By Gil Wernovsky, MD; Mary T. Donofrio, MD; Melissa B. Jones, MSN, CPNP-AC; Jacqueline Sanz, PhD, ABPP-CN
Background
Children with complex Congenital Heart Defects (cCHD) are now surviving neonatal and infant surgery with a frequency thought to be impossible only a generation ago. While advances in Medicine and Surgery have allowed the ability to “mend” children born with CHD, the increasing number of survivors has created a growing population of children in our primary and secondary school systems, and young adults entering the job force.
In the United States alone, over 35,000 infants are born each year with CHD, and more than a third of these infants have cCHD, and will undergo “palliative” or “corrective” surgical interventions in the first year of life. It is estimated that there are more than one million adults now living in the USA with a variety of CHDs, which includes over 150,000 adults living with cCHD. Due to improved survival rates in the past two decades, there are larger numbers of school-age children with increasingly complex forms of CHD. As survival rates have increased, additional attention has been directed toward understanding and treating the long-term challenges for these children and young adults, including behavioral problems, academic performance and mood disorders, all of which combine to affect health-related quality of life.
To read the full article, please go to the June 2018 Issue of CCT, where it was originally published.