Articles on CHD
The National Heart, Lung and Blood Institute (NHLBI) created the Bench to Bassinet Program to accelerate the transition of congenital heart disease research in the laboratory to practical application in patient care.
The program consists of 3 major research efforts:
- The Pediatric Cardiac Genomic Consortium- searching the human genome for genetic defects that lead to heart problems.
- The Cardiovascular Development Consortium- taking a comprehensive look at the key steps in the development of healthy and abnormal hearts.
- The Pediatric Heart Network-a select group of academic institution in the US and Canada conducting research to determine optimal therapies for children with congenital and acquired heart disease.
Interventional Cardiology- Cardiac Catheterization- The use of "off- label " devised in treating heart problems in infants and children via cardiac catheterization has grown rapidly over the last two decades.
"Off Label " is a term used for using a devise that was created for use other than what a doctor is using it for. This has been life saving for thousands of children who had no other options available for them. Thanks to the creativity of a select group of pediatric cardiologists and pediatric cardiac surgeons, modifications of devises such as stents meant for use in other organs or for adults are now routinely used in children.
The Federal Drug Administration (FDA) is working closely with the American College of Cardiology to develop new clinical trial requirements that can be realistically met by what is seen as a "small " number of patients that would benefit from the use of these devises. Current requirements make it is difficult to design traditional, randomized clinical trails.
Everyone is in agreement that Safety is paramount and testing of devises is needed to ensure adequate safety standards are met. In the meantime, the FDA has created a way for infants and children to obtain access to these "off-label " devises through
their Humanitarian Exceptions. The Heart of the Matter highlights the use of such a devise, The Berlin Heart, in the Tillman story.
There are a number of congenital heart defects that are life threatening that sometimes go undiagnosed before or immediately after birth. If not discovered within the first 48 hours, a child can become critically ill and even die. By using pulse oximetry, a simple, non-invasive test that measures the oxygen level in the baby's bloodstream prior to the baby's discharge from the hospital, these heart problems can be detected and immediate care given to save these children's lives.
In 2011, the Secretary of the Department of Health and Human Services, Kathleen Sebellus, announced that CHD screening would be included on the recommended Uniform Screening Panel- a list of 30 disorders that newborns are routinely screened for prior to discharge from the hospital.
This is not a national mandate- the inclusion of the pulse ox screening is determined by each individual state.
Using a combination of surgical procedures developed over the last 11 years, surgeons at Boston Children's Hospital have established a new approach for rebuilding the heart in children born with a severe heart defect called hypoplastic left heart syndrome (HLHS). This "staged left ventricle recruitment" (SLVR) strategy uses the existing standard single-ventricle treatment for HLHS and additional procedures to spur the body's capacity for healing and growth and encourage the small left ventricle in these children to grow and function.