Children with heart defects need early evaluation for related disorders
July 31, 2012
Children born with a congenital heart defect should receive early evaluation, prompt treatment and ongoing follow-up for related developmental disorders affecting brain function, according to a new American Heart Association scientific statement published in Circulation.
Each year in the United States, congenital heart defects - present at birth - affect approximately 36,000 infants, or nine out of every 1,000. Adult survivors now number between 1 and 3 million.
Medical advances help most infants born with a congenital heart defect survive into adulthood. However, survivors with complex heart problems are at a greater risk for developmental issues compared to heart-healthy children, which may stem from the heart defect, an underlying genetic variation, medical treatments or the day-to-day psychological stress of living with an ongoing, serious disease.
"If your child fits the high-risk criteria, go to the physician who coordinates your child's care to obtain evaluations for neurodevelopmental, psychosocial, and behavioral and emotional issues," said Bradley S. Marino, M.D., M.P.P, M.S.C.E., co-chair for the scientific statement's writing group and associate professor of pediatrics at the University of Cincinnati College of Medicine.
"Your child's cardiologist should continue to handle the physical issues related to your child's heart disease, but other caregivers need to join your child's 'medical home' to ensure the best ongoing, comprehensive care," said Marino who is also director of the Heart Institute Research Core and the Heart Institute Neurodevelopmental Clinic at Cincinnati Children's Hospital Medical Center. A medical home is usually the child's primary care provider.
Developmental disorders among children with congenital heart defects may manifest in childhood or adolescence as school difficulties, poor social skills, speech and language problems, attention, behavior and emotional issues and physical limitations. 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 central care provider. Treatment may include special education classes, tutoring, psychological, physical, and occupational and speech therapies.
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.
- Each time your child visit's their "medical home," their risk of developmental disorders should be reassessed because risk level may change over time.
- If your child is considered at high-risk, they may be referred for early intervention even before a developmental disorder is formally diagnosed.
- 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 11-12 years of age.
- If your child is high-risk, they may benefit from higher-education or vocational counseling when they are a young adult.
The statement identifies, for the first time, conditions that 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; and brain abnormalities noted on brain imaging.
"If we identify developmental problems earlier, we're going to help prevent issues from coming up in school that prevent these children from achieving their fullest potential," Marino said. "In the past, we were happy if they survived. Now, we want them to survive and thrive."
American Heart Association
Related Congenital Heart Defect Current Events and Congenital Heart Defect News ArticlesScientists elucidate genetic underpinnings of congenital heart disease
Congenital heart disease is the most common birth defect and the leading cause of all infant deaths in the United States.New findings on embryonic heart valves may prevent congenital heart defects in newborns
Cornell biomedical engineers have discovered natural triggers that could reduce the chance of life-threatening, congenital heart defects among newborn infants. Those triggers can override developmental, biological miscues, leading to proper embryonic heart and valve formation.Device-assisted feeding and poor growth in newborns with CHD may lead to poor neurodevelopment
Newborns with a congenital heart defect (CHD) often need advanced medical care to survive, leaving them vulnerable to cognitive delays. Various factors, like prematurity, length of hospital stay, cardiac arrest, amongst others, contribute to these delays.Preeclampsia increases risk of heart defects in infants
Pregnant women with preeclampsia have a higher risk of delivering an infant with a congenital heart defect. Surgeons refine procedure for life-threatening congenital heart defect
Children born with the major congenital heart defect hypoplastic left heart syndrome (HLHS) often must undergo a series of corrective surgeries beginning at birth.Blood markers could help predict outcome of infant heart surgery
The study, published today in the journal Critical Care Medicine and carried out at Royal Brompton Hospital, followed children undergoing surgery for congenital heart disease, and found that by analysing metabolites in the blood -- molecules created as a result of metabolism -- it was possible to predict a child's clinical outcome.Exercise for older mouse mothers lowers risk of heart defects in babies
In people, a baby's risk of congenital heart defects is associated with the age of the mother. Risk goes up with increasing age. Newborn mice predisposed to heart defects because of genetic mutations show the same age association.Congenital heart defects affects long-term developmental outcome
Approximately one percent of all newborns in Switzerland are diagnosed with a congenital heart defect, roughly half of them require open heart surgery.Environmental toxins linked to heart defects
Children's congenital heart defects may be associated with their mothers' exposure to specific mixtures of environmental toxins during pregnancy, according to research presented at the American Heart Association's Scientific Sessions 2013. Family history doubles aortic stenosis risk
Aortic stenosis is the most common heart valve disease in the elderly. It is associated with congenital bicuspid aortic valve and previous rheumatic heart disease, but is also often caused by calcification of a normal valve.
