinnati Children's Hospital Medical Center's Cardiac Intensive Care Unit. Dr. Marino also serves as the Director of the Heart Institute Research Core and Research Director of the Heart Institute Neurodevelopmental Clinic. His research interests are on the impact of neurodevelopmental, psychosocial, and physical morbidities on quality of life, functional status, and behavioral and emotional functioning in the high-risk complex congenital heart disease population. Dr. Marino earned his medical degree from Harvard Medical School and completed his pediatric residency at Johns Hopkins Hospital and a combined fellowship in Cardiology and Critical Care Medicine at The Children's Hospital of Philadelphia.
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|Author:||Mason, Karen; Anixt, Julia; Marino, Bradley S.|
|Publication:||Pediatrics for Parents|
|Date:||May 1, 2013|
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