More Congenital Heart Defect Current Events and Congenital Heart Defect News Articles
Congenital Heart Defects, Simplified|
by RDCS (AE (Author), PE) (Author), RVT (Author), Ken Heiden (Author), Ken Heiden (Illustrator), Linda Wilson (Illustrator)
Congenital Heart Defects, Simplified is a well-organized, easy-to-read resource for the busy echocardiographer who needs access to information immediately. It is also an excellent guide for medical and nursing students and even parents seeking to understand congenital heart defects. The book includes full descriptions of the 30 most common heart defects, ranging from familiar defects like pulmonary stenosis and aortic coarctation to more uncommon ones, such as hypoplastic left heart syndrome and truncus arteriosus. Each defect is explained in a two-page spread with bullet-point descriptions on the right-hand page and full-color illustrations (that include surgical repairs) on the left. The 90 full-color illustrations will further enhance understanding of this complex subject area....
Jeremiah the CHD Aware Bear and Friends: A Story for Children Touched by Congenital Heart Disease|
by Phillip Wolf (Author), Anastacia Reese (Illustrator)
In Hug-A-Beary Town, a new bear cub is born. But something seems different in the cub's health that draws the town closer to him and his family. Jeremiah is touched by a congenital heart defect (CHD). Dr. Toad helps to fix Jeremiah's broken heart so the cub can grow and strive to accomplish his goals in life. Heartbeat Hippo, Rare Rabbit and Cardiac Crane provide support and encouragement. Jeremiah's triumphant story is written and illustrated for children to better understand there is hope for CHDs, and they are not alone in the journey to defy odds. The story also brings awareness to parents unfamiliar of the existence of CHDs. Coloring pages follow Jeremiah's story. Silent Cries breaks through CHD awareness by producing books, event programs and films that help CHD...
The Parent's Guide to Children's Congenital Heart Defects: What They Are, How to Treat Them, How to Cope with Them|
by Gerri Freid Kramer (Author), Shari Maurer (Author), Sylvester Stallone (Foreword)
If you have a child with a congenital heart defect (CHD), you have a million questions: How did this happen? What kind of surgery is best? What’s life going to be like for my child after surgery? Will problems crop up later? Will the crisis ever end? In The Parent’s Guide to Children’s Congenital Heart Defects, more than thirty leading experts in pediatric cardiology—cardiologists, surgeons, nurses, nutritionists, counselors, and social workers—give detailed answers in plain language to help you learn to live with your child’s CHD.
Written by two parents of children with CHD in an easy-to-follow question-and-answer format, this guide brims with the latest information on diagnosis, treatment options, surgery, aftercare, and growing up with CHD, along with the voices of...
Illustrated Field Guide to Congenital Heart Disease and Repair - Pocket Sized|
by Allen D. Everett (Author)
An indispensable portable teaching tool - it has changed the way congenital heart disease is taught.
Congenital Heart Defects: From Origin to Treatment|
by Diego Wyszynski (Editor), Thomas Graham (Editor), Adolfo Correa-Villasenor (Editor)
Congenital Heart Defects, or CHDs, are the most frequently occurring birth defect. In the US alone, over 25,000 babies are born each year with some form of CHD. In the last 20 years, medical advances and new surgical procedures have dramatically decreased the mortality rate of these abnormalities and led to a better understanding and treatment of CHDs in adults. This definitive work on the subject covers all aspects of CHD, under the editorship of a leading geneticist, cardiologist, and public health physician, and features contributions from 60 major authorities in the field. Coverage includes a broad range of topics on the development, epidemiology, genetics, diagnosis, management, prevention, and public health issues of CHDs. This book will be of interest to geneticists,...
Hope for Families of Children with Congenital Heart Defects (You Are Not Alone Book Series)|
by Lynda Young (Author)
The devastating words Congenital Heart Defect thrust parents of more than 36,000 children annually into a frightening, dark tunnel—dramatically changing the dynamics of each family. Because CHD, attacks unexpectedly, parents reel, bombarded with information regarding treatments, tests, and decisions—as parents echo, "I’ve never felt so alone. I can’t believe this is happening to us." From the initial diagnosis and throughout the daunting journey, the twelve chapters and resources in this guide weave advice, support, and hope from fellow travelers and medical professionals who come alongside through encouraging short stories, refreshing helpful hints, and inspiring scriptures and prayers. Many weary parents pull apart as communication breaks down during these...
CHD: Jorja's Heart: A Brave Little Girl's Battle with a Congenital Heart Defect ( CHD )|
by Four J's Publishing
Too Many Children Suffer from Congenital Heart Defects
Do you have a child about to go through open heart surgery for a CHD? You are not alone. This book will help you and your family understand what congenital heart defects are all about, but most importantly, take you on a journey of a brave little girl and her family as she battles her congenital heart defect. 1 in 100 children have a congenital heart defect, yet most children are never diagnosed.
This book does not aim to give medical advice, but to create awareness of congenital heart defects.
Here are some of the things you will read about...
What is a congenital heart defect?The DiagnosisSurgery DayThe RecoveryAnd much, much more!
Download your copy...
Congenital Heart Defect - A Reference Guide (BONUS DOWNLOADS) (The Hill Resource and Reference Guide Book 127)|
by Capitol Hill Press
18 Health and Disease Professional Textbooks (over 5,300 pages) For Your E-Reader
* BONUS Encyclopedia of Disease (14 volumes, 4,625 pages)
* BONUS Dictionary of Clinical Research Terms (268 pages)
* BONUS Dictionary of Psychiatry Terminology (167 pages)
* BONUS The Complete Guide to Alternative and Complementary Medicine (135 pages)
* BONUS The Truth About Herbal Cures (106 pages)
Note: For the best results and the most comprehensive reading and research experience, please use book in conjunction with the bonus downloads.
The Hill Resource and Reference Guide series is a comprehensive and authoritative source of quality health research sources for both the layperson and medical health...
Congenital Heart Defects: Decision Making for Cardiac Surgery Volume 1 Common Defects|
Expressly created to assist with decision making for surgical treatment of congenital heart defects, this new reference covers all relevant aspects.
The congenital heart defects are presented with each chapter devoted to a single malformation, with incidence, morphology, associated anomalies, pathophysiology, diagnosis (including clinical pattern, electrocardiogram, chest X-ray, echocardiogram, cardiac catheterization with angiography), indications for surgical treatment, details of surgical treatment, potential complications and literature references.
Morphology, pathophysiology and surgical treatment of the defects are explained with schematic drawings, while images taken from morphologic specimens, echocardiographic and angiographic investigations as well as from...
Adult Congenital Heart Disease: A Practical Guide|
by Michael A. Gatzoulis (Author), Lorna Swan (Author), Judith Therrien (Author), George A. Pantely (Author), Eugene Braunwald (Foreword)
Congenital heart disease with its worldwide incidence of 1% is the most common inborn defect. Increasingly, patients are living into adulthood, with ongoing congenital heart and other medical needs. Sadly, only a small minority have specialist follow-up. However, all patients see their family doctor and may also seek advice from other health professionals.
This practical guide with its straightforward a,b,c approach is written for those professionals.
Special features of this book:
• Introduces the principles of congenital heart disease and tells you whom and when to refer for specialist care
• Discusses common congenital heart lesions in a practical, easy-to-follow way, with an emphasis on diagnosis and management issues
• Includes an...